Healthy Chester

Embodying the Memory

2007-04-09T15:43:00.000-07:00

Dear Friends,

Yesterday afternoon, a group of Chester's friends, students and family gathered in his beloved classroom. The circle was a simple ceremony of remembering. We shared stories of Chester and invocations of his teachings. Delightful food was shared, breath moved in the circle and we filled the room with the laughter, love, and heartfulness that Chester brought each day to the classroom.

My only invitation to the circle was to really remember Chester's teachings. And to remember, we must bring them into practice, embody and animate the teachings. Chester offered each of us so much, giving deep and loving permission to all those parts of us that were ready to emerge. The thing I heard the most yesterday, and indeed in all my conversations about Chester, is this: "He changed my life." With this profound recognition, we each must make a daily choice to continue breathing fully, touching with presence and grace, and relating from the truest part of ourselves.

This is my daily practice- continuing to learn from Chester as I deepen my embodiment and awaken the wisdom of my body. For this was Chester's central invitation: a relaxed, awake awareness of the vastness within.

With love,

Chrys

Typical Chester

2007-04-02T20:14:00.000-07:00

Hi All,
A friend of mine who lives here in the Cincinnati area called me tonight. She had been at a church meeting last night, and had a message for me. There were two people at the workshop she was attending from Camp Chesterfield (even that name cracks me up). Camp Chesterfield is a Psychic Religious Grouping that has a housing area north of Indianapolis, IN. I have been there before for psychic prayer, and they have gatherings where they pass on messages from people who have passed. I have never had a message passed on to me, though I have worked with and loved many people who have passed on. They have gatherings like the guy who passes on messages on that TV show, I just can't remember his name, James somebody (I blame the lapse of memory on menopause, because I can).

Anyway, my friend Peggy told me that she had already been given a personal message and people usually do not get more than one message from spirit per session. So she was not expecting anything when the man came back to her area of the room. He said that he had a message for someone that needed to be passed on to a friend. She thought nothing of it until he asked if the name Chester meant anything to anyone. She said no one else responded, so she raised her hand and said she had a friend who just had a good friend pass from this world.

The psychic said that Chester had lingered physically, but his spirit left quickly (that seems typical of Chester - he always walked three steps ahead of me, no matter how desperately I tried to catch up... he just walked faster). The main message for me was, "I'm a lot better off than you are." My immediate reaction was to laugh, because that's a Chester statement if I ever heard one. I could just hear him laughing, and pointing at me while doing so.

I'm not one to go and get psychic readings, though I have had some powerful psychic experiences and have had a few readings in my life. I was really curious about Camp Chesterfield when I heard about it 12 years ago. I found it really interesting, but I did not have any powerful experiences there and just found it interesting. To have this message come to me out of the blue has made Chester more present to me than anything so far. I want to go visit again, if nothing else because its called Camp CHESTERfield.

My friend mentioned that she had written down the statements being made on an envelope, but she could not locate the envelope this evening. If there is anything else that might be meaningful to anyone, I will certainly pass it on. May the dragonfly be with you.

My love to all, Marilyn

APRIL 8, 1-5: A Body Prayer Circle for Chester Mainard

2007-03-26T13:43:00.000-07:00

For the Love of the Flesh,
In Praise of the Spirit,
and In Memory of Our Friend

May the communities of Chester Michael Mainard
gather on April 8 at 1pm
to fill the legendary classroom at 4920 Telegraph Ave in Oakland
with our breath, love and gratitude.

Come share gifts of hugs, stories and songs with us.
Altar items and memorials welcome for our group altar.
Potluck food encouraged- Chester's favorites are especially welcomed (which is a pretty big category- from sushi to melons, spring rolls to cookies, Chester relished so many tastes, and so shall we!)
As always in this sacred space, your full emotions and experiences are honored.
If you are unable to join us in person, please feel free to create your own memorial to honor your expression for Chester's life and passing.

Any questions please contact Chrys directly: openhands@mac.com

On the road

2007-03-21T09:04:00.000-07:00

Dear Family, Lovers & Friends of Chester,

I have enjoyed hearing the many ways that "Pester" has been visiting us. I am praying that his healing light continues to comfort us all as deal with the many ways that our grief has impacted us.

I am on the road back home after almost a month away. Chrys continues to gather plans for another celebration of Chester's life in California in the coming weeks. I will let her post the details as they unfold. Many of you have asked about the pictures gathered for his celebration in Missouri. Once I get home, I will put together a slide show for the web and post the link here on the blog. Look for it sometime this weekend.

In loving, calming breath,

Bean

PS Dawn had asked me to let others know about another opportunity for others to share their thoughts and memories about Chester. My apologies for not informing you until now. There is a guestbook at http://www.legacy.com/Link.asp?I=GB000086801047

Saturday Memorial in Missouri

2007-03-18T13:23:00.000-07:00

Aloha, All:

Bill here, blogging for Bean, who has asked me to report on yesterday's Missouri Memorial for our Chester.

I arrived at brother Dan's house at about 4 PM on Friday to be met by Chester's dad Chet and his wife, Teri. To my surprise, I was greeted as "someone we already feel we know" because "Mikey" had talked so much about me. At any rate I felt immediately welcome and "a part of the family." Bean was in bed sleeping, in part because of the sheer exhaustion of caring for Chester in the final days and partly because she had caught pneumonia. I opted to take a shower and a nap (having worked a full day before hopping on a plane in Maui, then via San Francisco and Denver on my way to Kansas City. Before napping, Chester's sister Misty arrived and I was able to say hello to her. I felt that her greeting was a bit chilly and wondered about this. I am told that after I went to sleep, Dan had arrived home and there was an apparently ongoing argument that ended with Dan asking her to leave. I was later told that the argument was about issues surrounding Chester's last days here -- and to my way of thinking, entirely the sort of thing that families go through at such a time when emotions are running high. Sad that such stresses often keep us apart when we most need each other.

Saturday was cold and gray, with even a few snow flurries. (Not the sort of weather I prefer, that is for sure). After several hours of gathering up everything we headed off to the Johnson County Fair Grounds -- and a really very nice hall with a great kitchen. We were greeted by friends from Nancy's work place (who were helping with the food) and three arrangements on the main table -- one from Body Electric (potted spring flowers and orchids in a moss covered wire basket, one from Barbara and one from Chester's "Showtime Family." We hurried to set up the computer with a slideshow of pictures from different stages of his life (Bean will revise the slideshow for the web and post it soon) and his beloved Ipod was playing some of his favorite songs. We set up a card table covered with Bean's sarong and selected items from Chester's altar lit by candles and many, many pictures of Chester at all phases of his life. And fluttering around the perimeter of the room we hung the prayer flags that had adorned Chester's room. This along with some helium balloons (We'll Miss You) transformed an otherwise stark white space into the kind of environment Chester loved and in which he thrived!

While the food was still being set out (including deep fried turkey done by Dan that morning), people from this area began to arrive. These were mostly relatives, but there were also a few people who remembered Chester from High School, or from some other youthful activity such as his Boy Scout Troop. A few have followed Chester's story on the Blog, but most were of a generation not accustomed to these "newfangled" ways. The most common comment was "I knew Michael (Chester) when he was young, but after seeing the pictures I wish I had known him as an adult."

True to the "party atmosphere" favored by our Chester, food was the main event of the day and there was lots -- all kinds of typical Midwestern side dishes were brought by the attendees to complement the turkey and ham. No one left hungry. When all had eaten and everyone was visiting around the tables, Dan spoke a few words in remembrance of his brother -- heart-felt if brief. Chester's Dad Chet had wanted to say something as well, but felt too choked up to manage it. Bean said a few words and then played as song used often by Chester in his teaching (Heaven Down Here by Tuck and Patti). And then it was over.

We packed away the food and the pictures and the mementos. Bean had made a wonderful printed "program" which quotes 2 verses from one of Chester's favorite Rumi poems:

Today, like every other day, we wake up empty and frightened.
Don't open the door to the study and begin reading. Take down a musical instrument.
Let the beauty we love be what we do.
There are hundreds of ways to kneel and kiss the ground.

The breeze at dawn has secrets to tell you.
Don't go back to sleep.
You must ask for what you really want.
Don't go back to sleep.
People are going back and forth across the doorsill where the two worlds touch.
The door is round and open.
Don't go back to sleep . . .
We were back at Dan's by 5 PM and, I think, all of us hit by a certain "finality." Chet recounted that as they were getting out of the car the balloons "took off toward California all on their own." ("We Will Miss You" ... floating higher and higher into the sky).

Today, we are all resting, eating, reminiscing and resting again (Bean has slept nearly 20 hours!). This is certainly not the end of our Chester. But, he will not be with us in the same familiar manner that was his special touch.

Aloha nui loa,
Bill

Mainard Timeline?

2007-03-17T23:36:00.000-07:00

I had friends at the Missouri memorial today, who tried to fill me in on events. (Others who were present will post more about that later.) But some of the details are getting a bit mixed up in the retelling of the saga of his life. I thought that the blog might be a good vehicle for sorting some of this stuff out, & reconstructing a time-line. People on this blog have probably been direct witnesses to some of the events of his life, & we can kind of straighten out details together.

He was born Chester Michael, on September 8, 1953, I believe. Since his father & grandfather were both also Chester Mainards, he went by Mike or Michael through school in Oak Grove, MO. We graduated from Oak Grove High School in 1971.

We both went to the University of Missouri-Columbia, from which I graduated in 1975, but Michael left school our junior year, it seems to me. (He was going through a lot of stuff.)

Those of you who knew Chester, or even Erik, might have trouble recognizing the Michael I first knew. He was an Eagle Scout (hand to God! I was at the ceremony & saw Blondie pin the pin on him with my own two eyes!), & in college he joined Naval ROTC. (His ROTC commander practically WEPT when he left the university!) His leaving the university was a major break -- a major change in the way he defined himself -- a time of major upheaval.

After he left school, he went over to Israel to live on a kibbutz. He was something of a seeker in those days, & at one point talked about possibly converting to Judaism. But once in Israel, he found himself far more sympathetic with the Muslim underdogs, & he ended up cutting his stay short.

Now, somebody stated at the memorial that one of his wives was Israeli, but that is not so. He had been writing to a Danish penpal named Anne-Lise Sogaard for several years. (I think since high school.) When he commented to her in a letter that he was leaving Israel, she invited him to stop in Denmark on the way home to the States, & he decided to do that. He wanted to stay & explore Denmark for a while, but he had no money. My impression at the time was that he married Lise so he could live & work in Denmark for a while, & so she could come to the States with him for a while afterwards, & they had agreed to marry on that basis. But you know how that turned out -- she wanted to stay married... Things got a bit ticklish later. (Among other things, I had sent him an urgent aerogram to Denmark telling him not to marry her -- which he had already done -- so she figured I was the enemy. But we EVENTUALLY became good friends, & corresponded for some years after her return to Denmark...)

I remember serving Michael & Lise an INSANELY spicy pot of chili in an apartment I had in the summer of 1975, when I was finishing college with a single summer term. So they were already married & back in the states by then. They both got jobs in Columbia, MO at a school for the retarded (that's what we called it back in the dark ages) -- which is where Michael first learned sign so he could work with deaf children at the school. But they separated in late 75 or early 76, because he was single in that time frame... He was still living in Columbia, Missouri in October of '76, when my youngest sister died, because he was the one who drove me back to Columbia after the funeral.

It was also some time in the mid to late 70s that he became Erik. He was plagued by the fact that Michael was a common name, & wherever he went, there were other Michaels. One year, in his college dorm there were something like 6 other Michael's on the floor...

Anyway, at one point, he was applying for a job, & the interviewer told him, "Look, we would really like to hire you, but we already have 2 (3?) other Michaels here -- is there something else we could call you?" He christened himself Erik to get the job. (I was trying to remember what Lise called him, but I didn't spend much time with them when they were together -- that enemy thing. And after they broke up, she always referred to him as Michael -- because I did?)

Erik moved to Wisconsin, but I am not good at remembering dates. I think it was probably early in 1977. (Anybody out there remember?) It seems to me that I drove up to Wisconsin to visit him with 2 friends of mine, & my best recollection was that that would have been spring in 1977. The visit was not a huge success, & we had a quarrel by mail, & did not speak for a while. (Again, he was going through a lot of changes.) I moved to Excelsior Springs, MO in late 77, & Michael/Erik called & was going to come visit me so we could renegotiate our friendship. But as luck would have it, a bad blizzard blew in, & Michael had to call & cancel that meeting, because he had to drive from Oak Grove to WIsconsin in the blizzard...

We both went through a lot of address changes after that, & lost track of each other. (Didn't help that I married & changed my name, or that I had no relatives left in Oak Grove.)

I know that at some point, he married again. All I know about his second wife was that she was Danish, too, because he joked to me that of all the people he had known, & all the places he had been, wasn't it odd that both his wives had been Danish? But I don't know her name, or where or when he married her. And when I asked him about it (while we were busy rebuilding our friendship) he didn't answer. (We had so much catching up to do that we missed some bits. Anybody know his second wife?) But neither of his wives were Israeli, & the wife he brought back from the Israel trip was definitely Danish, & he told me that his second wife was Danish, too.

I finally tracked him down through his grandmother, Gracie, when a mutual friend of ours was dying in the mid-80s.

It must have been in the Wisconsin years that he took up dancing, finished his bachelor's degree, got a Masters in counseling, started doing massage work & work for the medical school, but the telling of it to me was all kind of jumbled up & out of sequence. I would love for somebody to help me sort this stuff out. Does anybody remember dates or details?

I know that he started traveling to teach while he was still living in Wisconsin, but he kept his home in Wisconsin until it just seemed silly for it to be empty more often than he was there. At that point, my address in Sumner, WA became his mailing address. He left me a big stack of signed checks, so I could pay his bills, & I would email him wherever he was so he could tell me how much to pay on things like credit cards (where there was actually a choice in the matter.) We have lived at this address for 14 years or so, but I can't remember the exact duration of his using our home as his base. (He told me at the time that people were horrified he would trust me with signed checks, & we both laughed about it.

By the way -- I want full credit. I am the one who bullied him into getting email. He kept asking me why he would possibly need email, & I finally gave him one of our email addresses (we were on Prodigy, & had 5 addresses -- so I cheated.) During his gypsy years, he started demanding that everybody else get email, & his laptop computer became his link to many of us, no matter where he went... He joked that he was prosyletizing others as earnestly as I had prosyletized him.

The gypsy years were lovely for me, because I was homeschooling a young child, & didn't get out much, but Michael was sharing his adventures with me almost every day. (During intense patches, we sometimes emailed 2 or 3 times a day.) Once he settled down & had more of a regular life, he was busier & we didn't correspond quite as much.

I don't really remember the exact date he settled in Oakland, or the exact time he became Chester. I know that my son first knew him as Erik in the late 80s. And I know that just about the time I was able to switch from Michael to Erik, he decided he was Chester... (That's when I started addressing my emails to him "Dear You." Any of you who helped him by reading his email when he was having trouble reading, that's why the ones from me were always addressed that way.)

So help me fill in some of the details. My guess is that the Erik/Wisconsin years will be the least represented at either memorial, so the folks who know him from that period, in particular, need to keep us from messing up...

Recognition and gratitude

2007-03-16T10:58:00.000-07:00

I want to express my appreciation for the kind words and gratitude that many have expressed to me in the blog comments, emails and phone. I am incredibly honored to have been with Chester as he passed and off and on through the last year and half but there are so many others that held him, supported him and loved him as he dealt with this illness.

I especially want to recognize the tremendous effort that his dear family expended in their promise to keep Chester at home. For six months, he lived with his brother and sister-in-law. They were the ones that fed him Dan's excellent cooking, got him dressed in the morning and got up with him at all hours of night to meet his needs. His sister Dawn, provided comfort, giggles and assistance during the day while Dan & Nancy were at work. It was Dawn that continued his hydrotherapy as long as he was able. She also took over the numerous details required of his care. His momma provide more laughter, delicious food and the incredible power of "momma Kisses". His step mother Teri and his dad drove up to provide much needed respite for days at a time. They provided lots of warm embraces, more of his favorite dishes, entertainment, support and safety for Chester. Caring for Chester was joyous, frustrating, fulfilling and exhausting work. I am just glad that I was able to help them out towards the end. Here is to all of the family and friends from near and far that lent their love, support, time and energy in caring for the cheeky one!

Musical Memories

2007-03-15T21:06:00.000-07:00

Throughout the day, I have been listening to Chester's music, trying to put together the music for the Celebration of his life to be held in Missouri on Saturday. Although I felt his spirit pass from this room with his final breath on Tuesday night, I am warmly embraced by his presence as I sit as his computer, listening to the music that he loved. So many memories are wrapped in the music, from doing our morning ABBAloutions in Oakland to crying together over the Mission soundtrack the day before he died to hearing Heaven Down Here while receiving loving massage, the post-Big Draw bliss listening to 1492, to the excitement he had in sharing the Wheelchair Blues with his friends, to his valiant attempts to turn me on to opera while I fixed his dinners. Over the years, we experienced and shared so much through music: the good, the bad and the blissful. When he was still able to manage his computer, he would make me up CD compilations to celebrate our memories and to continually introduce me to the music that moved him so. Selecting songs is an overwhelming in terms of how many songs moved him but also feels very reassuring and joyous. It has been very much of a healing task for me. I feel very grateful and just enveloped in his love and light.

A Prayer to the Unknown

2007-03-14T18:24:00.000-07:00

My dear friends, please breath with me. May we send winds of love around the globe, from breath to breath, lung to lung, heart to heart of all of Chester's beloveds all around the world. May we sip the sweet air and know we are home.

3-13 strikes me as the right, witchy, virgo date for the completion of Chester's transformative journey. I was feeling it in my bones all day, and was moving towards a closing ritual with him when Bean called and asked me to speak to Chester through the phone, which she lovingly held to his ear. Breathing through the overwhelm, the "what could I possibly say" panic, I had my lover hold my heart and my pelvic floor as I tapped into my communication with dear Chester.

I told Chester that I loved him, that I was walking strong with his teachings in my bones and flesh, and that I promised to carry his lineage. I then reminded him of one of themes of his teachings- the Big Draw, and that he used to speak of it as a "prayer to the unknown." I invited him to breathe his last breaths as a prayer to the unknown.

I do not feign to understand the inner workings of our great spiraling spirit, the journey of the soul, the relationship between those of us breathing and those of us simply in-spiring. But last night, after falling asleep in my partners arms, I dreamt of Chester, flying free on the winds, dancing in the great open air, laughing.

I have been holding Chester close to my heart and loin, standing with him at the gates, for over a year and a half. Now, with hands open wide, heart full of reverence and belly round with gratitude, I move into this new relationship with Chester, and stream love to each of you whose life was massaged by his presence here on earth. May we truly walk, in love, with the lessons we learned at his side.

I will be calling for a gathering of his San Francisco Bay area friends and family, a circle of breath and reverent honoring. During our time together this past year, Chester and I spoke many times of his wishes for a memorial, and I will do my best to honor his vision. Please visit the blog in the next few days for date, time and location details. If you want to assist me in creating such a gathering, please email me at openhands@mac.com.

Dear friends, please breath with me. May we each feel and know our home in this world, remembering that we are of this earth. May we each offer up a prayer to the unknown, and welcome in the possibility of our next breath.

Missouri Memorial

2007-03-14T17:51:00.000-07:00

There will be a celebration of Chester's life on Saturday, March 17th 11:30-3pm at the Johnson County Fairgrounds Rural Youth Center, 386 NW 145, Warrensburg, MO 64093.

I am helping the family gather pictures for the celebration, but I have very little access here of photos of Chester during his traveling and teaching days. If you have photos of Chester that you would like to share with his friends and family, we would be grateful if you emailed them to bean.fairbanks@gmail.com.

We have greatly appreciated your stories of your personal rituals and experiences in acknowledging Chester's passing. They have lightened our moods, made us smile and provided opportunity to share tears. Thank you.

2007-03-14T12:39:00.000-07:00

2007-03-14T11:52:00.000-07:00

I guess I thought I was prepared -- but I guess you are never prepared. It has been a strange morning...

A while back, I was passing a display of inexpensive (OK, CHEAP!) jewelry on sale at a local store, & a little dragonfly necklace caught my eye. it is a very simple silver dragonfly, with cubic zirconia wings. I thought of Chester/Michael/Erik's dragonfly healer totem, & I had to have the necklace. Somehow it just seemed so appropriate -- a dragonfly turned into a creature of light. Unbeknownst to me, it was a choker -- which I wouldn't normally buy. It has one of those adjustable chains in back -- the kind where the unused length of chain hangs down your back -- & the dragonfly is set into the chain in such a way that you cannot slide it along the chain. So naturally, every time I wear it, the dragonfly flitters over to perch over my left collarbone. Didn't that just figure? (I really need to take this sucker off the chain & reset it in something where it will stay put!) I joked with him that anything representing him would have to be off-center.

Last night, after I got The Call, I was fingering the dragonfly & pulling it back to the center of my throat, & I had a sudden flash of memory, from a time probably 38 years or so ago. I was wearing a necklace, & the clasp had worked around to the front, & 15-year-old Michael asked me if he could adjust it because it was driving him nuts. I don't know if he persisted with that obsession, but when we were in high school, he really had a problem with lopsided necklaces & exposed clasps, & he was always asking girls if he could adjust their necklaces. (I can even remember a time when he didn't feel that he knew a woman well enough to ask, but I could see him obsessing because her necklace was cattywampus.)

This morning, when I got up & stumbled into the bathroom, the dragonfly was perfectly centered on my throat, & I really got the giggles!

Into the light

2007-03-14T01:11:00.000-07:00

Chester passed peacefully into the light at 11:22pm. During his goodbye with Chrys on the phone, Chester grabbed my hand and pulled it to his chest. He had some episodes of fear and spasms during the evening and then slipped into a coma, still clinging my hand to my chest. He slipped into Cheyne-Stokes breathing, which probably meant that the pressure was building in his head. Once Nancy got home and family members were called, his breathing changed again and his blood pressure plummeted. Alone in his room, I quietly crawled into his bed. I laid his head on my breasts, held our hands over his heart and he took one final breath.

They have just taken away his body and we are crawling off for some much needed sleep. I will post more tomorrow.

Healthy Chester

2007-03-13T06:26:00.000-07:00

I have been thinking of the name I gave this project, "Healthy Chester," when I set up the blog and later the site. It represented what I teach: to focus on what you want, not what you don't want.

Now that it is quite clear that Chester will not be returned to the vision of physical, corporeal health that I desired from the beginning (even with a slight Buddha belly :o} ), I've wondered what the name now means. In the larger context, I know that Chester is quite healthy: his spirit has not been damaged one iota from this experience, and has perhaps been purified further. He has always shone brightly, and I know that will continue once he leaves this form.

Chester's light is one of the primary forces that has led me to the place I am right now: healthy, happy, growing. I know he has done this for many people reading this blog. So in my mind I'm transforming the name "Healthy Chester" to mean peaceful transition, when he will be restored to full health.

I send thoughts and prayers for peace to Chester continuously. Thank you for the request, Bean.

Relief or how we made peace with valium

2007-03-13T05:52:00.000-07:00

Last night was one of my most difficult in caring for Chester. As we struggled to make him comfortable, he seemed to look like he felt betrayed, I am the one that was supposed to make him comfortable but wasn't holding my end of the bargain and I was so frustrated that I couldn't.
He has hated to take medications that make him drowsy and out of it. He really HATED that I had to stick an eyedropper of medication in his mouth. It was a decision that we had to make as his spasms had his limbs banging against the side rails and he was thrashing like a fish out of water. I had to increase the dose gradually until it was doubled his liquid Valium and morphine. That dose allows him to rest comfortably about 3 1/2 to 4 hours at a time. Although it was a double dose for Chester it is still half of the maximum prescribed dose. He is relatively sedated, and he talks, sings and giggles in his sleep. I can wake him but he is quite drowsy and eager to return to his dreams. After the second dose, he added the phrase "thank you" to his repertoire. He still hates the eyedropper, but when I ask him if he is ready for his next dose, he opens his mouth.

