Rainy Sunday

Mama and Nancy departed this morning, whisked away to the airport by Marilyn. It was a tearful goodbye for Chester and Mama. Just after they left, it started raining and hasn't let up much. Feels appropriate to welcome the rain after a crisp and sunny week with the family. Chester is sad to see his Mom go, and is so grateful that she was able to make the trip. Next month we'll be welcoming his sister and brother out for a visit.

Another great session with June this afternoon. We are going through all of his exercise routines as I videotape them and pay careful attention. This will be the last full week of Rehab Without Walls, so we are making sure that we are prepared to do self-directed rehabilitation. Here, some images from Chester's last session with June. In one, she is taping his toes up to create a deep stretch and activation through the little piggies.



This "piggy bondage" is important to get the toes active, which helps with balance and gait. I had never noticed how much the toes activate while walking- they spread, lift and curl down with each step. I so appreciate how witnessing Chester's rehab sessions has allowed me to pay closer attention to the body, learning the subtlest details of movement and becoming familiar with the tiniest