1,2,3,4 what are we fighting for?

2007-03-12T14:47:00.000-07:00

Yesterday afternoon, Chester's breathing became very slow and irregular. His vision dimmed to shapes and shadows. We had to identify ourselves because he could no longer recognize us by sight. He called people to his bedside for some quiet loving. When his niece Raina arrived from the airport, he wanted everyone in his room, and he wanted to sit up so he could give everybody good hugs. A couple of hours later, he started talking about the lights and the "beautiful beings". He repeated "good bye" and those in his room were able to say good bye as his breathing slowed even more. Then he rolled on his side and pointed, stating "moonshine, moonbright and moonpies". His breathing picked up and he became slightly agitated. For whatever reason, he turned back.

Since then he has been unable to sleep for more than a few minutes at a time. We were up all night, sitting up, laying down, rolling over, repeat. Everytime he started to drift ot sleep, he would rustle himself awake. He sang and counted to keep himself awake. His favorite song has switched from "Good Vibrations" to "1,2,3,4, What are we fighting for". He would ask for "pillows" and I would crawl up and lie across the head of his bed so he could nestle his head in my bosom and we would hold hands over his chest. He could let the words fall away then, but still wouldn't fall asleep. At one point he reached up with his good hand and grabbed my nipple hard. My yelp and his hysterical laughter made sure that neither one of us even began to drift to sleep for awhile. Unfortunately, the two of us do not fit well in a single hospital bed and I would have to crawl back to the cot next to his bed to rest my back and legs. He can no longer swallow any of his pills and I couldn't get liquid pain killers over the weekend here. We were back to the oxycodone, that this time I was crushing up and spooning under his tongue, trying to stay on top of his pain. Finally about 10am, I was able to make him comfortable enough to relax, if not sleep. We have liquid morphine now and I got permission to use the valium if he becomes so anxious again that he is literally crawling out of bed again.

It is so frustrating and heart breaking, on my part, to see him so close to a peaceful release yesterday and now he struggles with pain and appears frightened to really fall asleep. The increase in spasms both hurt and frighten him and as more days go by without him being able to swallow his medications, the spasms will continue to increase. What are we fighting for? I don't know what made him turn back. I don't know how to give him real comfort. I can put lotion on his back, I can soothe his brow, I can adjust the pillows under his legs, change his bandages and hold his hand but it seems so small in comparison. I feel inadequate in supporting him in whatever it is he feels he has left to do. So, I am sending out a prayer/thought/breath/light/meditation request to all of you who have basked in his light to help send him on to the bigger light that waits to welcome him when he is ready.
PS Chester had another brief seizure while I was previewing this blog post.

Happiness = Poop

2007-03-10T19:26:00.000-08:00

Chester woke up this morning in a great mood. He was in the mood for a party and kept repeating "party" over and over again. He couldn't wait for me to go out and get party hats. Of course, I had to get him a tiara!

When I returned from the store however, it became apparent that we were going to have to treat his constipation pronto. He had been refusing a laxative, but now his belly was so distended that it was beginning to impact his breathing while lying down. I made a truly delectable concoction of Milk of Magnesia, Karo syrup and prune juice, all mixed up and served "coffee hot" per hospice instructions. It has been many years since I had inflicted that mixture on a patient. Chester actually did a great job getting that down but no way was he going to trust me that I was actually just giving him a water chaser. His step mom has to convince him that I was done picking on him and that it really was just water. He would take it from her hand but no way from me. He had a delightful time teasing us and I was able to give him a nice long sponge bath while he sat on the commode. He totally luxoriated in the massage/bath. We wrapped him a sheet around his shoulders to keep him warm and he was told it was his prayer shawl. He immediately burst into Ommmmmmmmm. We teased about mudras yesterday and omm today, which spiritual practice would he take on tomorrow? He sang to us his new favorite tune, good vibration. "Good vibration" has been the phrase he has been using the last couple of days when he is most pleased. Finally pooping and releasing that pressure was definitely worthy of lots of "good vibrations"!

After the laxative did its work, Chester had another seizure when transferring back to his bed. It took three of us to get him into the bed. He came around once I administered oxygen and valium under his tongue. He has been sleeping soundly since then. I can wake him up and he will look at me, but I couldn't get him awake enough that I felt comfortable giving him his non-essential bedtime pills. A big part of his drowsiness is the valium, but it is also another sign of how things are changing. I am keeping him on the oxygen through the night. Chester did not get up into his wheelchair today. He did not eat today except for some snacking on fruit. We have noticed that he smells different and there has been some minor bleeding. Even with these rather omnious signs, Chester sang, laughed, joked, and cuddled throughout the day. His niece will be in town tomorrow and he looking forward to his postponed party. He seems to be in a place of real acceptance and even joy.

Bright and Shining Light

2007-03-09T20:24:00.000-08:00

Hello everyone,
There were two things that I kept telling Chester while I was visiting there, that I insisted he was to remember: that he was loved by many (especially me of course); and that he was a Bright and Shining Light. I reminded him that he was a Bright Light in the Darkness, no matter the condition of his body. I would do this as he was laying down for a nap or for the night, especially when he seemed depressed about his condition, or about the dysfunction of his body that day. It always seemed to comfort him. Bean's post reminded me of this. Thought I would pass it on.

My love to all, Marilyn

Juicy Peach

2007-03-09T18:48:00.000-08:00

Chester has been up and down since the middle of last night. During the night, it was an issue of increasing pain in his limbs and his increasing difficulty in urinating. It took a long time to get on top of the pain. He was really needy of touch and would awake as soon as I removed my hand from his body to try to get some rest myself. Spasms and pain on his left side were scary and frustrating for him. He asked why, why and I answered that it was probably a result of tumor growth. That actually calmed him. He went into a meditative pose, going through mudras with his left hand.

Although much calmer, he was still in pain and he even requested a double dose of pain meds. Working with the hospice nurse, I was able to get his prescription changed to a long acting morphine to help him stay on top of the pain. That, along with a internal catheter, has really helped his pain.

He continues to go up and down, wanting to lay down and then sit on the side of his bed. When he wants to sit up, he wants someone to sit next to him and hold him. If he is lying down, he wants his hand held, his head rubbed or right now I am able to type this because I have my legs propped up on his bed along side of his body. It doesn't appear to be out of fear. I have this image of Chester eating a succulent, juicy, ripe peach and wanting to suck on the peach pit to extract every last bit of juicy flavor before he is ready to let go of that pit and allow it to be a seed for more juicy sweet peaches. It seems more like he just wants to make sure he doesn't miss a minute or a drop of the juicy life that he has led. He wants touch and he wants laugher and sleep just seems to get in the way! We are setting up an air mattress on the floor next to his bed tonight and hoping that will be close enough to allow both of us to get a bit of sleep.

He is definitely seeing things that the rest of us do not. It could be a side effect of the drugs, but I have noticed him looking like he was seeing things that I could not before we upped his meds. Tonight, it really seems that as the veil between life and death has started to part for Chester that he is seeing things that others of us can not. He overheard me tell Nancy that I thought he was having visions but he seemed pretty happy about them. His eyes popped open, he smiled and said peaceful. He has also repeated the word light many times today, which is not a word that he has used since I have been here.

Priceless!

2007-03-08T15:02:00.000-08:00

What is priceless? Priceless was Chester's new and perfectly articulated word in proper and hysterical context. Priceless was Chester's expression 20 minutes ago. Chester laid low yesterday conserving his energy for a full family day today, visiting with his sister, father, step-mother and mother all at once. That in itself was a momentous occasion, everyone together in one room, laughing and loving him at once. Soaking it all in, he has stayed in his chair most of the day: enjoying good food, a manicure, another puzzle etc. Since the middle of the night, it has been important for him to be in constant contact with one of us.

Giggling together at the table, Teri, his step mother reached under the table to check to make sure he was dry. Chester sat up with a jerk and a look of total surprise on his face. I told him that Teri was copping a feel and he burst into laughter. He laughed and laughed and laughed. We even got Chester Michael Mainard to blush! After the laugher started to fade away, he looked at us, shook his head and said "priceless". It took us twenty minutes to stop laughing long enough to start this blog.

While I was at the dining room typing this, he started to repeat the word "home". I got up around the table and laid my heart against his back, his sister took one hand and his step mother the other. He settled against us and repeated home. We called over his mom and his step sister for a picture of his harem scarem. He wanted his friends to see his women. We hope you enjoy it.

Slowing down and speeding up

2007-03-07T11:56:00.000-08:00

Chester is sleeping now, as he has most of the day. His pain in his right arm has increased and now he has some pain in his left thigh, so he has increased his pain medications. His speech, movement and body functions have slowed way down. He did get up briefly to enjoy some french toast, honeydew melon and pickled okra. Truly a breakfast that few other than Chester wouold imagine much less enjoy, but enjoy it he did. While we helped him transfer to his bed from the wheel chair, he had another seizure. It was brief and his breathing was OK but the seizure was differnt from his others in that this time he went completely rigid without any noticeable spasms. He has not wanted to leave his bed since the seizure. He naps or lies quietly contemplating.
Today, he has been much more patient, gentle and peaceful with himself. He hasn't had any outbursts of frustration. Yesterday, he really struggled with urinary retention, in a large part due to his embarassment and frustration in trying to use an urinal. I have been generously and frequently "sprinkled". Since last night, he has only been able to urinate when he is asleep. Although changing him wears him out, he is much more accepting of using the depends than he was of fumbling with the urinal. He seems to be trying to conserve his energy for family time and letting go many of the things he used to hold on to so tightly to maintain his sense of independence and control.
He has fought using a hospital bed, catheter, stool softeners, etc. Now, things have sped up on one end as we scurry about to put things into place to keep him comfortable, clean and dry, and most importantly allow him to conserve his energy for gentle conservation, hand holding and of course, laughter with his family.

Okra, dolmas and blueberry pancakes!

2007-03-06T10:10:00.000-08:00

Although his appetite waxes and wanes, Chester's unbridled enthusiasm for flavor holds true. He has been delighting in the good food that his brother has been cooking for him. He was having a rough, sleepy morning until he heard that his step mom was going to make him blueberry pancakes. The promise of blueberry pancakes woke him right up. Well OK maybe my icy cold hands helping him use the urinal might have had something to do with his instant awakening, but it was the blueberry pancakes that put a smile on his face.

Several of you have called and asked me about sending some type of food to Chester. He can no longer eat sushi. When I asked him what he might like, he immediately piped up okra. He has a large jar of pickled okra that he likes to snack on and he made it clear that a little more of that would be a good thing. He also misses some of the foods that are harder to acquire out here.He was practically orgasmic over some dolmas that I brought with me from Seattle. He also has adored some treats that I brought from Trader Joes.

The house has been busy with family, friends and hospice. Yesterday a highschool, friend fixed him lunch and he was able to visit with her inbetween hospice assessments. The hospice nurse visited this morning and she and I did his physical assesssment together so I could help translate for her and Chester could hear from the both of us about trying to stay on top of pain instead of chasing it. He is having some pain on his paralyzed right side that increases when he moves around. He wants to get up in his wheelchair to join visitors at the dining room table, so we are working out a balance for his comfort and social needs. Right now, his dad and step mother is helping him with a leopard puzzle. It only has 100 pieces and the large size of the puzzle pieces are easier for him to grasp. With his vision changes, he needs considerable assistance but he is doing something with people that he loves and feels a deep satisfaction when he can fit a piece in.

Physically, things are slowing way down but good food, lots of love and simple joys help keep his spirits up.

Twenty Questions

2007-03-05T07:53:00.000-08:00

Well roadside adventures, tornadoes and blizzards kept me away longer than I liked, but I finally arrived in Missouri last night to lend a helping hand. Chester was delighted to see me and was able to crack a joke basically about me being scary but he could handle me. He also was able to verbalize about the possibility of last sunsets. Unfortunately, those two times have been the only times when he could string words into short intelligible sentences since I have been here. His increasing frustration with his inability to form the words he wants and our instability to decipher his stock words and phrases like "all the way back", "all the way home" and "oh god" exhaust him and all that try to assist him. He continues to confuse yes and no, "acceptable" is a more accurate barometer of when we get something right for him. We finally hit on playing "Twenty Questions" as a more effective way for him to express his needs. His understanding is keen and he can nod or say acceptable if I ask him simple yes or no questions like "do you need me to get you something?", "do you need me to do something?" Once I get an affirmation on get or do, I can ask a series of simple yes or no questions until we ascertain what he wants. Asking him a lot of questions may seem like a lot of work, but he is actually really relieved not to stuck saying words that no one understands. I have framed it as going with his strengths right now which is his understanding and not forcing a weakness which is his speech. The look of relief on his face with figuring out a systemic way to communicate, because you know with Chester there is a PROPER way of doing things, has really made my day. You know how his whole face just lights up when something works?

With some headway on communication, my next focus is keeping him clean, dry and comfortable. He hasn't wanted to get into his chair today and last night he went to bed right after dinner. He is so tired that he not only needs help getting his legs into the bed, he also needs help moving his hips to get him aligned in bed. Right now, I am hopping over him and using the pads to get him aligned in bed. Tonight, we will rearrange his room a bit so I can get to both sides of the bed to position him. The family really wants to keep him at home until he passes, I am committed to staying here for the duration to make that possible. We will have to make a few adjustments to make it doable. For example, I can roll him by myself to change the pads but not enough to change his bed until we move it out from the wall. He opted to just have me change soiled pads instead of him getting into his wheelchair so I could change the whole bed. A small rail would help him be able to sit up at the side of the bed, this morning I have had to pull him up into a sitting position to use the urinal.

Hospice was initiated last week as his doctors have told him there is nothing left that they can do and there is no reason for him to return back to them. Several hospice personnel will come by later today to check in on him. I will be talking with them about the little things that will help us take care of him here and protecting our own bodies. Because you just know what Chester would say to us if we hurt ourselves from improper body alignment and support!

They tell me his computer has been acting up and I know his network is down. Later on today, I will take a look at it and read him his emails tonight or tomorrow. Even if he is no longer really able to communicate you in writing or verbally, he does cherish and take comfort in your thoughts. Nancy has asked me to keep you all updated and I will post on the blog. Feel free to call me or email me if you have any questions. The house phone does wake him up, but he seems to sleep through the ringer on my phone (206) 321-4414.
Bean

From Chester's sister Misty Dawn

2007-02-27T20:30:00.000-08:00

Hi all.
Just letting you know that Chester suffered a long and breath robbing seizure tonight. The paramedics were called and oxygen was administered. They also got him into bed after he pinked up and was alert again. Dan and Nancy were terrified, of course. We have to realise that this is to be expected and will most likely happen again...when and not if. It is very hard for
us to watch and experience with him, but would he do any less if the tables were turned? I will be talking to him about everything tomorrow, and I'm sure we'll be enlisting the good folks at hospice for assistance. It is all set up but waiting for him to be ready for it. Also, he has been refusing to increase the seizure meds per Dr's request, so maybe that will change as well.
It just seemed to me that as much as we've all talked and thought about Chester's eventual passing, we are still thinking of it as a "future" thing, when it could become a "now" thing so quickly. Please continue to send your prayers and energy Chester's way as he enters the next phase of his life.

MistyDawn

in retrospect

2007-02-24T08:02:00.000-08:00

Hello friends and lovers of Chester,
I promised to send another message at the end of my stay with Chester, but there just was not time for that. I left there two days ago, on Thursday, right before he went to the doctor. I have not talked to anyone as yet about the doctor visit, but I will let you know how it went.

There is really nothing new to tell everyone about the state of Chester's being. He is fully aware of what is going on with him, and he would cry when I asked him about things that seemed to confuse him. I did ask him if he was able to read his e-mail, and he just said no, and indicated that he is becoming really confused about how to use his computer. I was not able to read any messages to him because we just did not have the time. I wondered about that, since I had been there for days, and I started paying attention to what took up all the time I had there with him.

The major part of my days there were spent in helping him get dressed or changed. He napped a lot. Then he would have to pee. His napping was really interrupted a lot by having to pee. One morning was especially difficult, as he had a hard time holding his urine, and he wet himself a number of times. He is now using 'Depends' and he was getting really upset at wetting them. I just told him, "That is what they are for." He seemed to accept that statement and we were able to go on about what we were doing. I spent mornings checking my e-mail between him napping and helping him dress or go to the bathroom. Dan would put his socks on him before he left for work between 7 and 8AM. Chester would usually go back and nap until around 9AM. He would also take a nap in the afternoon. If he did not, I realized that he got very tired, and he lost more of the little ability to communicate what he was wanting, needing or saying. I have to say that frustration is a main component of what his emotional state. He has lost the ability to use another word, or even to show us what he means at times. When it would be simple for him to move himself to SHOW us what he wants or needs, he does not think to do so. Its the impact of the brain being compromised by the tumor.

My biggest concern, and the concern of Dan and Nancy, is his confusion and obsession over his medications. I think that he is getting them confused at times. I do know that one day he did not take his water pills (for swelling). When he finally took them the next day, he kept wetting himself (as I reported above). Some of the drugs have changed since he went to Missouri so the list they had are no longer correct. He has always been the one in charge of his meds, and he can get quite angry if questioned about them. A lot of my time was spent in trying to figure out what he was trying to say about his medication. He would count them obsessively at times. And then he was not clear about which medications he needed. It was all rather difficult.

The other concern I have is about his ability to get himself on and off the toilet, and in and out of his wheelchair. He did fall on Thursday as his dad was helping him go from wheelchair to toilet. We got him up (his step-mom Terri and his dad Chet got him up) but it was quite frightening for all concerned. Chester's strength and balance seems to be slightly more compromised. A lot of the time I spent with him was in waiting until he was ready to get himself to stand up.... to help him pull up his pants, or in getting into his wheelchair. The last morning I was there, it took an hour getting him dressed. He just was not ready or able to stand up.

I do have to say that Chester is surrounded by a loving supportive family. They may not put info on the blog very often, but they are right there with Chester. I do worry about them, that they get enough support and especially sleep. Dan and Nancy are up with Chester every night, and then go and have full time work schedules. His sister Dawn and Mom are there with him during the day. His dad and step-mom come and visit as often as they can (they live a couple hours away). Please continue to send them energy and support as you do for Chester.

I suggest that if you wish to send greetings to Chester, do so my snail mail. I will post his mailing address here in another post, since I don't have it ready at hand (I'm on my cousins computer). He really enjoys pictures, and short notes would be great. Write big so he can see it. Otherwise someone has to read it to him. Know that others will see it. Since he can not read his e-mail, I think that he feels more alone than ever.

Again, if you have any questions, please write to me. I have a new e-mail address: Owlbreath@fuse.net. I will be able to access that account on Monday. I'm afraid the old address at sbcglobal.net will expire before I get the new one out to folks. So if you are in my address book, please note this new one. Hopefully I'll be able to get the adress out there to everyone.

My love to all, Marilyn

Send e-mail

2007-02-18T11:18:00.000-08:00

Hi everyone,
Just wanted to let you know that I saw Chester on his computer last night, so please keep the e-mail coming. Remember, double space, large print and keep the messages short. If you have a couple of things to tell him, send it in two or three (just thought of that myself). I will write more in a couple of days, before I leave on Thursday. Thank you for those who wrote me. Your support is felt.

Love ya, Marilyn

Visiting Chester

2007-02-16T15:28:00.000-08:00

Hello everyone,
Well, as some of you know, I am on a journey moving from California to Cincinnati, Ohio. That move has been calling me for a while, so I know that there is something I must do there. Also, my family is there, and I have been missing them with increased intensity. I think its all about being called back there.

So here I am in Missouri, having arrived yesterday. Chester's state is one that I expected, but it is still difficult seeing him decline. I am not worried about him reading this, because I do not believe that he is capable of logging onto his computer any more.

His communication skills are practically nil. One statement that comes out all the time is "all the way back" with hand movements of moving something back. No matter what he wants, he keeps saying that when he wants something. This morning he wanted me to cover him with his sheet, but he did not take ahold of the sheet to show me what it was that he desired. He just kept saying "all the way back, all the way back" with the hand movements. When I covered him up, he sighed with relief and said 'yes'. And his yes and no's keep getting mixed up. He will say yes for no and visa versa. The other statements that come out is counting. Last night he was trying to tell Nancy and I that he needed a bottle of medication (we had already gotten him into bed), and he just kept saying "one, two." The bottle of medication was standing next to another bottle that had some of the pills cut in half. He does occasionally come out with what he actually wants to say, and he definitely understands everything that is said to him. But the frustration over not being able to communicate is really high at times. I have not seen him lose his temper yet, but it may come.

There are also times when he just does not seem to be present. I'm not sure if its just that he is tuning people out, especially if he is in a group of people (there were four of us with him last night) or if he just has gotten confused over too much input. His brother Dan seems to think that his eyesight seems to go away at times. He does seem to stare into space, or give me an unfocused look at times. But since he can not communicate, its hard to have a discussion with him about what is going on with his sight, his thought process or if he is getting overwhelmed.

Physically he does seem a bit more fragile. He can not seem to be able to put a lot of weight on his right leg. I do know that he has fallen a couple of times while trying to go to the bathroom. He fell once while he was home by himself and trying to go to the bathroom. He kept calling Misty at home instead of on her cell to let them know he needed help, and his emergency button did not seem to work from the bathroom. When they checked whether the button was working later that day, it worked fine. Since that time his family has not left him alone. Incontinence has become a real problem, especially at night. We talked to someone today about an external catheter, which may help on many levels. He would not have to get up at night to use the urinal.

He seems to 'almost' be able to do things that he never even had to think about before. Last night he was trying to get to a certain song on his Ipod, and he kept trying to touch the screen instead of the bottom of the thing. I used my voice to try to help him, since my trying to physically help him did not seem to be what he wanted (independent soul that he is). He finally got it on the song he wanted to listen to. It did point out to me that certain things seem to be slowly deteriorating in his thought processes.

He still laughs a lot with me, even when I have to tell him that it was a really dumb joke I just told. I had him really laughing this morning when his sister Misty called. I told her that Chester had thrown me out of the house out into the snow. Then she asked how I had gotten the phone, and I said that he threw that out too when it started to ring. He thought that was really funny. Then he was like a little kid when they got there, wanting me to be really quiet so we could scare them when they came looking for us.

And we had sushi for lunch. He can no longer eat any of the uncooked fish. The last time it gave him a horrible case of diarrhea and cramping that lasted for two days. But we had a feast this afternoon. In Missouri of all places. There was lots to be enjoyed. Eating is one of his high pleasures, and his brother Dan is an excellent cook. His family is very loving to him, very supportive.

So that is about it for now. His brother Dan, sister in law Nancy, sister Misty and mother are all pretty well exhausted and still keeping on with what has to be done. Just to let you know why there are not too many posts here to the blog. It gets hard to write about what is going on even for me. I will be posting while I am here.

If you have questions, please e-mail me at Owlbreath@sbcglobal.net. I will not necessarily look for responses or questions posted to the blog. Just too busy. Its taken me all day to get this written. Its easier to respond to questions.

I also wanted to mention that there will come a time when they will probably be forced to put Chester in a nursing home. Dan is the only one that can pick him up (like when he falls) and Chester is now about 250 lbs. If he gets to a point where he can not stand on his own, or get himself into his wheelchair, they will be forced to find a place for him that can care for him on a 24 hour basis. Nancy and Dan both get up during the night with him (take turns) but they both have jobs and I can see the exhaustion in them (Nancy got up with him three times the other night and had to clean his sheets twice). Misty and his Mom would not be able to physically care for him if he loses any more mobility. I just wanted to put it out there that its becoming a probability, and not just a possibility. I know that he would not want or like it, but there is the reality of the situation.

Love to all, Marilyn

Happy New Year

2007-01-01T22:31:00.000-08:00

Happy new year everyone! Chester ended
2006 with a very good day.He got to go
shopping with Dan & Nancy (for pounds
and pounds of seafood, of course!), out
to Mr.Sushi for lunch, and a lively party
for the evening.
When I arrived, he was in his room, dancing
to some very cheerful & upbeat tunes. He
couldn't even stop dancing long enough to
tell me something he wanted me to do!!
We hung his prayer flags all the way around
his room, watched a bit of a cartoon on the
tube, had an absolutely scrumptious seafood
dinner(thank you Dan!!), a few drinks, and
the party was on! Chester was still partying
heartily with Dan when Mama & I left for
home . dawn

Family Christmas

2006-12-29T19:30:00.000-08:00

Just letting you all know that Chester had
a really good Christmas with his family in
attendance.He even got sushi for gifts!!He
says YUMMM!!!!
Chester has taken his second dose of chemo
(every 6 wks).His speech is very difficult and
extremely frustrating for him now....more
so than it was over the summer.
He is ever so thankful for the thoughtful
care packages he's been receiving.
He also enjoys the email, so please continue
sending it.Thank you ! (Dawn)

Reminiscing

2006-11-20T21:14:00.000-08:00

Dawn again. I've been sick in bed for more
than a week now.A week ago Saturday we
had a belated birthday for Chester, since
those of us in MO weren't able to attend
on his actual birthday in September.
Chester's niece Rana flew in from NC,and
friends from Chester's high school days
joined us too. We had dinner, gifts, cake,
reminiscing, and lots of laughter. Nancy
even brought out their high school year
book, and you can only imagine the flutter
of conversation that brought on!
Chester's good friend Barb has been visiting
Chester since Friday, and I think he's really
enjoyed their time together.

Rambling In The Rain

2006-10-26T21:17:00.000-07:00

I realise that everyone that cares about Chester is checking
this blog everyday or so and wondering why I'm not writing
more, and more often.
I know this because it's what I thought when he was still
living in CA, and though I spoke with him most days, I
yearned for more.
I just want all of you to know that I know how you're feeling,
and I now know how his care team in CA felt. Caring for
Chester is an honor, and time consuming, and you just want
to give him ALL of your attention, thought, and energy.
Unfortunately, that doesn't leave much of those three things
for Blogging! I cannot begin to say thank you enough to all
of those that contributed to the blog for the last fourteen months!
Having said all that, I wanted to let you all know that Chester
has decided NOT to proceed with plans for his own house.
We met with a general contractor in an effort to speed things
along, and the price of everything was more than could be met.
Chester is understandably disappointed by this turn of events.
Dan and Nancy have generously and graciously offered Chester
their home and hospitality for as long as he wants to reside
there. I will go on commuting to their home as well.
Chester met with Dr M again this afternoon. After a lot of
thought and research, Chester has decided to try a different chemotherapy drug.I will do my best to let you all know how
this goes.
Upon leaving the hospital, Chester expressed a desire to visit
a drive-in that he remembers from his childhood,Mugs Up!
That's really the name of it! They serve loosemeat sandwiches
called Zipburgers and Whizburgers (Zipburgers with cheese).
We couldn't believe our luck that the place is still in business
after all these years!! Of course we HAD to go there, and that
was definitely the highlight of our day. On the way back home
to Dan and Nancy's, we drove by the old farmhouse where our
mother grew up (and where Chester visited our grandparents
as a child).Seeing all the "new homes" built up around it was a
bit of a shock, but the old house is still there and cared for,
and that was nice to see.
We continued homeward in the rain, glad to know there was a
warm, dry and family-filled home waiting ahead.
Dawn

Home At Last

2006-10-18T21:01:00.000-07:00

Dawn here. It has been a very,very long day with a short night ahead, so
this will have to be brief.
Chester's belongings arrived on the moving truck this morning--bright
and early.Thank you Nancy!!! The driver was very professional, and couldn't wait to meet Chester. He was a blessing, and took good care of
everything.
We have begun the process of settling him back in among his familiar
belongings, and he finally gets to sleep in his own bed tonight.
He is having a visitor from Australia tomorrow, and for several days to come, so he will have plenty to keep us all busy for a while yet.
Please continue to send your energy our direction so we can continue
giving Chester all the best of ourselves.More later!

An Additional Two Cents

2006-10-14T11:25:00.000-07:00

Howdy everyone, Jaime here.
I spoke with Chester yesterday and wanted to expand a bit on Dawn's previous entry regarding Chester's new oncologist...
To say that I was relieved when he told me that he really liked Dr Moormeier is an understatement, since we'd been having such a run of "bad luck" with the Oncologists at Alta Bates. Chester'd begun with Dr Anne-Renee Hartman - she of the incredible shoes! - and had developed a great rapport with, and trust in, her. But she left in the Spring to relocate to the San Francisco peninsula and was replaced by Dr Chakravarthi, whom he also liked. But she left after a couple of months - before we could really establish any kind of meaningful connection - and was replaced by a doc that Chester did not like very much at all (and will so remain nameless)... It was a great frustration for him (and his team) because he'd started out with such incredible advocates for his care, only to see them disappear. So finding Dr Moormeier reinforces my optimism that the fates are again working WITH us - even in Holden Missouri!
Cheeky said that Dr M interviewed he and Dawn for two full hours - a true rarity (given that our visits with his CA Oncologists never lasted much more than 15 minutes). I know it also soothed alot of Chester's uncertainty about "what's next?" The less he has to be concerned with, the better!
Speaking of - could I also request that each of you expand your energetic circles of support for Chester to include his family? Mom, Dawn, Dan & Nancy are also going through certain upheavals in their life with their brother back among them and could certainly use the additional "juice" that was so lovingly provided for his CA care-team. Let's all buoy them up as best we're able as Chester decides his next strategy.
As to the more mundane developments - I've closed out Chester's Medical Expenses account and am forwarding him the money for use in Holden. Not being able to oversee its administration, I've asked that it be used solely for his Medical Expenses there to honor the spirit in which those donations were originally given (and I have no doubt that his family will use it appropriately)...
His loft space in Emeryville is empty now, awaiting a thorough cleaning before surrendering it back to management. It's a strange and hollow space now that he's in Missouri - it was so FULL of his life and energy for the past year that seeing it "naked" is a mild shock. But it did serve its purpose - beautifully! - by allowing him a relatively unfettered and mobile year of shelter for he and his various companions. I'll be personally grateful to both building managers, Evonne and Frank, for all their caring and the extra miles they went in attending to Chester's needs. Our boy certainly has had (and continues to have) angels on his shoulder!
I want to thank Dawn as well, for continuing to post here on her brother's settling in. For those of us now distant to him, it's reassuring to hear - however briefly - the news of his progress. (Hint: you can write as much as you like, Dawn!!!) xox Jaime

Medical Connection

2006-10-13T20:24:00.000-07:00

Dawn here again. Chester saw his new oncologist yesterday, and he was
really impressed by her. Dr.Moormeier told Chester and I about a different chemotherapy drug that has a lower percentage of side effects,
but a lower percentage of working as well.
Chester is considering his options, and will be seeing Dr.Moormeier again soon.

Swimmingly Good Times

2006-10-07T19:41:00.000-07:00

Hi all! This is Dawn (Mr.Cheeky's sister) reporting from MO.Chester took me to the pool for the first time today, and I started learning how to assist Chester in his exercises. I can tell you that he has not forgotten how to teach, and he was wonderfully patient with me. I was one of Chester's first students in life many years ago, and I feel very blessed to be learning from him once again.We are looking forward to making as many wonderful memories as we can in the time he will be here with his first family, and so thankful that his chosen family is still close in heart, if not in person. I will do my best to keep you all informed of what Chester is experiencing as the days go by, and we will not forget the contributions (time,love,work,thoughts,prayers,assistance)you all have made. Thank you for never forgetting about Chester!!!Dawn

Moon Musings

2006-10-07T08:21:00.000-07:00

Chester was up at dawn this morning to watch the full moon. Together, we sat and watched the moon glow as the sky changed "technicolor". For over and hour and a half, we watched the moon's slow descent as the nocturnal and diurnal predators change of shift gave the smaller critters their brief window of opportunity for their own foraging. It was a time of reflection, wonder and deep appreciation for nature. It was also a time to consider how many more full moons he will be able to witness in this body. He states he has lived a full life and want to live more, but wants to preserve a quality of life where he can fully enjoy the time he has left.

It was a very precious time together with the wonder and mysteries of life and moon cycles.

Fried Froglegs and Moving Boxes

2006-10-06T21:38:00.000-07:00

Its been a crazy busy week. The California crew has been packing up Chester's studio since we left on Tuesday. Tomorrow morning, the moving van arrives at the Loft to pick up his belongings. Poor moving guys have no idea what they are getting into when they start loading all of Chester's boxes of crystals!

Here in Missouri, we have been hard at work making Chester's space at Dan, his brother's house accessible. Chester's pride and joy has been the new toilet, woohoo! We still need to widen the doorways and pull out shower doors but we are getting there. Chester checked out the community center's pool with his sister Dawn and will start his hydrotherapy there next week. It also has good shower facilities so he will be able to shower off the chlorine and get all gussied up.

Dinner time has meant family and a plethora of good eating. His brother Dan has been fixing some of Chester's favorite foods. We had a mass of fried froglegs last night and we have had elk twice. We have been eating off a huge Hen in the Woods mushroom for days that Dan foraged. Wild turkey and venison have been promised for the days ahead. A definite change from his sushi, but Chester is relishing the dinners lovingly prepared by Dan and he adored the lime pie that his mama made him.

Its been a huge change but Chester is responding with grace, courage and patience as Chester and his family adjust their schedules and lives to support this stage of his life. Although the phone continues to be difficult, Chester delights in emails. We have set him up with a laptop so he can continue utilize his email until his computer arrives in a couple of weeks. I leave for Seattle tomorrow morning, but I will return to Missouri when his belongings arrive, to help Chester and his family get sorted and settled. I will be showing his family how to help Chester blog so he can keep you up to date.

Flying Home Now

2006-10-03T13:06:00.000-07:00

Well, if the airlines are running on schedule this morning (and I haven't any reason to think they aren't), Chester and Bean are in the air at this moment, heading to Kansas City, Missouri. The drive from that airport to the family farm is about 60 miles, where Dawn, Mom, Dan, Nancy, Chet and others will welcome their boy back home. Bean will be staying for a few days to help make the transition as smooth as possible. She's a whiz with Chester, a soothing presence that calms him easily when his feathers get ruffled. She's also a medical professional who knows blood-pressures and understands medications and is great at dealing with the ins-and-outs of bureaucracy; to see her in action is very reassuring... It helps me to know he's in good hands now that he's out of mine.
The past week has been a whirlwind for us all, so you'll have to forgive our not returning phone calls, etc. We had our hands full sorting through and packing Chester's belongings, which often tired him out. Though his hydrotherapy sessions with Gil over the past couple of days helped soothe that upheaval. Cheeky loved being back in the water where he could move with more ease, elegance and efficiency. ;-]
He and I dined twice at Kasuga - he had to get his fill of (the owner) George's warm hospitality and melt-in-your-mouth delicacies - before finding himself back in the midwest, land of burgers and fries. Last night, Bean, Chrys, Gil and JD joined us there and a rousing time was had by all. The raspberry, lychee and plum sake's lubricated the proceedings quite nicely.
And if you ever have the opportunity, try some raspberry sake. It was everyone's favorite, hands down....
As to the more mundane details - the rest of Chester's belongings will be packed and picked up by movers (thanks to CM's sister-in-law, Nancy, who cut a deal for us with a moving co!) Friday afternoon and delivered to him in Missouri between the 16th and 20th, if all goes as planned. Naturally, we'll be "energizing" things for a landing sooner than later.
The money donated to Chester's medical expenses is going to be forwarded to a new account in Missouri, which he'll open once he gets his bearings. It's an unexpected blessing, because - thank you bureaucracy! - Chester can't open a Medicaid Acccount in Missouri until they receive a letter from Medi-Cal of California at Chester's new address there! So there could be some doctor's appointments and supplies and the like that will need to be retroactively re-imbursed by the state... The $2000 still in that account will come in handy. THANK YOU EVERYBODY!
I'm not quite sure what will happen with this blog. I hope that we'll have updates from the various family members as our Cheeky B continues his travel...
I'll do my best to toss in what I know and hear from the boy.
(Boy, that feels SO strange to say! Chester's been such an integral part of my life since we met 6 years ago that living without him is something I just can't yet envision. )
So... You're all basically up-to-date.
THANK YOU ALL from the bottom of the all the hearts on Cheeky's California Team!
We couldn't have done it without you! xox Jaime

Travel Plans

2006-09-27T11:24:00.000-07:00

Hello Everyone - Jaime here.
Wanted to update you on the current plans to relocate our boy back to his family in Missouri. Chester will fly back this Tuesday, October 3, accompanied by the wonderful Bean, who's flying down from Seattle on Saturday in order to travel with and settle him into his new surroundings. Chester will be living with his brother Dan and wife Nancy while the family oversees the building of his permanent living space close to the house.
As you can imagine, the pace here has picked up - what with packing, visiting doctors for a check-in before his departure, refilling Rx's for the transition time...
We (Chrys, Chester and I) had a final visit with his neuro-surgeon, Dr. Tang, this past Friday, as we wanted his input re: the latest MRI. Sadly, he concurred completely with Dr. Chang - that the tumor has indeed doubled in growth and is now compressing most of the healthy tissue in the brain, which has resulted in a growing inability to speak without great effort, as well as a decrease in his motor functions. Dr Tang also gave a "3-6 month window" - and recommended that Chester seriously consider one of the alternate chemotherapies (though there is no guarantee that any will be more than 50% effective and all of which carry a great risk of depleting his current state of ability with deleterious side effects). While this may buy him some more time, the risk of losing his current "quality of life" is quite great - so the decision is a weighty one.
It is for this reason - second only to his lack of companion care - that we decided to relocate him to Missouri more quickly than we'd originally planned. His doctors feel that - should he want to give another chemotherapy a try - it needs to be done immediately, and in a place where he is "settled" enough to endure whatever side effects may occur.
So, we have six days left of California time.
Chester wants to spend some of that time visiting some of his favorite places for a last look-see and I've asked him to put together a list for this.
He has also asked that he not be inundated with requests for a "final visit or phone call" from friends and well-wishers. "They've had time. It's too late now," he's said - as visitors and speaking, no matter how well-intentioned, deplete his energy quickly, which he needs now to bear up under the strain of packing and relocating.
Emails, however, are most welcome.
My personal request is for all of you reading this to support Chester and his team again energetically during these next few weeks. Just as you all contributed mightily to his successful (outstanding!) recovery from his initial surgery, we need your loving, supportive web of intention for this next phase. Please pray that things move as smoothly as possible. (I'm already seeing the results of this, but never take it for granted. "Angels on Our Shoulder" has been our motto throughout this past year, and we need now, more than ever, for that maxim to continue!)
On that note, I'll sign off and head over to the loft - where we're sorting, packing, stuffing, boxing, consigning, bequeathing, and just generally getting down to essentials for the move.
A million thanks, in advance, from everyone on Chester's Calfornia Team...

Reality Bites!

2006-09-16T14:49:00.000-07:00

As you might expect from the title, Chester got some bad news from his neuro-oncologist at UCSF yesterday. Dr Chang compared the MRI done last week with the previous one (done last June) and found that his brain tumor has doubled in size and is making new inroads into healthy tissue, despite two rounds of chemo inbetween.
Unfortunately, this is not particularly unexpected - my own reading on the subject revealed that the Temodar has an efficacy average of 7 months, so Chester has - again - beat the odds as far as timing goes, but has also "hit the wall" as far as it controlling the tumor growth.
The worse news is that medicine has very little to offer him now. There are two further chemo possibilities, but both have serious side-effects and both have been shown to be less than 50% effective in combatting the cancer. As Dr Chang said, his decision now is whether to opt for quality of life in the time remaining by doing nothing and letting the disease run its course, or to chance the other chemotherapies and (most likely) lose quality while buying a bit of time in a further depleted state.
So our Cheeky One has to weigh these factors and make his choice.
Please be aware that he has asked that you do NOT try to advise him in this matter. It is fully HIS decision and we all need to respect whatever that choice will be.
As you can imagine, this has thrown our plans of relocation to Missouri into an even bigger tornado than the one that was forming prior to the appointment yesterday. We'd set a target date of October 15 to send him back (even though his new home won't be ready for another 8-12 weeks), but Dr Chang has recommended that he go even sooner in order to accomodate his choice (connect with a new Oncologist who can provide the chemo or connect with a local Hospice to provide support and palliative care to keep him comfortable until he passes).
Sister Dawn has scoped out handicapped-friendly apartments for him to occupy in the interim and we are waiting until Monday (when she views 2 more choices) to make that decision. The family wants to go ahead with the new permanent home on the farm site regardless of how much time he has left, which is good since we are already $3000 into it and would lose that down payment were we to cancel the deal.
However, we are operating under the assumption of a sooner departure to Missouri, no matter what decisions are made as to his treatment or living space. He wants to return home where his family can care for him since we're no longer able to provide companionship for him here in California. (And THANK YOU to those of you who did that work - you'll never know what a contribution you've made!)
So there you have it. The clock is ticking more deliberately now and it's our job to make sure his remaining days are as optimal and comfortable as we can make him.
Please send your prayers and energy his way as we try to make these final weeks move smoothly. Keep in mind that he needs your support now in a most crucial way - and does NOT need to hear about your pain/heartache/disappointment at his status. He needs every bit of energy for himself as he readies for this final test of his mettle.
Just LOVE HIM unconditionally. It's the most any of us can ask. xox Jaime

Birthday Pic and Relocation Plans

2006-09-12T17:02:00.000-07:00

Hello everyone - Jaime here.
The California Team of care-givers for our favorite Upstart met this afternoon for a conference call with Chester's sister, Dawn, to gauge the progress of Chester's relocation.
Because we have no more companions after October 15, Chester will be moving back to Holden, Missouri as of that date. His housing on the family farm will not be completed by then, so Dawn is looking into handicapped-friendly apartment units in town in which to install Chester until his place on the farm is completed (we're hoping by mid-November or early December). This struck us as the most easily accomplished of our limited options (nursing home here). Cross your collective fingers that she'll be able to find an appropriate landing place for the Cheeky One.
This will also be your last opportunity to visit with Chester in California - so if you've been holding out for a visit, please step up and let us know. We have one big hole in his companion care (this Saturday, 3pm to Thursday at 2pm) which we're desperately trying to fill. Naturally, we'd prefer an "overnighter" since he most needs assistance dressing in the morning and undressing at night - but we'll take shorter visits if you're able. Or perhaps you'd like to prepare and share a meal with Cheeky, or just spend a morning, afternoon or evening getting in a final visit with the boy before he returns to Missouri... Whatever you're able to offer, we'll do our best to accomodate you! Please call or email ASAP if you've got some time available!
We'll also need volunteers to help with packing up his apartment the first weeks in October, so if you're good at that and have some time and energy, please give a shout!
While we don't particularly want to send him back to family, it's become clear that it is our only viable option, short of a nursing home - which he definitely does not want to inhabit! So our plans continue apace to build a place for him at the family farm (and for which we are accepting donations!!) and relocate him into safe hands for the interim...
As he has said: the adventure takes a new turn - and Life continues!
As always - thanks to everyone who holds our best interests forefront in their intentions!Bi

Another Milestone

2006-09-08T12:07:00.000-07:00

Hello All -
Just a reminder that today is The Cheeky One's 53rd Birthday!
We'll be celebrating tonight at Chester's with a small gathering of friends... By all means, send an email or give a call - Good Wishes are always welcome!
xox Jaime

One Wild Year

2006-08-30T15:32:00.000-07:00

Dear Friends,

Today marks the One Year anniversary of Chester's brain surgery. We have been spending the day looking back, remembering the details of this incredible and difficult year. We are also looking forward, beginning to weave the story of the next chapter in Chester's life.

One year ago today, about this time (3 in the afternoon), I sat in the waiting room of Alta Bates with Marilyn, Jaime and Xo. The four of us had been there all day, holding the tethers to Chester's life as he underwent a major operation to remove the large primary tumor near the motor cortex of his brain. It was a long day of waiting, as each of us sat and meditated, knowing full well that he may not survive the surgery. We also sat and waited for the diagnosis, for until they removed the tumor they could not tell us for sure what type and severity Chester was confronting. We all felt it as Chesters surgery came to a close and he began stirring awake (we would later find out that he woke up laughing, so happy to be alive!). I remember Dr.Tang coming down the hallway and telling us that the surgery was successful, but that it was a very large Glioblastoma Multiformae tumor and that Chester, at best, had a few months to go. The next day at Chester's bedside, Tang told us that he had removed some of the motor skills section of the left brain and that Chester would not walk again. I remember sitting with Chester as we heard this diagnosis, my hands on his right leg, feeling all the vital energy still streaming through his "paralyzed" side. I knew then that the doctors did not know who Chester was or what he was capable of, and feeling deep in Chester's bones the determination to reclaim and live as fully in his body as was possible. Chester's breath was deep and full (restored after surgery- the night before as I sat and read Walt Whitman with him, Chester's breath was less than 50%). Chester's humor and spirit were fierce and vibrant. As we sat in the noisy, chaotic Intensive Care ward, I remember dropping into the breath and feeling into the miracle of his survival, and that it was only just beginning. We thus began our journey into post-surgery rehabilitation, beginning an amazing year of "choosing life," Chester coming back home into his body with even more mindfulness, consciousness and life-affirming spirit than he had carried with him before surgery.

I've spent the past week reflecting on this year, on the sheer awe of finding ourselves alive and in good spirits as this year cycle completes, I have been very aware at the dedication Chester has made to the act of living. Deciding to have surgery was the first affirmation, surviving it the second. And each day that followed required a conscious decision to live and remain embodied. How easy it would have been to despair and not take that next step. What courage to stay embodied and awake while navigating the mysteries of living without some very vital brain tissue, and with an entire hemisphere of the body disrupted. What trust to allow friends to accompany the process and provide support and care. I sit in sheer awe of it, my body full of the year's experience and exhaustion, feeling proud to know a man like Chester and even prouder to have witnessed an entire year of fierce commitment and embodiment. I am aware that Chester must be mindful of each movement, each step and each word that he attempts to bring forth. And that this moment-to-moment mindfulness is a teacher for us all. The mysteries of our bodies run deep. We are both resilient and vulnerable beings. And every day we can choose to dedicate to living fully, breathing fully, giving and receiving care, surrenduring to the unknown and dancing in the miracle of it all. It hasn't been an easy year, but surely an awe-some one.

After a sushi feast with friends (how else to celebrate such a fishy year?), Chester and I are preparing to go to the pool. His head wound took eleven full months to heal, and so now finally submersion in water and all of its healing is available to him. This allows Chester a fuller exploration of what his body is now capable of, and his walking has much improved after only 6 sessions in the pool. I am looking forward to moving with him in the water, and know that the commitment to reclaiming and living fully in his flesh will continue into the coming year.

As we begin to prepare for Chester's homecoming to Missouri, I hold in my heart the teachings of the past year, and look forward to continuing to learn with Chester as he moves forward into the coming year.

Fatigue, Frustration and Fun

2006-08-25T23:22:00.000-07:00

Chester continues to deal with the residual side effects of fatigue and irritability from his last chemotherapy treatment. The fatigue has kept him from celebrating friends' birthdays in the style that he believes that they deserve as well as keeping from Annie Sprinkle's new show. We were able to do a duo birthday celebration tonight complete with TWO desserts and laughter. Just don't believe a certain somebody when they say they will show their tattoo for $1.98!

The search for companions to keep him safe weighs heavily on his mind and heart. We had to do a bit of last minute shuffling to ensure companion coverage once I leave for Seattle in the morning. We have him covered this weekend but still require your assistance for the following dates:
Sunday September 3rd afternoon through Thursday September 7th afternoon
Saturday September 16th afternoon through Thursday September 21st afternoon

Since the next 10 days are a virtual smorgasboard of companions while I am back in Seattle, Chester has asked me to take on the task of trying to coordinate coverage for the remaining dates in September. Please call me at (206) 321-4414 if you can assist us. Although it is in Chester's best interest to have companions stay at least 48 hours, we are arranging shifts as short as 10 hours just to make sure his needs are met.

In breath,
Bean

Companion Update

2006-08-23T16:43:00.000-07:00

Greetings Friends,
We have finally got companion coverage for Chester for next week. Thank you to those that have come forward to assist.
Unfortunately, we still need more help.
We still DESPERATELY need coverage to keep Chester safe and healthy in September.

Here are the dates/times for which we need your help:
Sunday September 3rd afternoon through Thursday September 7th afternoon
Saturday September 16th afternoon through Thursday September 21st afternoon

Please give us a call at the loft (510) 658-8538.

Future Plans - WE NEED YOUR HELP!

2006-08-23T13:05:00.000-07:00

Hello everyone - Jaime here.
As you can see from the previous posts, we are having a tough time finding companion care for the Cheeky One and desperately need someone to step up for him this Sunday through Wednesday. Those of you who were so impatient to be of assist last year when all of this developed need to realize that this is YOUR OPPORTUNITY! PLEASE HELP!!
In light of this lack of available companion support, I made the hard decision that Chester's living arrangements are no longer workable as they stand. Our options - after some discussion with Chester - were to find a slot in a Nursing Home that could offer round-the-clock assistance should he need it, or to send him back home to Missouri where his family can step into the breach.
At this time, we've opted for the latter and are in the process of raising a second small building on the family farm. This will give him some privacy and allow for the relatively easy companion-care he needs. Dawn, Chester's sister, has been moving heaven and earth to find the right building, investigating concrete pads and radiant floor-heating, doors, windows, etc and today made a down payment on a Quonset-hut type of unit that can be delivered for about half its normal price!
With luck - and an assist from all of you (and the housing/construction gods) - the place should be ready within 4-6 weeks... The real challenge will be to get it habitable before the weather takes its winter turn, so please direct your energy to this huge task getting accomplished in double-time!
We also need to ask for donations from everyone - both for his housing costs and his medical bills. I've purposely NOT asked for further contributions from you all over the past year because I knew there'd be a time when we'd REALLY need it (and not for the incidental "stuff" of living) - and that time is NOW. While I've made application for "charity waivers" to those facilities to which Chester now owes several thousand dollars, none have yet been granted. Additionally, if you've read this far, we now have the additional cost of approximately $20,000 to buy and complete his future home in order to save him from a Nursing Home existence.
PLEASE HELP OUT in any way you can financially by making a check out to Chester which we can apply to his medical and/or housing expense. Any amount is welcome! In addition, if you'd prefer to specifically "buy" a door, a window, a toilet or whatever, we can provide a list of items and their cost for which you could sign up as a contributor.
Begging is never pretty, I realize, but the crunch we've been holding at bay has arrived - and I cannot shout it out any more clearly:
WE NEED YOUR PERSONAL AND/OR FINANCIAL HELP!
PLEASE STEP UP to be his companion in these final weeks in California!
PLEASE STEP UP to help outfit the place he will spend the remainder of his life in on the Missouri farm!
PLEASE, PLEASE STEP UP TO THE PLATE! WE NEED YOUR HELP!!!

Send contributions to:
Chester Mainard
964 46th Street, #131
Oakland, CA 94608

THANK YOU (more than you'll ever know)! xox Jaime

WE NEED A COMPANION!!

2006-08-23T13:03:00.000-07:00

We are still desperately seeking a companion for Chester for Sunday evening through Wednesday evening. Please call us at the Loft if you can help on any of those days (510) 658-8538.

Farm Fresh Food

2006-08-22T11:10:00.000-07:00

Isn't is amazing how good really fresh food tastes when you enjoy it with friends? I returned to Chester's yesterday afternoon with fresh corn, tomatoes and peaches from my house and the farm. With help from JD, I had a summer supper prepared for Gil, JD and Chester when they returned from hydrotherapy (NOTE: Dinner is later on hydrotherapy days :-P) Chester was in high spirits from hydrotherapy and delighted in a simple meal with friends. Late afternoons and early evenings have been his high energy times of late and are great times to arrange a visit with Chester. He topped off the evening with fresh peach cobbler and a visit from Pat, a former student from Maine. The studio was full of laughter, light and love.

Temodar mornings are the low point of his day. He is very sleepy and irritable, cussing out the construction workers across the street when they were making a racket this morning. He slept in until 9:30 and is napping again now. He feels lucky that sleepiness and morning irritability are really the only side effects from his chemo. A small price to pay and usually subsides as the day progresses.

We are still desperately seeking a companion for Chester for Sunday evening through Wednesday evening. Please call us at the Loft if you can help on any of those days (510) 658-8538.

Reflections

2006-08-19T22:36:00.000-07:00

Aloha, All:

You will all know that Bean has taken over the tasks of companion to Chester -- and is doing a really great job. I am a bit embarrassed to have only sent one Blog in the 6 days that I was lately functioning as companion -- but I was a little pressed to cope with the Chester that I found upon my arrival. Not that he was any different in any real sense -- the essence remains, regardless! But, the "rhythm" of his life seemed to me to be sorely disarranged. It took every minute of the 6 days I had with him to put this right. As a result, after several days of "puzzling over" the problem, I have decided that there are some "ground rules" that should be observed by future companions.

First off, Chester is on his own schedule. In deference to him, his companions should alter their own schedules to accommodate his. This means that the evening meal should be no later than 6:30 PM. The purpose of this is that if the consumption is that early, then the inevitable consequence or such consumption will manifest itself before Chester has retired for the night -- an all together to be hoped for result! (Unless, of course, you are really delighted to get up in the middle of the night on an emergency basis to deal with the consequences.)

The second issue is that when the various therapies Chester was receiving before they were stopped, they were stopped because there was no money to pay for them, not because they were no longer needed. Chrys made extensive notes about both speech and physical therapy exercises. These are essential to Chester in order to maintain both his communication abilities and his sanity. He needs reassurance both that he will be able to conquer the intricacies of normal speech, but also that his mind is intact, even if his mouth will not cooperate! I am pleased that he is now frequenting the pool. The more activity the better!

Anyway, I fear this communique will be perceived as too "pejorative" and that is not my intent -- I just want our boy to prosper.

Aloha nui,
Bill

Chemo & companions

2006-08-18T20:09:00.000-07:00

After much confusion and frustration, we were able to get Chester's chemotherapy worked out yesterday. He is back up to his previous dose of 400mg and the resolution of that issue has gone a long ways to ease his frustrations. We started the Temodar today and he has been blessed with only the minimum of symptoms. He was a little irritated in the morning and antsy. He funnelled that energy into cleaning like a dervish. By the afternoon, he was in great spirits and giggling so much over lunch, he had to remember to chew. A care package of yummy muffins from Anne arrived and Chester dug into them with gusto.

The highlight of his day was his second venture into hydrotherapy. He just beams when he returns from the pool with Gil. In the water he feels like he can walk like "normal". He savors the experience and the ease of movement in the water while still allowing space for the grief that this is the only place he can walk like that. As the evening wears on, we spend time with that joy and that grief. He feels like he may have overdone it a bit, but the walking is so precious he pushes himself. It will be an early night tonight.

Tomorrow I fly home for the weekend and commitments in Seattle. I return on Monday for another week with the Cheeky one. Several of you have stepped forward to help as companions for Chester over the next 6 weeks and we are incredibly grateful. We still have several days to fill and we ask again for your help. The most pressing needs are as follows:
Saturday 8/26 9:30am - 7pm
Sunday 8/27 7pm - Wednesday 8/30 11pm
Sunday 9/3 afternoon - Thursday 9/7 afternoon

I will be back again on 9/7 for another week, then I have commitments back in Seattle the rest of the month. We have someone Thursday afternoons- Saturday afternoons for the rest of the month, but need coverage from Saturday afternoons through Thursday afternoons.

If you, or someone you knows would be available to help, please contact us at the loft at (510) 658-8538 or at Chester's email dragonfly@surfbest.net Chester is relatively independent at the moment, and it is a case of assisting him instead of doing for him. I make the meals but he empties the dishwasher, makes his own tea and helps himself to snacks. He did 90% of the laundry today himself. Confusion and dizziness necessitate a companion for safety reasons. Although he handles most of his own needs in the bathroom, I had to twice remind him to fasten his seatbelt. There are some things he is unable to do, like put on his stockings. Even with my physical limitations dueto my MS, I have been able to meet his needs. At this time, being his companion does not require a lot of physical strength. The ability to drive a stick shift is helpful but not required. There are usually others that can assist with his transportation needs. Please do not hesitate to ask us if you have any questions about what being a companion for Chester entails.

Hydro Therapy

2006-08-16T19:53:00.000-07:00

Gil here!
The much anticipated opportunity to splash about in hot water finally happened this afternoon. We got to see some very amazing ballerina moves once the hot pink foam noodle became familiar to our aquatic experience. The Berkeley High School pool is open several times a week; while the football team practices outside, seniors and handicapped frolic in 93 degree water watched over by very competent life guards. Floating gives a renewed ability to stretch and see that leg muscles still respond, walking is done with ease and riding the lift in and out of the pool makes the whole experience truly memorable.
Now after a quick meal at home, we're zooming around the apartment, terrorizing the entire complex and it feels like we've added some very decadent topping to an already excessive dessert. It sure seems like hydro therapy will be a much welcome activity for taking the stress out of long days in the chair and it's a lot easier than climbing the stairs. Next time we'll capture the Hawaiian print swim togs on camera to share with all of you.

A Call for a COMPANION!

2006-08-11T17:19:00.000-07:00

Hey everyone -

Chester is in need of a companion(s) for:

Saturday morning (9am) Aug 26 through Thursday evening Aug 31 (7pm).

PLEASE call (510/658-8538) or email Chester at dragonfly@surfbest.net to volunteer -

WE REALLY NEED YOUR HELP!

Thanks in advance! xox Jaime

Ultrasound Sound

2006-08-10T15:09:00.000-07:00

Aloha All!

I am "blogging" today under the name of Chester -- mostly because, despite the left-handed mouse, the wildly tilted keyboard and the fact that Chester uses a Mac, it is still easier than hauling out my laptop.

I arrived Tuesday at about 9:00 PM to be greeted by Chester and Laura. Typical of our boy we were up until after 1:00 in the morning. I was informed that I needed to get Chester to Herrick to the vascular lab at 1:00 yesterday for flow studies of the right arm and leg to rule out clots. Well, we got him to Herrick exactly at 1:00 only to discover the Alta Bates vascular lab is at the other, main campus. Upshot is that we were about 1/2 hour late, but they still took him and did the study. The good thing about going to Herrick was that Chester ran unto one of his occupational therapists, June, and was able to show how really amazing he has stayed.

Anyway, the ultrasound studies did show some abnormalities of both the arm and the leg, but it was the feeling of the technician doing the study that these did not represent anything "new or on-going." I was able to watch the entire procedure and agree that, while there were some abnormalities, they were all in superfiscial rather than deep veins and thus represent a more localized process -- perhaps even just some scarring from the prior events.

Today we have been shopping. But, not before Chester took me for a short walk to climb a few stairs and meet Marilyn as she was bringing latte for all around (Chai Tea for them, the full octane coffee for me). This afternoon we are being domestic -- doing some laundry, I will spend some time ti throw Chester on the table for some energy work in a few minuets and then we might think about going out for some Sushi (or not -- will depend on how he feels).

Aloha nui loa,
Bill

Uhm... "not quite"

2006-08-07T11:11:00.000-07:00

Hello everyone - Jaime here...
I just wanted to "revise" the information in the previous post by Barbara... because something she wrote isn't quite right and it's getting people's hopes up prematurely.
Dr Chang at UCSF never declared Chester's tumor "dead" (i.e. inactive, cured, etc). She said that she saw "none or very little growth" of the main tumor between the February and June MRI's. This was particularly good news because of Pester's inability to take any chemo during that time - but it certainly did not mean that Chester was out of the woods in regard to the cancer. (Additionally, the tumor is only the main site of the problem - Chester's cancer is called "multiformae" for a good reason: it spreads out from the main tumor in "fingers" or "webs" throughout the brain, which cannot be surgically removed. We are assuming the chemo is helping control this growth - but those of us caring for him are definitely witnessing some further deterioration in his ability to speak, his energy levels, etc.)
I hate to disappoint those of you who thought he'd beat this devil, but need to make clear that he is hardly "out of the woods." At best, he is in a relative "holding pattern," but that is a fluid description and varies day-to-day. Most days are still good, thankfully - and we hope they continue.
In the meantime, Chester and I will be having a conference with his sister in the next day or so to discuss his future living situation - and I'll update you on that once it's done. But please note that WE ARE STILL IN NEED OF COMPANIONS for the dates mentioned previously (Aug 19-20 & Aug 26-Sept 1, with other dates to be determined) - so if you've been waiting for your turn to "do" for Chester, now's the time to step up!
Again, sorry to deflate anyone's assumption that "all's well" with the boy. Sometimes the only thing one can say is that "reality bites" - even if not as hard or thoroughly as before!
Most importantly - DON'T STOP your healing work! It's obvious that it's having effect - it just hasn't "cured" our favorite patient! xox Jaime

Message From Barbara

2006-08-02T21:22:00.000-07:00

Aloha all, I received this message in my e-mail but have not found it yet on the Blog. Not sure what is going on with that, but I will try to post it to you through my connection with the Blog. It's too important not to go out! Aloha nui. Bill

Hello Everyone,This is Barbara Carrellas.

I am here visiting Chester for the weekend. Chester and Laura and I would like to catch you up on what’s been going on since Marilyn’s last posting.

First, here’s the health update. The good news is that the tumor in Chester’s brain has been declared officially dead by Dr. Chang, the oncologist at UCSF. Apparently, the radiation killed it. However, there is always the possibility that a renegade glioblastoma cell is lurking somewhere, hence the reason for the round of chemo Chester took the first week of July. He will be taking another round at the end of next week. Then he will have another MRI at the end of August and will see Dr. Chang on 1 September. As we approach the first anniversary of the surgery to remove the tumor, I think it’s important to acknowledge the miracle that has occurred here. As Chester reminded me yesterday, most people (of course, we know Chester is not most people) survive only 3 to six months after diagnosis. What a vortex of healing energy we have all co-created! And three cheers for our team leader---little Pester---who has danced us all along behind him so inspirationally.

I know you are all wondering what will happen now that Chester is stabilized. Laura will be leaving to return to teaching on 8 August. Bill will come in from Hawaii for the next week. After that, Bean will be here from the 15th to the 18th of August. ***We need someone who can be here the weekend of 19 20 August.*** Bean comes back from the 21st to the 25th. ***We also need someone from 26 August through 1 Sept.*** Bean may be able to come back for two more weeks sometime during the first part of September. ***We need people to cover the rest of September.***

The future plan is that Chester will go to live in Missouri with his sister and mother when they have completed construction of a cabin for him on their property. Chester has showed me photos of really sweet little prefab houses that can be built to his specifications and special needs within a reasonably short period of time (approximately 4 months) and for not much money, all things considered.

The challenge now is where Chester will live between September and when the cabin can be completed. By the time all the logistics are worked out and the cabin becomes a reality is at least six months away, we figure. Laura and Jaime and Chester are investigating options for this interim period, ranging from public housing in a residential hotel to board-and-care facilities. The lease on the apartment here in Oakland is up at the end of September. Will the landlord rent on a month-to-month basis? And is this even practical? We don’t know yet.

In the meantime, Chester is on the waiting list for in-home services (people who come during the day to cook and clean) but he has been waiting for this since January, so we can’t count on it. ***Please, please, if you can spare even just a few days in August and September, please email or call Chester. At the moment, we simply need to get through September. Then we will know more and can go from there.***

As for Chester’s overall health and progress: Jaime previously mentioned that Chester had a seizure on 30 June. The doctor raised his anti-seizure meds which prevented further seizures, but also had the effect of lowering his blood pressure. So he was experiencing dizziness when he lay down. (Another Chester paradox, as most people get dizzy when they stand up. That’s our boy. . . ) The good news is that this meant he could lower his blood pressure medicine which has reduced the dizziness, although not eliminated it entirely. Best of all, his blood pressure---which had been a real concern---is finally stabilized at a healthy range.

Chester has been wanting to get off of his steroid medication because it impedes healing. So he has started to taper off the steroids and has already reduced his daily dose by one pill. He is experiencing the symptoms of withdrawal, which include fatigue, pain in his right leg and swelling in his right leg and arm. When Chester asked Dr. Tang (the neurosurgeon) how quickly he could taper off the steroids so that he could eliminate them altogether, Dr. Tang replied that if he went off them completely he would be dead! (Don't ya love a direct answer? Chester did.) Chester accepts that he will probably be on steroids for the rest of his life, but the good news is that the rest of his life is now probably years, not months!

Now that Chester has a future, he is looking forward fulfilling some long desired goals. When Gil gets back from Paris in a week or so, Chester is going to go swimming!!! The Berkeley High School pool has a lift that will lower him into the water. Gill will be there for swimming support. Chester has been longing to experience being submerged in water (he can only take showers), so this is truly a dream come true. And, thanks to the necrosis of the tumor (the use of the word “necrosis” proves Chester is really participating in the writing of this post, doesn’t it?) this is only one of many dreams to come true in the future.

Now a few words about Laura, who has been here all summer. Laura is positively the most cheerful, fun, loving person I have met in a very long time. She is really having a good time here. She says she has learned something new every single day for the two months she has been here. By the way, her birthday is Monday, 31 July so please send cards and good wishes to this amazing woman!

That’s it for today. I am about to go take Chester’s order for a sushi feast from Katsuga! Blessings be to you all.

Love,

Barbara

Update from Chester, Barbara and Laura

2006-07-30T16:44:00.000-07:00

Hello Everyone,

This is Barbara Carrellas. I am here visiting Chester for the weekend. Chester and Laura and I would like to catch you up on what’s been going on since Marilyn’s last posting.

First, here’s the health update. The good news is that the tumor in Chester’s brain has been declared officially dead by Dr. Chang, the oncologist at UCSF. Apparently, the radiation killed it. However, there is always the possibility that a renegade glioblastoma cell is lurking somewhere, hence the reason for the round of chemo Chester took the first week of July. He will be taking another round at the end of next week. Then he will have another MRI at the end of August and will see Dr. Chang on 1 September. As we approach the first anniversary of the surgery to remove the tumor, I think it’s important to acknowledge the miracle that has occurred here. As Chester reminded me yesterday, most people (of course, we know Chester is not most people) survive only 3 to six months after diagnosis. What a vortex of healing energy we have all co-created! And three cheers for our team leader---little Pester---who has danced us all along behind him so inspirationally.

I know you are all wondering what will happen now that Chester is stabilized. Laura will be leaving to return to teaching on 8 August. Bill will come in from Hawaii for the next week. After that, Bean will be here from the 15th to the 18th of August. We need someone who can be here the weekend of 19 & 20 August. Bean comes back from the 21st to the 25th. We also need someone from 26 August through 1 Sept. Bean may be able to come back for two more weeks sometime during the first part of September. We need people to cover the rest of September.

The future plan is that Chester will go to live in Missouri with his sister and mother when they have completed construction of a cabin for him on their property. Chester has showed me photos of really sweet little prefab houses that can be built to his specifications and special needs within a reasonably short period of time (approximately 4 months) and for not much money, all things considered.

The challenge now is where Chester will live between September and when the cabin can be completed. By the time all the logistics are worked out and the cabin becomes a reality is at least six months away, we figure. Laura and Jaime and Chester are investigating options for this interim period, ranging from public housing in a residential hotel to board-and-care facilities. The lease on the apartment here in Oakland is up at the end of September. Will the landlord rent on a month-to-month basis? And is this even practical? We don’t know yet.

In the meantime, Chester is on the waiting list for in-home services (people who come during the day to cook and clean) but he has been waiting for this since January, so we can’t count on it. Please, please, if you can spare even just a few days in August and September, please email or call Chester. At the moment, we simply need to get through September. Then we will know more and can go from there.

As for Chester’s overall health and progress: Jaime previously mentioned that Chester had a seizure on 30 June. The doctor raised his anti-seizure meds which prevented further seizures, but also had the effect of lowering his blood pressure. So he was experiencing dizziness when he lay down. (Another Chester paradox, as most people get dizzy when they stand up. That’s our boy. . . ) The good news is that this meant he could lower his blood pressure medicine which has reduced the dizziness, although not eliminated it entirely. Best of all, his blood pressure---which had been a real concern---is finally stabilized at a healthy range.

Chester has been wanting to get off of his steroid medication because it impedes healing. So he has started to taper off the steroids and has already reduced his daily dose by one pill. He is experiencing the symptoms of withdrawal, which include fatigue, pain in his right leg and swelling in his right leg and arm. When Chester asked Dr. Tang (the neurosurgeon) how quickly he could taper off the steroids so that he could eliminate them altogether, Dr. Tang replied that if he went off them completely he would be dead! (Don't ya love a direct answer? Chester did.) Chester accepts that he will probably be on steroids for the rest of his life, but the good news is that the rest of his life is now probably years, not months!

Now that Chester has a future, he is looking forward fulfilling some long desired goals. When Gil gets back from Paris in a week or so, Chester is going to go swimming!!! The Berkeley High School pool has a lift that will lower him into the water. Gill will be there for swimming support. Chester has been longing to experience being submerged in water (he can only take showers), so this is truly a dream come true. And, thanks to the necrosis of the tumor (the use of the word “necrosis” proves Chester is really participating in the writing of this post, doesn’t it?) this is only one of many dreams to come true in the future.

Now a few words about Laura, who has been here all summer. Laura is positively the most cheerful, fun, loving person I have met in a very long time. She is really having a good time here. She says she has learned something new every single day for the two months she has been here. By the way, her birthday is Monday, 31 July so please send cards and good wishes to this amazing woman!

That’s it for today. I am about to go take Chester’s order for a sushi feast from Katsuga! Blessings to you all.

Love,
Barbara

Hello from Marilyn

2006-07-09T21:29:00.000-07:00

Hi there everyone in Chesterville,
I had promised Jaime that I'd do a post, and I'm only a week late. That is quick for me, my sister is still waiting for her birthday card (May birth). I've been thinking about what to tell you, and I feel that I should give the "State of the Chester Address." There has been a lot going on here recently, and its had a profound impact on Chester.

The big question is: Can we find people to continue to come stay with Chester? Not being able to find someone to be there the weekend that Laura had to be away was a real wake up call for all of us. When Jaime had his reaction, I realized that we had not been addressing the situation of long-term care. I don't know about you, but I really did not think beyond the "yea, he is surviving" and then moving into the "yea, he is thriving" mentality. One of the "states" of Chester is that he does not have the ability to think into the future for himself. I realize now (more clearly in the last couple of weeks that before) that it must be brought to his attention so that he can start making choices for himself, especially as to how his life is taking shape. It is very difficult for him to make decisions, especially quick decisions. It moves him into confusion. Its all part of the brain disfunction that he is now struggling with on a daily basis. Communication is just part of it. He must be given time.

Communication creates a state of frustration in Chester. He knows what he wants to say, but getting it out sometimes takes time... And patience... On both our parts. My favorite game is to take what I think he is trying to say and make it into a funny sentence. He laughs most of the time... The occasional grump is there... Usually on days where things have not gone smoothly for him, and his frustration level is high. Or when he is not feeling good. He has been experiencing a lot of pain from hemorrhoids, and as anyone who has experienced constant pain can tell you, it can take over your life. He has been dealing with it well. He is a very genial presence most of the time, despite the pain. (Just for you to notice, I did not make any comments about 'pains in the ass.')

The one person who has been thinking about the future for him is his sister Misty Dawn. Dawn and their mother live in Missouri, and she has been looking into having a small bungalow (prefab barn) built on their property. He would have his own place, they would be able to care for him, but he would also have privacy. But that all takes time to get it set into reality. This is a major possibility, along with others. A Nursing Home. Last resort only, and he knows that he would die if put in one. There is a wide gamete of possibilities, and I ask you to let us know any you might think, dream, or manifest in your heart/mind/spirit.

The time I spend with Chester is trying to find out what he might need/want, and making him laugh. He brings out the best in me and the worst in me. The mixture creates fun and laughter. He is still a healer. He is still naughty. He is aware of his situation being out of his control. He needs to rely on other for his daily needs. And this for a man who was extremely independent. He worries about having seizures, so has been limiting his excursions into public. He can not stand for his right side (nor right shoulder) to be touched. He gets strange sensations when touched in those areas. He loves tapioca and rice pudding. He no longer can tolerate spicy food or really cold food. His favorite food right now is a combination of mashed potatoes, celery heart and parsnips, yes, all mashed together (try it, you'll like it). He just finished his first round of chemo since stopping the drugs so his head wound could heal. I think he will have another round (5 days) and then get another MRI.

That is all I can think of at the moment. If it seems a bit scattered, well that is the 'state' of Marilyn right now. I always blame everything on menopause, cause I can, so that is my excuse. I hope this finds everyone well and in good spirits. Our spirits are connected through Chester. My love goes out to you, those I know and those who I've yet to meet. Be well. Marilyn

July 4th - Afternoon Party

2006-07-04T14:17:00.000-07:00

Hello everyone, and a Happy Fourth to our US contingent. Jaime here (at Chester's) with a fuller update of the news of the past week.
Chester met with his neuro-oncologist, Dr Chang at UCSF, a week ago today for a comparison of his most recent MRI with that of his last one (April) and got GREAT news. Seems that the tumor is showing only minimal growth in the intervening months - which is especially good, considering that he's had no chemo in that time (we were waiting for the infection in the bone-flap to clear up, which it has - though Chester must continue the anti-biotic course to keep it under control). Dr Chang was particularly delighted at this recent meeting, considering how very concerned she'd been at the prior appointment (again, due to the infection). Her recommend was to go ahead with the latest round of Temodar - and another round next month - to be followed up with a fresh MRI and another "comparison-meeting" in September.
Today is day 3 of Chester's current chemo round and he proclaims that he's "doing very well" with it. He is, in fact, chopping bok choy at the moment, making his favorite "bok choy & fennell" salad - celebrating the holiday dressed in bright orange t-shirt and monkey-emblazoned pj-pants. The side effects have been minimal - a touch of diarrhea for which he downs homemade blackberry shakes as antidote, and, happily, no stomach upset whatsoever!
Chester wanted me to explain that his recent posts take quite a bit of effort - and he apologizes for their being brief and slightly muddled in context. Writing a few sentences that take you or I a couple of seconds takes our boy several minutes, sometimes stretching into hours, of effort. But, as he's progressing in self-expression, he's also making good progress with the special "Frog Pad" one-handed keyboard given to him by Xo - so there are several levels of satisfaction to be gleaned from his various efforts. (And the rest of us can help fill in the "blank spots" for y'all).
The Cheeky One did have a small seizure one evening last week... It lasted for about 2 minutes, right after he'd hung up from having a laugh-fest with Marilyn. He didn't black out, which is good - just "rode" it safely to its conclusion in his wheelchair, which he'd managed to wedge between his bed and massage table for additional stability. Thankfully, he's getting more comfortable with these - if one can express it like that ... seizure cannot be a particularly "happy" experience - and knows that they're usually of short duration and kept pretty much in check from the two meds he's taking (Keppra & Trileptal). His blood pressure is quite good these days (average 125/80), and the diuretic is keeping the swelling in his right leg to a minimum... So, we're having a good run of it at the moment.
On the other track - his companion care - we are still faced with the decision of whether to move into a nursing home in early August, or for him to return to Missouri where his family can care for him on a daily basis. Neither is a particularly satisfactory development, but we've got to deal with the reality of his having no one to be his companion after the first week in August. (While I've been able to get some much-needed rest since my last posts, those of us who've been his primary care team are flagging and needing reprieve from the responsibility... It's been over a year since this began - his first facial twitches began April 15 of last year and we're rapidly approaching the first anniversary of his tumor-ectomy on Aug 30.) I personally HATE the fact that we're not all able to be super-human for as long as it might take, but age and reality have a way of saying "tough noogies" about not liking this. So - before any of us go "nose-down" from the demand - we need to put other options in place... and y'all are now updated on that front. (We have two different full-care facilities in Berkeley to check out as possibilities for his relocation and will keep you all updated on that front as info develops)...
Well, Chester's party is taking off - guests arriving and laughs beginning - so I'll sign off. Hope your week's off to a grand start - and, if you're celebrating the holiday - hope it's safe and enjoyable! xox Jaime

Apologies and "Progress"

2006-06-24T10:04:00.000-07:00

Good Morning, everyone. Jaime here again...
You'll have to forgive my meltdown post from yesterday - things seemed to me at a calamitous crossroads when I wrote. After some discussion with Chester about the companion situation, I got smart and called the wonderful Gayle, the Social Worker at the Cancer Center and had a meeting with her to explore resources. While there are only a couple of avenues available to us, there are alternatives come August, when we will no longer have a friend or family companion available to us. (One of my jobs in overseeing Chester's care is to plan ahead - and I could clearly see trouble coming not too far down the road).
So - the first (and pretty useless) alternative is for Medi-Cal to provide "some" companion care - with a maximum of between 30-40 hours per week - by people in their employ. This would consist mostly of intermittent oversight - cooking, cleaning, bathing, etc - but would not meet our practical need of having someone available 24/7 as has been the case up til now.
The second and most practical solution will be finding Chester a bed in a nursing home where he'll be overseen by a nurse's aide in a semi-private room, with a nurse on hand for any medical emergencies. Because he is in relatively stable health and does not need extraordinary attention at this point, Gayle felt Chester would be relatively easy to place in a facility somewhere in the bay area. While not optimum, in that it will provide no real privacy or independence, it is the best that can be managed under the circumstances.
The third alternative - and again, one that is not optimum - is for Chester to return to Missouri and live with his family, who can "tag team" one another as his caregivers.
We'll have to play these options by ear, so to speak - but with a companion-less future looming, we'll need to have things in place for this eventuality.
On a different note, Chester had a new MRI this past Wednesday morning, and was due to see his doctor at UCSF that afternoon for a comparative reading of this new scan and his previous scans in order to determine what's going on in his head. The contrast used in the procedure, however, gave the boy a bad case of diarrhea and that, coupled with little sleep and the extreme heat of the day, caused us to cancel that appointment. However, the report that came with the films states that there is no appreciable growth of the cancer since his last MRI!
That gave us a bit of relief, since several of us have noticed that Chester's speech and general mentation has "slowed down" in the past few weeks... which we feared might be an indication that the cancer was gaining the upper hand. Based on this cursory MRI report, however, the slowdown may be more a result of the second anti-seizure medication that was added to his regime a few weeks ago... Stay tuned - we've rescheduled his UCSF appointment for this coming Tuesday and should have further results to report.
On a personal note, thanks for the emails of concern regarding yesterday's meltdown. I'm personally going through several levels of deep stress in my personal life at the moment - and the addition of the big void ahead in Chester's care simply worked my last nerve. But enough of that - this blog is about the Cheeky One and will return to that focus exclusively.
You're all up to speed now on the situation as it stands, and we'll keep you informed of the next developments - whatever they may be. In the meantime, if you know of anyone who would be willing to step up as his companion beginning in August, please give a shout - otherwise it will be time to place him in a facility that can do for him what so many of you have already done.

Turmoil of a Different Kind

2006-06-23T11:52:00.000-07:00

Well, ladies and gents, it's Jaime here (I couldn't get into the site to post under my own name).
I know it's been very quiet here and there are many reasons for it... First and foremost is the turmoil going on in my own life and the lack of someone else to consistently help with Chester's care. So, we are at a crossroads and trying to figure out how best to deal with the situation.
WE NEED HELP in caring for Chester, but are getting no responses. I am at the end of my own rope in what I'm able to do for him, and am about to go "nose down" from the effort - which will do none of us any good. I will be meeting with the Cancer Center's Social Worker to investigate other resources for finding him a companion - perhaps there is an outfit that can provide that under his Social Security Disability? If we can't do that, perhaps there will be a "full-care" facility that he can live at which will provide him with the peace of mind of having someone who can help with the little things of daily living as well as moments of distress or emergency. If neither of these is a possibility, the only other option we can think of at this moment is for Cheeky to return home to Missouri where his family can "tag team" one another as his caregivers.
These are very painful words for me to write, as I'm having to admit my own weakness and flagging endurance. But it has been over a year since this journey began with Chester and, as much as I thought I could bear up under the stress, I was wrong and am beginning to feel serious emotional strain and physical depletion.
So... where do we go? Who can we turn to? What is the next development here? I wish I could say, but the answers are not coming.
Any ideas (or cavalry troops) would be greatly appreciated.

Misunderstanding Conundrum

2006-06-12T19:55:00.000-07:00

I have come for suggestions regarding a consistent stumbling block of miscommunication.

I can not speak quickly. A perceived emergency gets me anxious. Anxiousness soon turns an uncontrollable cascade of neural firing. I hurry against this further exacerbating the process.

A common reaction is that the person who cares for me feels blamed. The blame itself cuts all directions. The vulnerability is both ways. Ships passing in the night at break neck speed.

There are several things that I have tried. Try to relax, and determine whether on not an emergency exist. Usually none exist, but I've already caught the panic. Once activated, blame of any stripe, and usually more than one exists simultaneously, must run it's course or be interupted.

Whether there are suggestions or not, I would like for people to be aware of this dynamic.

chester

Made it!

2006-06-11T10:12:00.000-07:00

I made it!

Alive.
Moving, slowly, yet moving, walking, ambulating they call it. Sashay I call it.

The wheelchair is another matter entirely! Part stealth vehicle, learning new moves weekly. I learned three new modes of propulsion in the last three weeks. Backward of course, slithering, and going directly across the 'demon drains' rather than avoiding them. This adds a booster, as well as more even ground.

Talking, a little slowly, articulation and grammar clear most understand me. As with most things, it is spotty. The 'problems' are staying apace of the progress, which are right problems to have! I do need to focus on the progress.

I'm looking forward to more postings in the near future!

chester

Gaining Momentum!

2006-06-01T11:02:00.000-07:00

Good News!
Chester saw his neurologist and neurosurgeon this week. Dr Lee, the former, upped his anti-seizure meds to help keep things under control, while Dr Tang, the latter, was very pleased with the state of his head wound and approved a new round of chemo!
In fact, Dr Tang commented that he thought Chester was doing better than at his last consult - that there has been no evident growth of the tumor nor any noticeable deterioration in his strength or articulation. In a phrase, our boy is "beating the odds" - it's been 13 months since the onset of his first symptoms and, with his upbeat response to the chemo and his health holding steady, we're all feeling more optimistic!
On the more mundane side of things, Momma Flo returned home last week and was replaced by sister Dawn. The new bathroom sink was finally installed as well - leaving his daily rituals a much more comfortable task (as well as giving him much more manuverability in the smallish bathroom). It's the little things like this that make life better!
In fact, Chester said yesterday on the way home that he's ready to start posting his own updates to this blog occasionally - so we can all look forward to hearing the latest developments "directly from the source!"
Stay tuned!

Setbacks and Forwards

2006-05-19T18:58:00.000-07:00

Chester had a bit of a setback this past Monday evening. He was on the toilet when he experienced a seizure of about 5 minutes duration. Fortunately, because of the grab bar next to the commode, he was able to hook his arm around it to keep him from falling. Ironically, his steely grip on it was so tight that when it came time to get him upright (or on the floor, I'm not sure which as I wasn't there), he couldn't let go! Momma Flo ultimately called 911 and our boy was ambulanced to Alta Bates where they stablized and released him.
Flo, Chester and I met with his new Oncologist, Dr. Chakarvarthi, at noon Tuesday. It was basically a "get-to-know-you" for her, as she is taking over from Dr. Hartman. We all liked her very much - she's very genial, very matter-of-fact. We brought her up to date - about waiting to do more chemo until the head wound was no longer showing signs of infection - and she recommended we see Dr. Tang, his neurosurgeon, to get the okay. (We'll see him on the 31st and are hopeful that he won't still want to remove the bone flap since the scar is no longer weeping with any regularity and has returned to it's normal, healthy pink color. Hold that thought!)
We then had a quick bite of lunch at the - surprise! - new sushi restaurant next door to Dr. Fitzer, CM's GP, who we wanted to update re: the seizure and the slightly higher dose of his anti-seizure med, Keppra. I've gotta give Momma points - she is, like her son, every bit the adventurer! Having twice dined with her for sushi - the first time being her first time ever- I relished the similarity with her son for being willing to try just about anything with unabashed enthusiasm and humor. She's taken to figuring out her favorites and is also determined to master the use of chop sticks! It's fascinating to see "nature and nurture" in action - these two livewires being such reflections of the other in so many ways.
Flo and Chester also had quite a fine time making fun of themselves during the drama of the previous night. Episodes that end benignly can often become the comic relief afterward and these two were certainly delightful examples of that. Both were particularly tickled by her inability to pull him off the bar and his inability to let go!
Dr. Fitzer was not particularly alarmed by the seizure episode, since the Keppra has been so successful at the low dosage he's taking. Chester also remained conscious through the episode which, while perhaps more alarming for him, is certainly much less so for whoever he's with! (When he was first informed by Dr. Lee that he had brain cancer and seized completely in the office - I swear I thought he'd died in front of my eyes: he was gone but his eyes were wide open! I can still feel the sickening shiver of panic that hit...)
At any rate, all is back to relative normal on this end. Flo will be flying home on Tuesday, which is when Jon Weaver arrives to stay until the 28th. Then sister Dawn will be incoming for her nearly three-week stint. In the meantime, here's to a sweet and quiet weekend!

Ch-ch-changes

2006-05-15T22:12:00.000-07:00

Hey everyone - Jaime here.
Just a brief note to let you know that Chester will be seeing a new Oncologist tomorrow at Alta Bates; Dr Hartman (of the Carrie Bradshaw killer shoes) is transferring to the SF Peninsula. I've not met her, but Chester has evidently already met (the new) Dr C. and likes her. Now that he's feeling better (blood pressure-related dizziness under control and head wound doing nicely), we need to find out if he's well enough to do another round of chemo. He'll need clearance to do this, however - so stay tuned.
It's been a real pleasure having Florence here to take care of her boy. I daresay both are thriving in the other's presence, ever more deeply appreciating one another for who they truly are underneath the patina of mother and son. The love and laughter are thick and sweet - and it's tragic that it often takes something of this magnitude to bring us to these depths of intimacy. Sad - how we too easily short-change ourselves from such rich interaction with everyone we love...
At any rate - back to the mundane... With any luck, CM's new sink and faucet will have been successfully installed, easing his bathing rituals (working faucets with only one hand while twisting from the waist is not particularly conducive to "ease, elegance or efficiency!" ) - with special thanks to Frank, the Bakery Lofts' Property Manager. He's made the adaptation of the space to Chester's needs a breeze! (The Cheeky One is constantly assisted by unexpected angels, lemme tell ya! We should all be so lucky!)
Okay... more to come sooner than later! xox Jaime

Tightrope Pt. 3E; sensory integration

2006-05-11T12:42:00.000-07:00

Many of his perceptions are now more sensitive than they used to be -- which means that his internal alarms are being tripped more often -- which means that he is in a state of arousal more often, poised unconsciously for fight or flight. I wouldn't be surprised if this were related to his blood pressure issues, & I am strongly convinced that this has something to do with the "labile" state attributed to brain surgery patients. Naturally you are going to be more "labile" if your brain is sending you constant little alarms about sensory input that is outside your new comfort zone. (The good news is that this is likely to moderate in time, as his brain adapts to the changes -- especially since he is dealing with it consciously.)

A young man of my acquaintance had what seemed to be a filthy temper. He seriously "over-reacted" to simple problems. However, it was determined that he had serious visual processing problems. After a course of vision therapy, he suddenly became a very mellow person. His "over-reaction" was to a problem that no observer could see. He was constantly tripping over things -- because they weren't exactly where he thought they were. He was constantly spilling things -- because the glass was not quite where he thought it was. Every moment of every day, simple things were going awry on him, for no reason he could understand. The constant frustration was responsible for his "filthy temper." People who thought he was "over-reacting" had no idea what he was reacting TO, & therefore, had no idea that his reaction was more appropriate than they realized. (From his point of view, inanimate objects were leaping into his path to trip him -- constantly. Nobody would like that. It would make anybody grumpy!)

I do not raise these issues to make you worry about your behavior. Most of the time, Chester has to sort this out in his own brain. I raise these issues because our being more conscious can occasionally be helpful to him. And in order to be more conscious, you have to understand what is going on, & ponder it a bit.

I have talked to parents of kids with ADHD -- many of whom are totally unaware of the sensory processing issues associated with ADHD. They will put the kid's t-shirt on in the morning, & he will complain about the scratchy label at the back of the neck. They will tell him not to be a sissy. He will complain that he doesn't want to wear THOSE shoes, & the parent will feel around inside & determine that nothing is out of the ordinary -- & put the shoes on him anyway. They send him to a classroom where his hyper-alert nose is assaulted by chemical cleaners, & his hyper-alert ears are bombarded by the noises of lots of people -- while his shoes irritate his feet & the label in the back of his t-shirt chews away at the back of his neck. And then they wonder why he is not paying attention when the teacher is talking about math. Well, he is already paying attention to too many other things -- things for which his brain is DEMANDING attention. He can't help it. (So I spend some time trying to convince parents that they should help as much as they can. A hard sell, when you can't see the problem. Would it kill you to cut the damned label out of the back of his t-shirt?)

Chester's sensory processing has been disrupted in a different way, & we have no way of knowing what he is perceiving. It is not really our job to figure it out, & he wouldn't expect or want us to. (He especially wouldn't want us all worrying about it all the time! There is no way you can be responsible for what he is sensing, & if HE is having trouble figuring it out, there is no way that you can! So don't obsess about it.) However, our consciousness might enable us to help him from time to time.

For example, I would never thrust a bottle of perfume under his nose, & ask him what he thinks of it; his olfactory sense is VERY sensitive these days. He doesn't need a strong whiff of anything. (He can probably smell it if you stand outside the door of his apartment!)

The women in my family have an annoying tendency to shove food at people, & expect them to eat it piping hot & in inappropriate quantities. My mother would flip out & get absurdly over-emotional if Chester sat around waiting for her meal to cool -- as though he were personally rejecting her. It is really easy to make unconscious value judgments about people who are experiencing a different sensory reality than you. (I have seen parents describe children as "too picky" as being "difficult" as being "a sissy." People can get way too emotionally involved in projecting meaning onto a situation.) If you cook Chester a hot meal & he doesn't eat it right away, he is just waiting for it to cool down into his comfort zone. It is not a big deal. Relax. Don't fuss & fret over it & try to figure out what it means -- don't leap up & offer to cook him a different meal. He is not dissing you or the food. (He will probably tell you this, but if he doesn't think of it, I am hoping that my saying it will help you to be more comfortable with it.)

If you take Chester somewhere where there are a lot of people, colors, noises, odors -- he is going to tire more quickly than he used to. And he may want some quiet time afterwards to calm his nervous system. I imagine this is one of the functions of the naps he takes -- quiet time in a familiar & comfortable space helps an overworked nervous system to calm down. In general, he can't filter out as much stimulus as he used to, & probably not as much as you can. Again, it is not a huge big deal -- I am not advocating that you get all freaked out about it & hover over him trying to fix it. (Hovering over him just becomes more stimulus to filter out!) But if he tells you he is tired, or that he needs a bit of quiet, I thought it might help to know what that is about. It doesn't mean that he is mad at somebody or not enjoying himself or any of those things that people worry about. It just means that he needs to reduce the incoming stimuli.

Fortunately, he is uncommonly self-aware, & he will most likely figure out what he needs on his own, & tell you about it. But your awareness can simplify that for him, in a few situations. I can't stress enough that I am not suggesting that you hover over him, asking if things are bothering him. Having somebody hover over you in a state of hyper-alertness could easily become another stressor. (If they rush you to the front of the line in the emergency room, that means that you are in deep doo-doo! Hyper-alertness in people around you is another thing that can trigger the state of arousal, since it is another danger signal.) I am advocating a state of relaxed awareness -- & not just for Chester. (I really do have a bee in my bonnet about this!)

We tend to interpret the behaviors of others through a filter of our own perceptions. (What other way do we have to do it?) It can help us in a lot of areas of life, if we can be aware that the other people are filtering their perceptions through radically different sensory apparatus.

This is one of the tight-ropes that Chester is now walking. His nervous system is trying to find a new equilibrium. The fundamental balance of his nervous system has been changed. It's not just about his sense of smell being more acute -- it is about a major reorganization in sensory processing...

Tightrope Pt. 3D; sensory integration

2006-05-11T12:41:00.000-07:00

His tastes in food have changed. There is no way to sort out which sorts of cravings are responses to deficiencies in the body, & which are driven by changes in sensory processing, but sensory processing is certainly part of the equation.

His tolerance for hot & cold foods is reduced -- he often microwaves cold drinks for a few seconds to make them less cold, or lets hot food cool a bit before he eats it. (This is a change in his parameters for what is comfortable.)

Things like finding your balance to stand upright are also affected by your sensory system. Chester has complained of odd sensations in the right side of his body -- his right arm & leg are still sending him sensory information, but it is much changed from what it used to be. His balance is impaired by the physical inability of the right side of his body to adjust his posture, but also by the disruption of his previous sense of proprioception -- his sense of where his body is in space has been disrupted. (He occasionally loses track of his right hand.)

All of this means that life in general is harder work for him than it used to be. He may get tired more easily than he used to -- especially in highly stimulating situations where there are a lot of people, a lot of noises, etc. He has to work harder to filter out the unimportant stimuli. This work is invisible to other people present -- he is not always conscious of it himself.

It also means that he has to bring more of his sensory processing to consciousness, instead of letting it be handled unconsciously. An odor, for example, may bother him until he tracks it down, verifies what it is, & assures his brain that it is "not a problem." (Smells, after all, can be an important indicator of whether the meat is safe to eat, or whether the house is on fire, among other things. Any odor outside the brain's comfort zone could be an important warning. If you are conscious of more odors, you have to check for more potential dangers.)

Tightrope Pt. 3C; sensory integration

2006-05-11T12:39:00.000-07:00

Say you are eating a nice, juicy hamburger. You may be enjoying the burger, but you are also attending to your spouse & instructing your children on proper restaurant behavior, perhaps, or admiring a nearby sex object, or thinking about a problem at work. Suddenly you bite down on a piece of bone. Suddenly, when your teeth connect with that bit of bone, the hamburger gets your undivided attention. Your brain instantly informs you that there is something very wrong with your hamburger. Perhaps you spit out the mouthful of food immediately, reflexively (impolitely, but hey, we are talking survival here!) This is a variation on the "flight" response -- getting away from the stimulus that falls outside your parameters for safety. Or perhaps you go to the cash register to raise hell -- a form of "fight" response. Perhaps you attempt to unobtrosively remove the bit of bone, verify that it is nothing more alarming, & stoicly continue to eat. (Our conscious mind & social conditioning inform our responses to sensory information.) But one way or another, your sensory apparatus trips an alarm, & you respond to it.

The brain has an AMAZING capacity to adapt. Back in the Dark Ages, when I was in college, Psychology classes used to study experiments in which subjects were fitted with glasses that inverted everything in the visual field. At first, the students were disoriented & could hardly function. But at some point, the brain figured out that it could flip the imates upright. After having the students go around like this for some time, the nasty researchers then took away the glasses -- & the students got disoriented all over again, & had to wait for their brain to flip the images back to normal. (And, in fact, this is part of the flexibility I was talking about. When conditions change, the brain adapts as a matter of survival. The brain determinedly struggles to wrestle meaning from the constant, overwhelming flow of data. And fortunately for us, the brain is pretty darned good at doing that.)

Now, Chester's brain has been through rather a lot in the past year or so. First the tumor came along & started disrupting the normal neurological patterns in his brain. And then the surgeon came along & caused even more changes. (While I don't know a lot about such things, it is quite possible that the scar tissue caused yet more changes, & I don't even want to speculate on what the chemo & radiation might have done. That is WAY too far outside my experience.) This has all, quite understandably, produced changes in the way he processes sensory information.

For example, he was going through a box of things from his previous apartment, & discovered that he can no longer tolerate the shampoo that he used to use. Its scent bothers him. He says that his sense of smell has become doglike in its intensity. For the most part, he seems to be comfortable with natural odors like sweat, although he has trouble with garbage smells, & asks his companion to take the trash out every night. He is having more trouble with chemical odors (so Dawn rewashed her clothes when she arrived, to remove the smell of the soap or fabric softener that was bothering him.) If you are going to visit him & are thinking about spritzing on a little something to improve your smell, he might prefer to smell your sweat. (His reactions to some odors may border on a mild allergic reaction. Allergies & sensory processing issues tend to run in the same families, & are related in some strange way I haven't figured out. When my son had a course of neurodevelopmental movement therapy to address his sensory processing issues, his food allergies/sensitivities also disappeared -- which his therapist claims is not uncommon... Nearly every book I read on ADD/autism made reference to allergies, & a naturopath I consulted described autism & allergy as different kinds of inflammation in the body... There is a relationship, even though I cannot yet adequately explain it.)

Tightrope Pt. 3B; sensory integration

2006-05-11T12:37:00.000-07:00

There is so much sensory data coming in that we would totally lose our minds if our brains did not have a way to filter & prioritize it all. And indeed, many behavioral problems have their roots in a person's inability to filter sensory data appropriately. (See -- even I can get judgmental about it. But darn it, being different CAN be a problem in some situations!)

One of the thing that makes this filtering so difficult is that it must be flexible, to adapt to changing situations. If you are hiking through the jungle, & an ant starts crawling up your leg, it is a good thing to know about. (Some of those jungle ants can be quite nasty!) So your brain would appropriately register that tickle as something to check out.

However, if a tiger suddenly appears out of the bushes, that is no time to be worrying about the ant! Your life depends on focussing on the tiger. (And indeed, if you stop to brush the ant away, that movement will only attract the tiger! People with severe sensory processing issues cannot ignore the ant to deal with the tiger -- not good, no matter how non-judgmental you are trying to be!)

One of the things the brain does to help us filter the incoming sensory data is to set parameters for "safety" or "comfort." It ignores stimuli that fall within those safe/comfortable parameters when they are not of primary concern, & blares an alarm -- triggering the famous fight or flight response of song & story -- if the parameters are exceeded.

Tightrope Pt. 3A; sensory integration

2006-05-11T12:35:00.000-07:00

You know your blog post is too long when it breaks the pipe...

I have been hesitating to post this, as I fear it will be too long & too boring. I have rather a bee in my bonnet on the subject of sensory integration, since several members of my family have problems in the ADD/autistic spectrum, & sensory integration issues are a big part of that equation. Actually, folks on the ADD/autistic spectrum & others with various learning disabilities are often labeled with "Sensory Integration Dysfunction." (Doctors who work in this area are so judgmental about what is "normal" & what is not! Being different is not always a bad thing. Poor Superman -- did you hear? He can see through WALLS! Isn't it awful?)

Anyway, it was clear to me during my visit that Chester has experienced some significant changes in sensory processing, & I wanted to share with you a bit of what I have learned about sensory processing over the years. (It really is germaine, if you can stand it.)

First of all, most of us are blissfully unaware of our own sensory processing. It is handled unconsciously much of the time. This is both the good news & the bad news -- because when you start to have problems with it, or experience changes in it, it is hard to figure out what the hell is going on.

We all have at least 5 senses (I won't argue about any others that may or may not exist), which are bombarding us CONSTANTLY with data about everything around us & inside us. Every single hair on your body is connected to a nerve that can register a touch or a tickle -- every bit of your skin is monitored by sensory nerves -- internal organs like the bowels & bladder are keeping you updated on their function. Your ears are constantly bombarded with noises, near & far, soft & loud, important & unimportant. Within your field of vision are more objects than you can really deal with at any given time. Everything around you is exhuding an odor, whether you are conscious of it or not. Everything you put in your mouth tickles a variety of taste-buds. We even have a nifty little ability called proprioception, which is our ability to monitor our body's position in space using feedback from the muscles, tendons, etc. (You can close your eyes, & still have a pretty good idea what your hands are doing -- because the nerves in the hands are constantly reporting to your brain. And when you tiptoe through your darkened bedroom -- proprioception is busy guiding you.)

Feelin' Good!

2006-05-09T23:40:00.000-07:00

Howdy everyone, Jaime here.
Sorry it's been so quiet, but much change and "life in high gear" has been going on with those of us immediately around Chester. I haven't seen much of CM in recent weeks, but with Chrys gone and Mom pitching in to stay with him, I've gotten to see him two days in a row. (He & I are orchestrating the installation of a new bathroom sink - one he can roll up to and under instead of having to twist from the waist. One of the unexpected perks is that we can also install a high-necked faucet with only one handle, making it - we hope - even more convenient.)
Chester's feeling quite good now that the new hypertension medicine has curtailed his dizziness and lowered his pressure to normal levels (118-ish/76-ish). The diuretic is keeping the swelling down nicely in his right ankle. His articulation both days was "for shit" (his words, not mine), but that hasn't stopped him from communicating. If anything, he's more animated than ever - and his Mom knows just when to egg him on or call his bluff! (Florence also treated us to 2 types of deep-fried mushrooms this afternoon - mmmm... tasty!)
I'll be bringing the blog up to speed soon on CM's financial picture once all the details of his SSI, Medi-Cal, etc get worked out. At the moment he's got several thousand owing in deductibles for this new year, so we might need your help with that... And, even more importantly, now that Chrys is back to her life, Chester is also in need of companions! I'll get the particular dates and post them asap - but you needn't wait for me/us! If you can spare some time for the boy, please PLEASE GET IN TOUCH! Thanks! xox Jaime

Happy Beltane!

2006-05-01T22:25:00.000-07:00

All is well as we welcome spring. Chester, Barbara and I did an improvised May Pole dance yesterday, all on wheels. Chester danced in his wheelchair, I scooted around on a massage stool and Barbara wove through us with a rickety shopping cart. She documented the whole thing and hopefully we'll have more for you from her once she gets home in New York.

Chester is feeling much better after the change in his medication. His dizziness is almost totally gone, so his walking and transferring are both much stronger. He now walks with confidence and grace, most of the time. Our work now will be spending more and more time out of the wheelchair- walking and standing more in the apartment and out in the community. As we do so, we will be guided by Prudence, who has been a good ally this past year.

Medi-Cal finally is active, so we are now through the entire process of getting Chester on Social Security Disability and Medi-Cal. Today when we went for blood tests we were able to give them the Medi-Cal card, which felt like a major victory! Now we can turn our attention to submitting receipts for medical expenses dated back as far as November and hope that many of them are reimbursed. With all of his medical expenses totalling in the several-hundred-thousand-dollar range, it is nice to know that from this point forward many of his medical expenses will be paid for by our dear government agencies. Of course, his disability income is laughably low, and Chester will continue to rely on the support of his community for subsistence and sushi.

May all of your May Day seeds flourish this spring. What ever it is you are sprouting, rooting, or pruning, may it be fed by the rich soil of friendship and the generous waters of love.

Blood Pressure Down, Bladder Pressure Up!

2006-04-27T20:39:00.000-07:00

Yesterday we had an appointment with Chester's general practicioner to check in on his blood pressure medications. He had been taking Lotrel at two different doses for the past month or so, and has experienced a lot of dizziness and fatigue. His blood pressure readings didn't go down very much either. So we went in for a change of medications, hoping another class or combination of hypertension drugs would work better. Fitzer gave him a higher dose of the ACE inhibitor medication and eliminated the calcium channel drug. He also gave Chester a diuretic to help flush out the excess fluid that is causing the swelling in Chester's leg and hand.

Today, Chester started both new drugs and so far, so good. He was only a little bit dizzy this morning, such a relief after being consistently dizzy for over a month. His blood pressure readings were good- we got several low readings, even after doing a half hour walk. And without the dizziness, we were able to do several periods of walking and hand stretching, in addition to a Home Depot excursion with Jaime. And as his blood pressure dropped, his bladder pressure was elevated, the "piss pill" doing its job.

So a day of relief. It was great to feel that the new medications were working without any huge side effects. We'll see over the next few days how they work over time.

As June approaches, Chester and I are doing the work together of phasing me out of full time companion care. Mostly, we are just having long conversations about the nature of companion work, what kind of help he needs, what he can do on his own, the role of support from family and friends. We will be articulating and asking for more specific kinds of assistance in the coming weeks- so stay tuned for ways that you can help out. His Mom will be in town for 10 days starting next week, and then his sister will be coming to stay with him for the first stretch of the summer. If you would like to do primary companion care for Chester this summer, be in touch so we can schedule your visit.

We are off to shower and get ready for bed. Take care, all.

Companionship

2006-04-20T22:20:00.000-07:00

Chester spent a lovely and quiet day in the companionship of Gil, while I worked for a half day and then went househunting. Gil prepared a duck dinner which was reported to be excellent.

I am still looking for someone to stay with Chester this weekend- Friday, Saturday and into Sunday. If you are available for ABBA mornings and sushi evenings this weekend, please let us know- email Chester directly at dragonfly@surfbest.net

Thanks folks,

Chrys

Tightrope Pt. 3; sensory integration

2006-04-19T22:46:00.000-07:00

I have been hesitating to post this, as I fear it will be too long & too boring. I have rather a bee in my bonnet on the subject of sensory integration, since several members of my family have problems in the ADD/autistic spectrum, & sensory integration issues are a big part of that equation. Actually, folks on the ADD/autistic spectrum & others with various learning disabilities are often labeled with "Sensory Integration Dysfunction." (Doctors who work in this area are so judgmental about what is "normal" & what is not! Being different is not always a bad thing. Poor Superman -- did you hear? He can see through WALLS! Isn't it awful?)

Anyway, it was clear to me during my visit that Chester has experienced some significant changes in sensory processing, & I wanted to share with you a bit of what I have learned about sensory processing over the years. (It really is germaine, if you can stand it.)

First of all, most of us are blissfully unaware of our own sensory processing. It is handled unconsciously much of the time. This is both the good news & the bad news -- because when you start to have problems with it, or experience changes in it, it is hard to figure out what the hell is going on.

We all have at least 5 senses (I won't argue about any others that may or may not exist), which are bombarding us CONSTANTLY with data about everything around us & inside us. Every single hair on your body is connected to a nerve that can register a touch or a tickle -- every bit of your skin is monitored by sensory nerves -- internal organs like the bowels & bladder are keeping you updated on their function. Your ears are constantly bombarded with noises, near & far, soft & loud, important & unimportant. Within your field of vision are more objects than you can really deal with at any given time. Everything around you is exhuding an odor, whether you are conscious of it or not. Everything you put in your mouth tickles a variety of taste-buds. We even have a nifty little ability called proprioception, which is our ability to monitor our body's position in space using feedback from the muscles, tendons, etc. (You can close your eyes, & still have a pretty good idea what your hands are doing -- because the nerves in the hands are constantly reporting to your brain. And when you tiptoe through your darkened bedroom -- proprioception is busy guiding you.)

There is so much sensory data coming in that we would totally lose our minds if our brains did not have a way to filter & prioritize it all. And indeed, many behavioral problems have their roots in a person's inability to filter sensory data appropriately. (See -- even I can get judgmental about it. But darn it, being different CAN be a problem in some situations!)

One of the thing that makes this filtering so difficult is that it must be flexible, to adapt to changing situations. If you are hiking through the jungle, & an ant starts crawling up your leg, it is a good thing to know about. (Some of those jungle ants can be quite nasty!) So your brain would appropriately register that tickle as something to check out.

However, if a tiger suddenly appears out of the bushes, that is no time to be worrying about the ant! Your life depends on focussing on the tiger. (And indeed, if you stop to brush the ant away, that movement will only attract the tiger! People with severe sensory processing issues cannot ignore the ant to deal with the tiger -- not good, no matter how non-judgmental you are trying to be!)

One of the things the brain does to help us filter the incoming sensory data is to set parameters for "safety" or "comfort." It ignores stimuli that fall within those safe/comfortable parameters when they are not of primary concern, & blares an alarm -- triggering the famous fight or flight response of song & story -- if the parameters are exceeded.

Say you are eating a nice, juicy hamburger. You may be enjoying the burger, but you are also attending to your spouse & instructing your children on proper restaurant behavior, perhaps, or admiring a nearby sex object, or thinking about a problem at work. Suddenly you bite down on a piece of bone. Suddenly, when your teeth connect with that bit of bone, the hamburger gets your undivided attention. Your brain instantly informs you that there is something very wrong with your hamburger. Perhaps you spit out the mouthful of food immediately, reflexively (impolitely, but hey, we are talking survival here!) This is a variation on the "flight" response -- getting away from the stimulus that falls outside your parameters for safety. Or perhaps you go to the cash register to raise hell -- a form of "fight" response. Perhaps you attempt to unobtrosively remove the bit of bone, verify that it is nothing more alarming, & stoicly continue to eat. (Our conscious mind & social conditioning inform our responses to sensory information.) But one way or another, your sensory apparatus trips an alarm, & you respond to it.

The brain has an AMAZING capacity to adapt. Back in the Dark Ages, when I was in college, Psychology classes used to study experiments in which subjects were fitted with glasses that inverted everything in the visual field. At first, the students were disoriented & could hardly function. But at some point, the brain figured out that it could flip the imates upright. After having the students go around like this for some time, the nasty researchers then took away the glasses -- & the students got disoriented all over again, & had to wait for their brain to flip the images back to normal. (And, in fact, this is part of the flexibility I was talking about. When conditions change, the brain adapts as a matter of survival. The brain determinedly struggles to wrestle meaning from the constant, overwhelming flow of data. And fortunately for us, the brain is pretty darned good at doing that.)

Now, Chester's brain has been through rather a lot in the past year or so. First the tumor came along & started disrupting the normal neurological patterns in his brain. And then the surgeon came along & caused even more changes. (While I don't know a lot about such things, it is quite possible that the scar tissue caused yet more changes, & I don't even want to speculate on what the chemo & radiation might have done. That is WAY too far outside my experience.) This has all, quite understandably, produced changes in the way he processes sensory information.

For example, he was going through a box of things from his previous apartment, & discovered that he can no longer tolerate the shampoo that he used to use. Its scent bothers him. He says that his sense of smell has become doglike in its intensity. For the most part, he seems to be comfortable with natural odors like sweat, although he has trouble with garbage smells, & asks his companion to take the trash out every night. He is having more trouble with chemical odors (so Dawn rewashed her clothes when she arrived, to remove the smell of the soap or fabric softener that was bothering him.) If you are going to visit him & are thinking about spritzing on a little something to improve your smell, he might prefer to smell your sweat. (His reactions to some odors may border on a mild allergic reaction. Allergies & sensory processing issues tend to run in the same families, & are related in some strange way I haven't figured out. When my son had a course of neurodevelopmental movement therapy to address his sensory processing issues, his food allergies/sensitivities also disappeared -- which his therapist claims is not uncommon... Nearly every book I read on ADD/autism made reference to allergies, & a naturopath I consulted described autism & allergy as different kinds of inflammation in the body... There is a relationship, even though I cannot yet adequately explain it.)

His tastes in food have changed. There is no way to sort out which sorts of cravings are responses to deficiencies in the body, & which are driven by changes in sensory processing, but sensory processing is certainly part of the equation.

His tolerance for hot & cold foods is reduced -- he often microwaves cold drinks for a few seconds to make them less cold, or lets hot food cool a bit before he eats it. (This is a change in his parameters for what is comfortable.)

Things like finding your balance to stand upright are also affected by your sensory system. Chester has complained of odd sensations in the right side of his body -- his right arm & leg are still sending him sensory information, but it is much changed from what it used to be. His balance is impaired by the physical inability of the right side of his body to adjust his posture, but also by the disruption of his previous sense of proprioception -- his sense of where his body is in space has been disrupted. (He occasionally loses track of his right hand.)

All of this means that life in general is harder work for him than it used to be. He may get tired more easily than he used to -- especially in highly stimulating situations where there are a lot of people, a lot of noises, etc. He has to work harder to filter out the unimportant stimuli. This work is invisible to other people present -- he is not always conscious of it himself.

It also means that he has to bring more of his sensory processing to consciousness, instead of letting it be handled unconsciously. An odor, for example, may bother him until he tracks it down, verifies what it is, & assures his brain that it is "not a problem." (Smells, after all, can be an important indicator of whether the meat is safe to eat, or whether the house is on fire, among other things. Any odor outside the brain's comfort zone could be an important warning. If you are conscious of more odors, you have to check for more potential dangers.)

Many of his perceptions are now more sensitive than they used to be -- which means that his internal alarms are being tripped more often -- which means that he is in a state of arousal more often, poised unconsciously for fight or flight. I wouldn't be surprised if this were related to his blood pressure issues, & I am strongly convinced that this has something to do with the "labile" state attributed to brain surgery patients. Naturally you are going to be more "labile" if your brain is sending you constant little alarms about sensory input that is outside your new comfort zone. (The good news is that this is likely to moderate in time, as his brain adapts to the changes -- especially since he is dealing with it consciously.)

A young man of my acquaintance had what seemed to be a filthy temper. He seriously "over-reacted" to simple problems. However, it was determined that he had serious visual processing problems. After a course of vision therapy, he suddenly became a very mellow person. His "over-reaction" was to a problem that no observer could see. He was constantly tripping over things -- because they weren't exactly where he thought they were. He was constantly spilling things -- because the glass was not quite where he thought it was. Every moment of every day, simple things were going awry on him, for no reason he could understand. The constant frustration was responsible for his "filthy temper." People who thought he was "over-reacting" had no idea what he was reacting TO, & therefore, had no idea that his reaction was more appropriate than they realized. (From his point of view, inanimate objects were leaping into his path to trip him -- constantly. Nobody would like that. It would make anybody grumpy!)

I do not raise these issues to make you worry about your behavior. Most of the time, Chester has to sort this out in his own brain. I raise these issues because our being more conscious can occasionally be helpful to him. And in order to be more conscious, you have to understand what is going on, & ponder it a bit.

I have talked to parents of kids with ADHD -- many of whom are totally unaware of the sensory processing issues associated with ADHD. They will put the kid's t-shirt on in the morning, & he will complain about the scratchy label at the back of the neck. They will tell him not to be a sissy. He will complain that he doesn't want to wear THOSE shoes, & the parent will feel around inside & determine that nothing is out of the ordinary -- & put the shoes on him anyway. They send him to a classroom where his hyper-alert nose is assaulted by chemical cleaners, & his hyper-alert ears are bombarded by the noises of lots of people -- while his shoes irritate his feet & the label in the back of his t-shirt chews away at the back of his neck. And then they wonder why he is not paying attention when the teacher is talking about math. Well, he is already paying attention to too many other things -- things for which his brain is DEMANDING attention. He can't help it. (So I spend some time trying to convince parents that they should help as much as they can. A hard sell, when you can't see the problem. Would it kill you to cut the damned label out of the back of his t-shirt?)

Chester's sensory processing has been disrupted in a different way, & we have no way of knowing what he is perceiving. It is not really our job to figure it out, & he wouldn't expect or want us to. (He especially wouldn't want us all worrying about it all the time! There is no way you can be responsible for what he is sensing, & if HE is having trouble figuring it out, there is no way that you can! So don't obsess about it.) However, our consciousness might enable us to help him from time to time.

For example, I would never thrust a bottle of perfume under his nose, & ask him what he thinks of it; his olfactory sense is VERY sensitive these days. He doesn't need a strong whiff of anything. (He can probably smell it if you stand outside the door of his apartment!)

The women in my family have an annoying tendency to shove food at people, & expect them to eat it piping hot & in inappropriate quantities. My mother would flip out & get absurdly over-emotional if Chester sat around waiting for her meal to cool -- as though he were personally rejecting her. It is really easy to make unconscious value judgments about people who are experiencing a different sensory reality than you. (I have seen parents describe children as "too picky" as being "difficult" as being "a sissy." People can get way too emotionally involved in projecting meaning onto a situation.) If you cook Chester a hot meal & he doesn't eat it right away, he is just waiting for it to cool down into his comfort zone. It is not a big deal. Relax. Don't fuss & fret over it & try to figure out what it means -- don't leap up & offer to cook him a different meal. He is not dissing you or the food. (He will probably tell you this, but if he doesn't think of it, I am hoping that my saying it will help you to be more comfortable with it.)

If you take Chester somewhere where there are a lot of people, colors, noises, odors -- he is going to tire more quickly than he used to. And he may want some quiet time afterwards to calm his nervous system. I imagine this is one of the functions of the naps he takes -- quiet time in a familiar & comfortable space helps an overworked nervous system to calm down. In general, he can't filter out as much stimulus as he used to, & probably not as much as you can. Again, it is not a huge big deal -- I am not advocating that you get all freaked out about it & hover over him trying to fix it. (Hovering over him just becomes more stimulus to filter out!) But if he tells you he is tired, or that he needs a bit of quiet, I thought it might help to know what that is about. It doesn't mean that he is mad at somebody or not enjoying himself or any of those things that people worry about. It just means that he needs to reduce the incoming stimuli.

Fortunately, he is uncommonly self-aware, & he will most likely figure out what he needs on his own, & tell you about it. But your awareness can simplify that for him, in a few situations. I can't stress enough that I am not suggesting that you hover over him, asking if things are bothering him. Having somebody hover over you in a state of hyper-alertness could easily become another stressor. (If they rush you to the front of the line in the emergency room, that means that you are in deep doo-doo! Hyper-alertness in people around you is another thing that can trigger the state of arousal, since it is another danger signal.) I am advocating a state of relaxed awareness -- & not just for Chester. (I really do have a bee in my bonnet about this!)

We tend to interpret the behaviors of others through a filter of our own perceptions. (What other way do we have to do it?) It can help us in a lot of areas of life, if we can be aware that the other people are filtering their perceptions through radically different sensory apparatus.

This is one of the tight-ropes that Chester is now walking. His nervous system is trying to find a new equilibrium. The fundamental balance of his nervous system has been changed. It's not just about his sense of smell being more acute -- it is about a major reorganization in sensory processing...

MRI Result

2006-04-17T19:58:00.000-07:00

Aloha All:

Chrys has asked me to review the new MRI result and react to it. I have to say, the radiologist who read this study does not know Chester and has no reason not to be pessimistic and every reason to be so -- and yet he cannot find ANYTHING to confirm the presenence of residual tumor. This closely corresponds to the fact that, despite worries about continued infection and potential tumor regrowth, our Chester has prospered. All of this confirms the idea that the enlargement of the area in question is related to treatment rather than to tumor growth. This is not a report that "hedges" its bet -- they can find NO evidence of residual tumor -- period.

So, that's my opinion as a "card carrying physician."

On the more "esoteric" side -- Chester's cards show him in the ascendent. He is grounded, focused and (perhaps contrary to what he, himself, believes) in his element. He has worried about "being hemiplegic." well, that stretches the truth somewhat, he is not technically hemiplegic, even though significantly impaired. I do not know why this has happened, but somehow it is bound up with (and I am going way out on a limb here) his own resistance to his own destiny. We all know that Chester has power -- except for, maybe, himself -- and power carries awesome responsibility.

All that aside, the new MRI findings are a cause for rejoicing.

Aloha nui,
Bill

The Latest Info

2006-04-17T14:43:00.000-07:00

Chester and I just returned from a big errand excursion, which included picking up the report from his latest MRI. From my (non-MD) reading, the results are very good news. The overall tumor site has shrunk in size from six weeks ago, no new abnormalities are found, and the results indicate that the edema and scar tissue are due to treatment and surgery, not new tumor growth. We will be getting more medical-professional readings of the report in the coming weeks, and will let you know if we hear anything more. Below is a copy of the report for anyone who wants to sift through the medical technical language.

We've had a very lovely offer from Chester's good friend who is a school teacher and is able to be a primary companion this summer. I am sure she would welcome help from others, so if you are able to spend stretches of time with Chester this summer, please be in touch.

I am also looking for an overnight companion for the following dates: this weekend, 4/21-4/23, and the first weekend in May, 5/5-5/8. In addition, I am in the process of moving to the east bay so will need time to pack. (now that we have Chester's move almost done, I get to start moving myself!). So companions, companions, companions- step up and pick a date! Chester's health is pretty stable right now, spirits are high, and there is much fun to be had around these parts. Come join in on the fun.

After I read Chester the MRI results, we talked about what it means to be a long-term survivor of this brain cancer. One of the core pieces of this reality is that he needs our help on many levels- the practical help of having a companion here with him, the financial help of surviving in the Bay Area unemployed (and with a ferocious appetite for sushi), and the spiritual and psychic support of knowing that he is held in community. I encourage each of you, dear friends, to consider in what ways you may be able to help Chester in the coming months (and years? ? ? ), supporting him as he beats the odds and keeps on living. I said back in August, when I heard the prognosis, that I was prepared for miracles. I would support him in dying if that is what happened, or I would be ready to be amazed and shocked at his survival. Well, the latter has turned out to be the case, and we are now officially on the miracle team. I am now ready to sit in awe as he continues to beat the odds and keep on gracing the world with his presence. How can we all, as a community, contribute to this miracle of living?

Happy Easter!

2006-04-16T16:12:00.000-07:00

Spirits were high this Easter around here. . .

. . . until Chester realized that the Easter Bunny didn't leave him any sushi in his basket!

One Year

2006-04-15T21:21:00.000-07:00

Today marks one full year since the first outward expression of Chester's brain tumor. On tax day last year, he had what he later learned to be his first seizure- a series of tics in his face. The facial tics persisted, and then his hand started going numb, and over the next three months it all spiraled away. By August, his right arm was almost totally paralyzed, his leg was starting to go with it, his speech was severely compromised, and he was having trouble breathing. This blog chronicles the story from then on.

One Year is a major victory for someone with Glioblastoma Multiforme. Without treatment, folks pass within months. Chester was dangerously close to this point when he underwent the massive resection last August. With treatment, the median survival is 3-12 months. So Chester is already in the miracle zone, and has been for quite some time. And not only is he living, he is ALIVE! He is able to walk and move with grace, is independent in most of his daily living, and is able to communicate to others. This past year, and especially the past eight months, have all been an amazing testament to his life-affirming, embodied spirit. He has chosen to live, and to live consciously. I am very grateful for all of the effort and commitment he has invested in surviving.

Wherever this next year takes him, he will be considered a long term survivor. He will have not only survived, but thrived. He has continued to teach, to stay connected to his dear friends, to stay in close contact with his family, and to live joyfully. May we all survive and thrive, allowing our bodies to guide us with wisdom and humor, allowing ourselves to be loved and supported by all of our intersecting communities.

Beautiful Beast

2006-04-14T21:47:00.000-07:00

More busy days here in Chesterville. Yesterday he got an MRI, and then we feasted on buffalo with friends. Our freezer is full of beautiful meats that Chester's brother Dan brought with him (he carried a big insulated bag full of frozen meat on the airplane from Missouri- venison, elk, buffalo, fish, and other delicious meats that he had hunted and processed himself- what a gift!)

Today Chester and I did his taxes, which was quite a shot in the dark. We had to wing it, and send them in with a nice note to the lovely people at the IRS saying, essentially, "i've got brain cancer, audit me if you dare!" But improvised or not, it was nice to have that done and not have to worry about it anymore.

We then spent the afternoon playing with plumbing, sorting through boxes, and visiting with a friend. A busy but relatively uneventful day- not too much to report.

As we were sorting through boxes, Chester found his "devil horn tiara", which he had put together from two pieces of 1930's rhinestone jewelry. When he put it on, I knew I had to capture the beauty for you all. And the photo also shows off all of Chester's hair, which is growing at an alarming rate. He is a furry beast, for sure. Just after this photo was taken, his visitor arrived, and Chester forgot he had the tiara on. He ended up spending the whole visiting, in deep and serious conversation, wearing the sparkly jewels on his crown.

Pain in the Ass

2006-04-12T16:49:00.000-07:00

Another rainy day with Chester. For those of you not in the Bay area, we've had a historic amount of rain over the past six weeks. As in, it has rained nearly every day for six weeks. The earth is saturated, the gutters are working overtime, mud slides and floods are afflicting the area, and spirits seem to be soggy around here. Rain doesn't usually bother me- in fact today Chester and I were talking about our mutual fondness of parading naked in the rain- but we are all a little tired of the incessant downpour.

Yesterday we braved the rain to make it to an appointment with Chester's general practicioner. We arrived at the office soaked and shivering, and left with a handful of prescriptions. Mostly refills of the drugs Chester is already taking, with the addition of a mouth wash for thrush and a hydrocortisone cream for Chester's sore butt. Chester has developed a very sore hemorrhoid, and it is even more sore because he has to sit on it so much in the wheelchair. We are taking care of it, but it is certainly a royal pain in the ass for the fussy old queen.

Today we also started the process of unpacking- now that all of Chester's belongings are down here, we get to start filling the shelves and making sense of all of it. Our first task is orienting all of the shelves, deciding where the crystals want to live and where the everyday items need to be to make Chester's day easy and efficient. Today's task was rebuilding a tall shelf, rearranging the shelves so that they would fit on the wall where we wanted it without bumping into the fuse box and other clunky things sticking out of the wall. The apartment feels more and more like home as we unpack and the dust settles.

I just got Chester settled on his third sitz bath of the night. He is really craving a nice warm bathtub immersion, but we haven't yet figured out a way to get him safely in and out of the tub. So at least his butt gets a warm soak in the basin that fits in the toilet. It seems to be quite a relief for him so far, and hopefully the hemorrhoid will relax very soon.

Tomorrow Chester gets another MRI. This is about six weeks since his last MRI that showed the half-centimeter growth of the primary tumor location. The information we get from the MRI tomorrow (results not till Monday) will help him make more decisions about further medical intervention or not. Meanwhile, his head wound has never looked so good- the wound site has sealed up completely, it hasn't been weeping at all for two weeks, and there is no redness or itching. All good signs- it is my hope that the respite from chemotherapy and the additional antibiotic may have helped any possible infection clear up and Chester can keep his head together. Still, there is the possibility of the bone flap removal, and we will keep you posted.

Important information and requests about companion care for Chester: First, I want to extend deep thanks to all those kind souls who have spent time with Chester as his primary companion. Those nights, weekends, and weeks of companionship have been most appreciated, and I trust that you all enjoyed your intimate time with Cheeky. On my part, I am committed to continue my time here with Chester until June 1. That will be nine months of being with Chester (with the breaks provided by all the other lovely folks who came and spent time!). I don't _want_ to withdrawal my full-time commitment, but I need to. I am needed to co-facilitate this summer's Sexological Bodywork training with Joseph Kramer, an eight week course beginning mid-June (the same class we were teaching with Chester last summer during his diagnosis). I need to have at least a week before class begins to come back into my own body and refocus my attention. So this means Chester is looking for summer companions- ideally, one or two very dedicated individuals who can take on my roles. He needs someone to live with him, assist him in keeping track of his schedule and medications, help him with daily tasks, and provide care and company. This is a major commitment, and I encourage those of you who are able to consider stepping up for this task. Who amongst this dear community can dedicate their summer to Chester's care? Who will set aside other commitments to focus their time and energy on being with our beloved friend? If anyone reading this gets inspired to be one of Chester's angels and spend their summer with him, please be in touch so we can begin communicating about it. I'll be posting again and again about this need until it is filled- so please, take some time to consider the possibility and see what emerges. It is a very vulnerable place for Chester- to need full time care, to rely on the generosity of friends to sustain him, to depend so much on the goodwill and dedication of his community. So far he has been graced with so much support and love, and I trust it will continue to flow. And, I assure you- while this role is huge and sometimes exhausting, it is by far the most rewarding and profound relationship I have ever invested myself in. To be with Chester as an ally and friend and assist him in daily survival is a very blessed opportunity, and I encourage you all to consider the joy and connection of the role in addition to the work and sacrifice it requires.

Chester just rolled out of the bathroom and we'll now begin the process of getting ready for bed. Till Soon, Dear Friends.

Tightrope, Part 2

2006-04-11T03:17:00.000-07:00

It is 3:15 a.m. I have had less than half a night's sleep, but if I am to have any hope of getting another quarter, I need to continue my interrupted blog entry. I will be up whenever Chester is up, ready or not, so while he is still snoring, I need to get back to sleep. (This is my official excuse for any typos that may follow. I am writing by the light of my laptop screen, & only half awake.)

I titled the first entry as I did, because Chester & I had been having some conversations about how he feels like he is walking a tightrope -- living in fear of falling off, or of falling astride the wire. (OUCH!)

One area where this is most clear is in regard to his medications & other medical treatments. The steroids he is taking have given him the "pie face" & Buddha belly that he is less than happy with, & contributed to the blood clots he had in his arm, & the slow healing of his wound. Every time they have tried to wean him off the steroids, he has suffered serious symptoms -- but staying on them has forced him to go on blood thinners, & may force him to have more surgery... He finds himself constantly weighing these sorts of trade-offs.

Another area where this arises in his relationship with the many people who help him. He is very appreciative of all the care that is being lavished on him by so many people. He has been told that many people in his condition wind up on the street, totally vulnerable -- a thought that brings tears to his eyes. He thanks people graciously for the smallest service (& frets if he forgets to.)

At the same time, he is struggling to maintain a sense of his own autonomy. A few days ago, he was loading the dish washer, & I asked if I could help him. He replied that he really enjoyed loading the dish washer, because it was something he could do to feel useful. I realized that I was struggling with my own need to feel useful as I watched him. Each of us felt the need to load the dishwasher, in order to feel good about himself. For the record, I eventually sought a different chore to help me feel good about myself. When does generosity become selfishness?

As I pondered this a bit, I related it to my own experience of parenting. On the one hand, the job of a parent is to protect the child, but on the other hand, the job also entails encouraging the child to stand on his own & move away from the parent. It's a variation of the old roots & wings idea. Parents who only "protect" their children rob them of independence/wings. People who push their children to take responsibility for themselves too soon, rob them of their security/roots.

Walking is difficult for Chester, so at times one is helping him by saving him steps. But walking also is very important to his body as it struggles to achieve a greater state of health. Walking is good for his circulation, for helping to reestablish neurological pathways, for helping to restore his literal balance.

It is not as though there is a single right way to achieve balance, once & for all. The balance changes from moment to moment. The tightrope walker carries that pole so that he can make constant adjustments. The steroids are necessary until someday, hopefully, they are not. Accepting help is necessary in this case -- moreso when he is getting tired, & less so when he feels stronger & more energetic. My few days of walking the wire with him have been a real eye-opener!

I will be flying home in the afternoon. My husband tells me that he has been wandering the bed in his sleep, trying to find me. (For those of you not lucky enough to have a menopausal woman of your very own, we are cozier than electric blankets, though occasionally a good deal soggier, too.) I think I will be posting here a few more times. But hopefully I can get back to sleep now!

The Tightrope Walker

2006-04-09T11:38:00.000-07:00

My name is Anne Seals, & I am a high school friend of Chester's, down from Seattle to spend a few days as the in-house companion. I was sure that I would post to the blog every day while I was here. Like lots of the other things I was sure of, my certainty did not match up to reality...
I have missed hearing from Chester on a regular basis -- even got my feelings hurt over it a bit -- but now that I am on the ground, I am gaining a better perspective on that.
Everything takes so damned long in Hemiplegiaville!
I arrived Thursday, & quickly learned how many little time-consuming things there are to do just in terms of basic maintenance. The right hand has to be stretched in a device of torture for part of the day to flatten out the fingers (which want to curl up.) Then it has to be squeezed into another for another part of the day, soaked in ice water when the edema gets bad, lifted & positioned with his left hand for various things... And that is just the one hand!
He wears special pressure stockings ($120/pair!) that have to be coaxed & bullied into position -- I can't even think what to liken it to. Sucking a watermelon up through a straw maybe? In Noplegiaville, putting on your socks takes a few seconds. In Hemaplegiaville, when you are in the hands of a fumbling companion -- well, I would be too embarrassed to post here how long it took this morning! Suffice it to say that it was one helluva lot of seconds!
We have spent a lot of companionable time cursing the foot rest on the wheelchair, which we agree is of piss-poor design. When not needed, it industriously hangs itself up on curbs, scrapes walls, blocks the brake on the right wheel, falls off on the big feet of retarded companions who forget to remove it before trying to stuff the chair in the trunk, & just generally makes itself annoying. (This morning I was dragging the chair behind me on the morning walk, & one of his neighbors had parked a HUGE flower pot on the sidewalk. I veered around the pot successfully, only to have the footrest hang up on a curb on the other side. And meanwhile, Chester was taking off without me -- which I am not supposed to let him do!)
Yesterday, Himself indicated to me that this is the first slow time he has had in a while -- the move from the other appartment is over, & he is not currently having therapy, & there are no medical appointments...
If this is a slow time, I would need to join a gym & get in shape before I could handle a busy time! (Chrys, I don't know how you do it all! Did you swipe Hermione's Time-Turner so that you could magically squeeze extra hours into every day?)
I had talked to Chester on the phone a few times, but was blissfully unaware that all the planets have to line up right for him to be comfortable talking on the phone (or to have the time!) I have studied & taught foreign language, & it is always harder to understand on the telephone when you are speaking a foreign language. When your own language has become foreign to you, the same thing applies. Without the visual cues, & with the slight interference that blurs sounds on the telephone line, conversation is significantly more difficult.
His articulation is subject to change without notice. (The other morning, he bragged to Dawn & me that his articulation was very good that morning -- & then the next sentence out of his mouth went totally astray. Dawn says it happens every time he brags.) He gets very frustrated when words fall apart in his mouth. (Interestingly, when all other words have shattered & fallen on the floor, "Oh, God dammit!" comes out as clear as a bell. Cursing, like singing, happens in a different part of the brain.) He is doing as well as we have been told, but it is an effort, & sometimes there are glitches.
He had told me some time ago in an email that he was getting a FrogPad, so that he could write emails again, rather than having to ask other people to do it for him. I looked up the FrogPad on-line, & was fascinated to learn that it is a tiny keyboard designed for use with one hand. I waited impatiently for the normal stream of emails to start coming, & couldn't figure out why I they weren't. Well, the first FrogPad he got was a Bluetooth device -- & the Bluetooth kept cutting out on him. Vastly frustrated, he returned the Blootooth version for a USB version. The USB version worked quickly & without the technical problems, but now he has the problem of learning to use the thing.
Unfortunately, the instructions are lousy beyond belief. The device is also terrifyingly complex. Every time he sat down to try to figure it out, he got frustrated. Yesterday, I sat down for 2 hours with him, & we puzzled over it together. The problem with the FrogPad is that each key has multiple functions, which have to be accessed by shift-type keys. I don't think there is a single damned key on the pad that has only one function. One key can produce 2 different letters or a number or a punctuation mark or a function or cursor key of some sort, if you first press the right key to access the correct function of the key. (I don't even have a vocabulary to adequately describe the process -- & neither, unfortunately, does the manufacturer!) If you press the number function key down once & release it, a light comes on on the number function key, & pressing the number 7 gives you one result. If you hold the number function key down while pressing the number 7, something entirely different happens. (And since some of the things do not include the creation of a symbol in a document, you can't always tell what the key is doing. On the teaching page, if you are hitting a key that would "page up" in a document, a funny little unexplained symbol appears on the training screen. Good luck finding any explanation of that frigging symbol on the instructions! You have to sit & figure out which of the 4 things assigned to that key is represented by the symbol -- if you can remember which key you gave an experimental tap in the first place!)
Off to the side of the FrogPad, there is a row of 4 little LED lights, each with a cryptic symbol by it. We have looked everywhere in the instructions, & took a quick tour through the web-site, & we still can't figure out what those damned lights are for!
Himself is just arising from his nap now, & we are about to take another run at the FrogPad shortly.
I will post again -- sooner or later... (If I don't strangle myself on the cord of the FrogPad in a moment of despair!)

Disability and Empty Rooms

2006-04-04T20:31:00.000-07:00

Today started off on a good note. I was awakened by the phone ringing, flew out of bed (to find Chester awake and already sitting up) and was greeted by our lovely Social Security officer, letting us know that Chester has been approved for Social Security Disability income. He'll get his first check in June, and has been approved for the full payment amount ($850/month). We are going to meet with the folks at the Social Security office next week to see if we can get the Medi-Cal expedited, since he has been approved for SSD. Apparently, the disability payments are the hardest thing to get approved for, so once the Medi-Cal people are alerted to his approval, he should get Medi-Cal right away. Feels good knowing that the process is almost complete and that Chester will be having a bit of an income starting in June.

After breakfast (goat cheese and cilantro omelettes), Chester and I went on a walk. He has been a bit more shaky and dizzy recently, so yesterday's and today's walks were a good accomplishment. It isn't safe to push through the dizziness and walk when he is feeling off balance, but we also need to keep everything moving. So the solution is to just keep trying- if the dizziness doesn't pass, we allow for a rest period and then try again in awhile. Eventually, Chester is able to stand, feel balanced, and go for a walk. It always feels good once we are started.

The move from Forest Lane is finishing up. Today I finished clearing out the massage studio. After wrapping the rest of the crystals, pulling down the tube lights that lined the ceiling, wrapping up all the beautiful art and sacred objects, and loading the car with massage stools and mirrors, I said a closing prayer for the studio. I sat on the steps and thought about all the people that arrived to the studio for a session with Chester, of all the numbness and pain, tightness and soreness that was carried up those stairs. I thought of my own visits to Chester for sessions, of the breathy anticipation of entering the warm and vibrant studio and finding a cozy table waiting for me. And then I thought of all the pleasure and enjoyment, the relaxation and peacefulness that was generated in that studio, of all the magical massage that Chester offered to his clients. The radiant aliveness of the bodies leaving the studio and climbing back down the steps. I thought of all the transformation that happened in the unassuming little massage cottage. I considered all of the beauty that was generated from the simple gift of breath, touch and presence. Turning my attention to the expansive, hazy view of the Golden Gate Bridge, I then considered all of the people Chester has instructed in touch and breath, all those folks to whom Chester gave permission to do their own sacred work. Knowing that these hands are still working, all over the world, I reminded myself that Chester is still very much at work. His magic is at work whenever one of his students offers touch to a client, loved one, or stranger. Chester's commitment to the breath is deepened whenever one of us bring the breath into consciousness and changes the moment with a single anal breath. With this knowing, I closed the massage studio, now just an empty room with lots of spiders feasting in the corners. I carried the final load down to the car, cried until it was safe to drive, and then whisked the final load of his belongings to Chester's home here at the loft. Tomorrow we will bring the bookshelves down, the final task of Chester's move, and start unpacking the crystals, welcoming them back home.

Another Late Image

2006-04-02T22:31:00.000-07:00

Here is a picture from Marilyn of Chester and Mama Mainard- another gorgeous family portrait of our favorite Missouri crew.

Belated Pics

2006-04-02T06:02:00.000-07:00

Home again home again jiggity jig well maybe more like warp speed. The week that I have been home has flown by. The week and half that I was with Chester flew by even quicker. During my stay, Chester and I had several conversations that he would like me to post on the blog and I will do so in the next couple of days. It will take a bit as we edit via long distance.
In the meantime here are a couple of pictures from the overlap of my stay and his siblings.

Chester with his famous terrapin imitation, slurping on more mangoes. The daffodils were from a sunny bouquet from Marilyn to brighten our week. For days I had this recurring fantasy of Chester with a daffodil behind his ear. Always the gentleman, he indulged me on the last day of my visit.

Family Care

2006-03-30T09:38:00.000-08:00

For the past few days, Chester has been at home with his brother and sister, a true family reunion. On Monday morning I woke up with a terrible stomach flu (which my lover had also developed), and the simple routine of helping Chester get dressed felt like a marathon event. After trying to sleep it off for a few hours, it became clear that it wasn't going to pass that easily, so Chester sent me home. His immune system is compromised and his body has more than enough work to do as is, so I took my germs and cleared out. Dawn and Dan agreed to help take care of Chester, and so it was- the three Mainard siblings together taking exquisite care of one another. By all reports, it has been a beautiful week of family togetherness. I wish I had more details for y'all, but I've been asleep for four days straight!

I just checked in with the Mainard kids on the phone, and everything was going very well. They've been taking great care of one another, sharing lots of heartful time together, and having too much fun. Dawn reports that they were up until 1 am last night "giggling like drunk girls", and then up at 4 am for more laughter! Their time together has allowed them to do lots of reconnection and healing, which I sense was significantly deepened by the circumstance of being alone as a family. I am grateful that the divine timing of it all allowed us all this week- they were given this chance to be together as a family caring for one another, sharing so fully with one another, and I was given four days to hibernate and heal, resting and recharging my body after so many months of borderline exhaustion.

Dawn will be writing something up for the blog in the coming days, as well as hopefully loading up some of the "hundreds" of pictures she has taken this week. In the coming days, we will also be hearing from Chester about his decision around the bone flap procedure, and possibly scheduling that surgery. So stay tuned, as the Healthy Chester story continues to unfold.

May our strength grow with the waxing moon,

Chrys

Three Mainards

2006-03-26T21:28:00.000-08:00

Dan and Dawn Mainard arrived in town on Friday afternoon, and have been having a wonderful visit so far. Being with the three Mainard siblings is a total riot- imagine all the sassiness, wisdom and wit of Chester, multiplied exponentially by three, and then amplified through the lens of a sibling reunion. Whew!

Our weekend has been full of laughs, good food, and heaps of "critter talk". I so love Missouri folk- at least Mainard Missouri folk! Chester's huge heart, soulful communication and wicked humor all seem to be family traits. It is such a pleasure to have his family with us and to be witness to their re-connection. The love and care between all three siblings is palpable, and seems to deepen as they settle in with one another. Dawn is a delight- joyous and kind, full of love for Chester and all other furry beings, and with much embodied wisdom of her own. Dan is a gentle giant- friendly and fiery, arriving bearing gifts of meat and fish, his eyes ablaze with curiosity and knowledge.

I think it appropriate that their visit falls at this pivotal time. This week I'll finish packing up the studio (each of the hundreds of crystals and stones dutifully cradled, wrapped and transported down the hill) and complete the move of Chester's belongings down from Forest Lane. Meanwhile, Chester will be doing some important discernment about his future medical intervention. There is the feeling of a gathering- the gathering of all of Chester's physical belongings around him, the gathering of his family, the gathering of strength and courage, fear and trepidation, support and love. With his blood family and friend family gathered together, it is my hope that Chester (and all of us) will be able to transition into this next phase of his journey. May we move into the unknown with brazen curiosity and gentle courage, guided by the wisdom of our flesh.

Putting out the call

2006-03-23T23:52:00.000-08:00

Chester has a requested that I help him put out a call for healing energy, breath, prayers, light, meditation or whatever you subscribe to and direct it to the infection.

He has experienced two episodes of dizziness today that appear to be related to the infection, not his meds. His blood pressure remains consistently high and the dizzy episodes occur after exertion and are accompanied by increased pressure in his head, distorted hearing and fatigue. Dr Fitzer saw Chester today. He concurs that his symptoms today are much more likely related to the infection and is keeping him on the same dose of antihypertension meds until the infection clears. We also got blood work drawn to rule out other causes of the dizziness.

The pressure in his head and this new type of dizziness has Chester concerned. He asks for your love, thoughts and support to help him reduce and resolve the infection. This was the first day of the antibiotic and he hopes that antibiotic and your healing energy will give him the luxury of time to make a thoughtful decision about removing the bone flap.

Day of Doctors

2006-03-22T17:33:00.000-08:00

Chester has asked me to blog about today's news. Unfortunately, Chester's incision drainage has escalated and now is purulent (yellow/greenish pus). A call to the neurosurgeon last night, resulted in a morning visit today. Dr. Tang believes that the bone flap has become infected. The good news is that he believes that at this point the infection is contained and has not spread to the brain itself. He started Chester on antibiotics but recommends that the incision is re-opened and the bone flap removed. The antibiotics are at best a short term solution but gives Chester time to weigh the pros and cons of another surgery. It would probably involve a 3-day hospitalization with IV antibiotics. Chester would have a "soft spot" on his skull where it would be protected by skin but no longer protected by bone. Anyone else thinking stylish head gear here? Although the procedure would have relatively few neurological consequences, it has all the regular risks of a surgical procedure on someone with an impaired immune system from cancer treatment.

After a quick break at home, we are back on the road to Univ of CA, San Francisco to see Dr. Chang, the neurological oncologist. Chester was hoping to discuss chemotherapy/radiation/surgery options. When she saw Chester's incision, she agreed with Dr. Tang that the bone flap needed to be removed and the infection treated. Because chemotherapy impairs the immune system, she wants his chemotherapy stopped until the infection has cleared. Her recommendation is to do the surgery and resolve the infection and then do another MRI about 4-6 weeks from now. Another MRI, after the last does of Chemo earlier this month, will help give insight as to whether the increase in the mass is scar tissue or new tumor growth. That information is vital in determining his next chemotherapy. Chester has had the maximum amount of radiation, additional radiation therapy is not an option. She does not recommend additional surgery to the tumor itself because of the placement of the tumor. The risks of additional neurological injury from the surgery are too high. The good news is that she believes that Chester is actually better than when she first started seeing him. If the infection is resolved he might be eligible to participate in clinical research trials, giving him more treatment options. In addition there a few drugs like Accutane, which are used to treat cancer but are not chemotherapy, that he may respond to. Basicallly her bottom line was the infection needs to clear up and side effects evaluated before any more chemotherapy.

Chester will start the antibiotics and give himself time to decide if he wants to pursue any more surgery of any kind. Memories of the last surgery still haunt him. We are already talking about how we would try to make sure that this hospitalization is different, but Chester knows that nothing is guaranteed and that even this surgery has risks. If he opts out of surgery, he is exposed to the risk of the infection eventually spreading from the bone flap to the brain itself as well as the consequences of continued tumor growth.

Balance,balance, balance is his mantra tonight as he once again is weighing decisions that impact quality and quantity of life.

Pillows

2006-03-22T17:24:00.000-08:00

X-rated? What could Marilyn POSSIBLY be referring to? Just two tired people enjoying their respective pillows. Although the new blood pressure medicine is lowering his blood pressure, it does have its side effects and fatigue is one. We can set our clocks by the need for the 4pm nap. Fortunately at Chester's place, there is always a pillow near by.

Slacker Girl

2006-03-22T12:33:00.000-08:00

Well, its been a while since writing here, and I promised Chester, his mama, and his sister-in-law Nancy that I would put up their photo's almost a month ago, at the end of their visit. Chester loved that visit, and it was really hard on him (and on mama too) when it came time for her to leave. But they did have a wonderful visit.

I also got a photo of Chester and Bean yesterday. There is an X-rated version, but you have to talk to Bean about that one.

I'm sure you will hear more from someone later, after all the doctor visits scheduled today.

Marilyn
*********************************************************

Well, it seem that I can't get the photo's to load. I will have to play with the images, they may be too large. Hopefully, photo's of Chester, his mama, Nancy, and Bean will show up soon.

mangoes & a paradox

2006-03-19T22:07:00.000-08:00

Wouldn't you know that Chester would have a paradoxical response to his anti-hypertension med? Four days after starting hydrochlorothiazide (HCTZ), a diuretic to treat high blood pressure, his blood pressure was higher and he was retaining a great deal of fluid. At Chester's request, his general practitioner started him on Lotrel, the same prescription his family members use. Today was the first dose and already his blood pressure is lower and he is feeling a relief from the constant pressure of the blood pounding in his head. The relief of the pressure has been disorienting as he body strives to a new equilibium and he has had a lot of fatigue. When I first got here he had a lot more energy than me and needed less sleep than I did, so the fatigue is frustrating.
But, what could have been a frustrating day, has been full of good news and insight. We have discovered the revitalizing effect of mangoes today and he has light snacks of the juicy fruit to give him a boost. A friend is confident that he will be able to repair Chester's PC, which houses over 300 astrological charts, and that news has been a great joy and relief today. He has been buoyed by the numerous phone calls and emails of loved ones. After 10 years of learning with Chester about the breath, over dinner tonight I gained yet another insight and depth of body knowing about compassion from the ass up. For him to continue to teach and witness the impact of his teaching was profound. To top off his day, we found ABBA's Greatest Hits Vol 2 CD while sorting, a CD that he insists has been hiding from him for the last two years. His delight is contagious and inspiring. Never underestimate the healing power of friends, ABBA and mangoes!
Bean

RE: GROWING TUMOR HUMOR

2006-03-17T20:16:00.000-08:00

Aloha All:

This time I am "chiming in" on my own. The reason is that I want to stress the idea that, of all the professionals who have commented on the MRI findings, Dr. Tang is the most expert -- he has been there at the tumor site and that gives him invaluable insight about what is "between the cuts" of the MRIs. So, as far as I am concerned -- the tumor is regrowing. This certainly fits with the probabilities, given the tumor type (and incidentally explains the persistent brain swelling).

That having been said (and this is the humor of the situation) -- it does not change my recommendation with respect to urging Chester (and all who love him) to "cautious optimism." If we have learned anything over the past 18 months, it is that our Chester is astoundingly, blindingly and absolutely delightfully "improbable." Life is so full of folks (myself included) who have been handed "death sentences" on the basis of "probability" and yet are still here causing trouble long after the demise that was predicted, that this one certainty -- that there is residual tumor -- simply cannot be given a weight greater than it deserves. So, Chester must turn his attention to which, of a plethora of choices, he should choose. Fortunately his animal card readings for this phase of the moon have amply supplied him with clues about this. And, this seems to fit in quite well with the Tarot reading described by Chrys. I have not a single doubt that Chester will choose the "right" path.

And that is the focus of my energy on Chester, right now. I applaud his "cleaning house" -- it is a part of this process -- regardless of outcome. In our last phone conversation he was quite adamant that he wanted to "gift things away" while he was able to enjoy the delight of the recipients. Hear, hear! I have been struggling with the same thing for years.

Finally, I am currently watching the Kamehameha Schools Song Contest -- they are featuring Lena Machado -- a "forefront" of Hawaiian music in the '40s -- who represents the Hawaiian attitude toward sex (very free!). Fun!

So, Aloha nui loa -- malama pono.
Bill

Growing Tumor, Tumor Humor

2006-03-17T09:49:00.000-08:00

Dear Ones,

I sit now at my home in San Francisco. Bean, a dear friend/student/companion arrived yesterday from up north to spend over a week with Chester. This is her second visit, as she spent a week with Chester before the breath class in January. After getting her settled in, I climbed on the BART, crossed the Bay and arrived home. All of a sudden, I find myself alone - my vigilance begins to drop, I weep for hours, cook a huge chicken roast dinner for two and relax. At midnight, my roomate (quietly) places a dish in the sink and the noise has me awake and out of bed --what happened, what needs to be done, is Chester ok-- and it takes me a few minutes to realize where i am and that i have nothing to do but get back in bed and breathe myself to sleep.

The past ten days were quite a journey with Chester. Long days spent packing his apartment, touching each of his belongings with care and curiosity. Gathering his heavy collections- crystals, stones, bones, books, photos, teachings, dishes, goblets, tools, baubles, sarongs, saris and scrolls -emptying his home into the car and delivering loads of his life to Chester. Stacking things neatly in the companion bedroom so as to keep the path clear for Chester to weave through the space, his body and mind dedicated to the task of sorting, revisiting, reuniting and recycling. Emotions are running fiercely together through the space- each object bringing a quiver or quake of energy with it into the apartment. Chester watches me engaged in the labor of love and wants to help me carry the heavy boxes. Instead, I open a box onto the massage table and he begins sifting through it, delivering objects into bags marked "Friends" "Thrift" and "Trash", and a box to "KEEP".

I bring the shredder and filing cabinets down the hill. On my next trip up, Chester builds a box. He discovered that he needed a box to hold the shredded paper, and finds a flattened box outside. He becomes determined to build the damn box, and when I come home there is a huge DELL box, thoroughly taped together with packing tape (a long horizontal row of ragged, teeth-marked strips of tape, but sturdy!), half full of white and yellow shards of paper, his taxes from 1992 and hundreds of other pages. He has a charge from the accomplishment, and a fatigue from the shredding, shredding, shredding. At the end of the day, we both rest in the afterglow of a productive day and weary determination of the task at hand.

We keep ourselves laughing and communicating clearly, refining the art of Tumor Humor- as embodied in this image of Chester, wearing a hat that was within a big bin of some of Chester's most treasured temple objects- wood smoothed by hundreds of butt massages, cloth saturated in magic, the tools of his rituals over the many years-

The week was made all the richer by a wonderful candlelight sushi feast with Annie Sprinkle. She is busy with her triumphant revival after a nine month breast cancer ballet. She and her lover Beth Stephens have been very busy living, creating, and performing art together (check out www.loveartlab.com), so it was a treasured gift to get her over for an intimate dinner date. Here are pictures from Chester and Annie together- bald and radiant in the mid-cancer October sushi dinner, and again this past Monday.

The week ended with a visit to Dr. Tang, the neurosurgeon who has been our primary "head doctor". He read the MRI report, looked at the new films and compared them with those of December, and told us in no uncertain terms that there is new tumor growth at the site of the primary tumor, and that it is "about 10-20%" regrowth. He then proceeded to launch into the myriad of treatment options that Chester can now choose from, recommending medical intervention "soon". These treatment options are both surgical or non-surgical. The surgical options include things like opening Chester's head back up, removing whatever tumor growth is apparent, and laying down chemotherapy "wafers" or inserting a "balloon" that is filled with radiation therapy, making Chester "radioactive" for a three to five day hospital stay. The non- surgical options include an intense radiation treatment where they zap a trench around the tumor site, or trying to switch chemotherapy treatments in the hopes that a new kind of chemo will halt the growth. Dr. Tang said there were "up to 30 treatment options to choose from, and there are 30 because there are no clear winners". He guessed that any one of the options would hold a possible "10-20% efficacy rate" or "no effect at all". Dr. Tang is a gentle and kind man, and a straight-shooter. I sense that it is this combination that allows him to meet with people every day who have endangering growth or injury in the brain, and to do so with a peacefullness and assuring presence. He gave us a sketch of three treatment options he would recommend (the balloon, new chemo, or the intense radiation) and recommended that we talk to Dr.Chang, the brain tumor expert at UCSF. Jaime was making that appointment yesterday afternoon immediately after we returned home. We will discuss the treatment she recommends, do lots of our own research and discerning and witnessing, and Chester will be making some huge decisions about the potential medical interventions that are available to him. We left the appointment, both sobered and moved by the information we had just received. I grabbed a sprig of jasmine from the plant draped over the fence, and as we drove to the Alta Bates thrift store (benefiting the hospital where Chester has been receiving treament) to drop off a load of Chester's belongings, we talked about the additional medical intervention option that Dr. Tang hadn't mentioned- none. We talked about carefully weighing potential benefits and risks of any surgery or treatment- would undergoing a resection risk all of the mobility and speech that he has been regaining? (Dr Tang: "potentially"). Would a new chemo agent make him naseuous and dizzy? We drove in quiet conversation, and I assured him that I would support him through this, no matter what we face. An image from his tarot reading with Annie returned- that of surfing, of "riding the waves", which we will continue to do with our surfing mates: Grace and Flo, Prudence and Joy.

After dropping off the boxes of thrift items (though only after rescuing the bag of stuffed animals- a gorilla, three frogs, a raccoon hand puppet. . .) we decided that intervention certainly shall include frequent sushi-treatment, beginning immediately. So I ran into the fish market for half a pound of ahi tuna, red and quivering with brain food goodness and tender pleasures.

Keep, Gift, Donate, Trash

2006-03-12T21:30:00.000-08:00

Whew.

It has been a very busy week. Our days have been full with the task of moving out of Chester's apartment up at Forest Lane. Jaime has been hard at work preparing the house for sale, which includes painting all the walls. The house must be ready for open houses starting April 1 so we are digging into the enormous task of emptying it out. For the past five days, I've been making trips up to Forest Lane and moving boxes and furniture up to the garage, emptying out drawers and closets. Discovering huge amounts of Chester's belongings in every nook in the apartment. We haven't yet touched the massage studio. Monday and Tuesday, Chester and I will be going up together and once the apartment is empty we will then begin closing up the massage space.

The whole project is an incredible dive into Chester's life. Piles of witty and froggy t-shirts. Huge stacks of books, from bodywork guides to sci-fi and fantasy paperbacks. Boxes of cards, all signed by dozens of grateful students at the end of classes. Crystals and rocks, bones and feathers. Toys and Treasures, Critters and Dieties. Every box I open has Chester all over it- even the most seemingly mundane objects are charged and curious resonances abound. And with every object we come across, Chester must ask the question; keep, gift away, donate, or trash? Our space here at the Bakery Loft is limited- I am busy trying to work storage magic and maximize the space we do have. Chester's abilities and activities have also changed, making some very personal belongings not so practical to hold onto. So we are taking it one box at a time, and will be in the process of sorting belongings for many weeks to come, I reckon. Already Chester has gifted away many items: Big mirrors and a few bookshelves are now at Joseph Kramer's office/classroom, where they will be put to work in service to continuing the teaching. Books are starting to find their way into friend's hands. And Chester is beginning to put into practice the "Living Bequest"- passing on some of his most personal and sacred belongings. This process will unfold into the coming months, and I am very grateful that he can make conscious choices about these gifts.

With all of the moving, Chester has been spending a fair amount of time alone. While I drive up to Forest Lane and pack and haul boxes, he has been spending time here at the loft. I set up a "sorting station" for him and he spends several hours sifting through his boxes. Today he spent over five hours alone while I went to the city to get my ear lobes pierced. These stretches of time alone are a good indication of his level of independance, and I feel mostly comfortable with trusting his safety and well-being while alone. There is comfort in having friends in the building and neighborhood who could be called if Chester needed assistance.

On Friday Chester finished his third intensive does of chemotherapy. Again, fatigue was the biggest side-effect of the drugs, and Chester was pretty sleepy all week, with short periods of fiestiness and wicked humor mixed in to keep us all on our toes. But this weekend he rallied back and was quite productive and active, sorting through boxes and helping me rearrange the apartment to accomodate the new additions to the home. It feels good to have more of his belongings here living with us. Dragonflies in the bathroom, tapestries on the walls, big crystals grounding us, making it home.

Musing on an MRI

2006-03-08T20:55:00.000-08:00

Aloha All:

Chrys has asked me to comment here about the recent MRI done on Chester. Gill sent the actual reports to me -- and that allows me to do some "massage" on the information. The very first thing that stikes me about this report relative to the previous one is that the mass (which was clearly evident on the previous study, but was small and could be interpreted as almost anything -- from scar tissue to simple post manipulation swelling) -- has changed its SHAPE! It is, in fact, very slightly smaller in one dimension and about 1/2 cm larger in another. A striking feature of the current MRI is actually rather diffuse brain tissue swelling -- thought to be related to therapy and even involves parts of the right hemisphere. The good news here is that there is no disruption of the architecture of the ventricals -- so we are NOT talking about something that is exerting pressure on any part of the brain. There is increased fluid content of parts of the brain -- and that in turn is causing the previously seen "mass" to be deformed. Just as when you squeeze a balloon -- depending on the shape, a small pressure in one direction may cause a really large displacement in another. To be honest, without a third vector, there is no way to estimate if this is, in fact, an enlargement or a simple "deformation." Chester's physicians are almost obligated to give him the "worst case" scenario -- more is the pity. Given Chester's current state of "buxom health," I tend to feel that the pessimism is somewhat misplaced and I have urged him to "cautious optimism."

So, that is the "hard science" version -- cannot make assumptions -- but I clearly respect and admire Chester's physicians and will bow to their experience. On the other hand, energetically this mass does NOT have the same "signature" as the original tumor -- so rather than throw our hands in the air, let's concentrate on moving, with ease, elegance and efficiency, through this time.

Aloha nui,
Bill

Marching Forward

2006-03-07T20:35:00.000-08:00

I arrived back at Chester's loft this morning after four nights away. These short periods away always bring lots of perspective, both on my own experience of being with Chester through this journey as well as a fresh perspective on Chester's health itself. When I arrived this morning, Chester looked wonderfully radiant and healthy. For day two of his intensive chemotherapy course, he looked full of energy and had a heightened sense of humor (even for Chester it was high). A few periods of brief fatigue yesterday, but overall the chemotherapy continues to agree with him (as his friend Barbara wrote to Chester last month "Leave it to you to be so weird that chemo AGREES WITH YOU!!!")

After settling in with Chester and getting updated on the weekend's details from Gil, I decided to make a trip to the bakery to get some breakfast scones. On my way out of Chester's gated parking lot, I got into a little car bang-up. I was following a contractor's truck out of the gate, and after he pulled forward he then threw his truck into reverse to park on the street right next to the gate, and I had already rolled forward enough to get hit. No one was hurt (always the important thing), but the right front bumper of Chester's car is pretty banged up. The car is driveable, also important, so we haven't decided if we are going to get the needed repairs yet or to file a claim or not or what. But that was a piece of excitement that we didn't need in our day. Jaime arrived just as I was standing on the curb waiting for the police officer and exchanging information with the other driver. Sigh. I ended up walking to the bakery a little later to help clear the adrenaline from my system.

Today was supposed to be the last day of Chester's Rehab Without Walls therapies. But when Jennie the speech therapist arrived, she told us that insurance had agreed on one more week of coverage (yet another little gift from the insurance allies). But because of the therapist's schedules, both of the additional sessions are scheduled for tomorrow, making the "extra week" really an "extra day". But we'll take whatever assistance we can get. Chester is specifically working with them now on maximizing comfort and safety with his new bed, which has been very comfortable for him but still he still has some strategies to master. As Chester's time with his rehab therapists comes to a close, I am reminded of how much great work they have offered Chester, and how important they have been as allies in this process. There was all of the core work of assisting Chester in learning to walk, articulate and communicate clearly, take care of his right arm, ambulate safely in the home, and maintain and build strength and flexibility in this changed body of his. They also offered us countless strategies for thinking creatively and problem-solving all the new complexities of moving around in the world in a hemiplegic body. From all the velcro straps and non-slip padding devices to finding surfaces to stretch out Chester's right hand while out in the community, the Rehab Without Walls crew offered so much support and assistance during the past five months. This was a critical learning phase not only for Chester but for his "companion crew" as well. With our strong bodywork foundation, we were able to learn so much and deepen our sensitivity to how to best support Chester's body as it regenerates and finds new balance. I am proud of our work- immensely proud of Chester for his dedication and incredible spirit since day one, and proud of all the friends who have "been with" his body so well. After six months, his arm is still supple and relaxed and has not locked into a retracted position. After six months, he is walking with confidence and trust. After six months, he has only had a few minor falls and no major injuries. All major victories in my mind.

We now shift attention to the task of moving from Forest Lane, packing up and making decisions on all of Chester's belongings. We were due to start the move tomorrow, but Chester will be doing his two therapy sessions instead and then a friend is bringing dinner. But I've already begun the process from this end, organizing the space so we can fit more stuff down here and maximize the storage potential of this apartment.

Stay tuned for more information on informal day classes and other opportunities to spend time and learn with Chester- we are still figuring out the details but will let you all know as soon as possible! And my digital camera is back up and working so look out for more current pictures coming soon!

The Latest News

2006-03-03T15:23:00.000-08:00

Today we spent the morning with Chester's two oncologists, who gave us the report on the most recent MRI and checked in with Chester's overall progress. The results? That overall, Chester is doing wonderfully- his physical rehabilitation continues to go well, his speech is improving and he feel pretty good most days. Everyone that has seen him recently is commenting on how bright eyed and bushy tailed he is looking.

All of that said, the MRI report had some bad news. His primary tumor seems to be growing again. The December MRI did not show any signs of growth, but three month later it is starting to increase in size. Not much, which is good- the site has only increased in size about half a centimeter. This is still in the area where he had the tumor removed in August and where the radiation was focused, so they are unable to determine just how much of the white matter is swelling or scar tissue, and what is new tumor growth. But there does seem to be some additional infiltration of the tumor mass.

While it is never easy to receive news that a tumor is growing in your brain, Chester took it in stride. He registered shock, sadness, and now seems to be moving forward with the same determination and will to live as he has had for the past six months. We both agreed that how he feels on a day to day basis is our most important gauge of his wellbeing. We will be getting another MRI in three months and consulting with the experts at UCSF to see if there is any more treatment to consider. Meanwhile, he will begin his next chemotherapy round on Monday and will continue to envision predators gobbling up the tumor cells. We need those panthers to be more fierce than ever, swift and sure in their kill, precise and focused in their mission. Please join us in continuing to hold the intention of "no growth, slow growth" for his brain cancer cells.

We returned from the hospital to find his new bed delivered. Another generous gift from Jaime, a mechanical massaging bed! The mechanical lift will help him keep his legs elevated in the night and can also help him sit up with less effort. The bed is super comfortable and has a nice purring massage feature as well. Chester's first night sleeping on it will be the true test, but we all sense that it will be a big improvement over his futon that he has slept on for the past four months.

I am scurrying around trying to get the house organized again (after our crazy shifting of everything this morning to make room for the new bed while squeezing the futon into the guest room). I am at home for the weekend so Chester will have other friends staying with him. There most likely will not be another posting until Tuesday. But know that Chester is well-held, doing well and moving forward. From all of my research into Glioblastoma Multiformae, six months with only a half centimeter of new tumor growth is a HUGE victory, and hopefully means that Chester will be a longer-term survivor of this aggressive cancer. I am so in awe of his daily work at living, and know that the love and support from all of you out there is a major enabler for his daily survival. Thank you, and may we all savor each day of our lives, basking in the beauty of being alive together.

No News Just Yet

2006-03-01T21:29:00.000-08:00

Hey All,

Chester had his six month MRI on Monday, and we were supposed to meet with Dr. Tang today to have a general check in and for him to read the MRI films. But he got called into an emergency surgery so Chester's appointment was postponed. We will be meeting with both of his oncologists on Friday and should get the full report then. Just wanted to let everyone know that we haven't received any new information just yet.

We just finished a lovely sushi feast with Jane and Dylan, both members of the team at The New School of Erotic Touch (Joseph Kramer's school). After once again testing the question of "is there such a thing as too much sushi?", we sat and talked for awhile and then Jane began looking through a couple of Chester's many big boxes of beautiful fabrics. She is the official Healthy Chester seamstress- creator of the monkey pants seen on this blog and some of Chester's favorite pillowcases. She took home a big bag of fabric and I'll be bringing more to the office tomorrow.

So begins the long process of gifting away some of Chester's belongings. As Jaime prepares the house for sale, we will be spending a lot of time up at Forest Lane this month packing up Chester's apartment and the studio. We'll together sort through his belongings, figuring out what to keep, what to gift away, and what to donate to thrift stores. A long and emotional process to be sure, but I'm glad Chester can actively participate in it and see that his belongings will find good new homes.

Off to bed soon. Another good day, complete with a beautiful therapy session with June and a great trip to Berkeley Bowl where we stocked up on fresh veggies and other nourishments. Chester's current favorite is a chopped salad made of baby bok choy and fresh anise root, dressed with buttermilk, mayo and mustard. We've made three batches this week and another will be prepared soon. I encourage him to follow his cravings, a good guide to what his body is needing for all the incredible work it is doing. And as we head into another round of chemotherapy, starting Monday, I am glad he is fueling up on sushi, greens, calamansi juice and chocolate covered cherries. All power foods in my book.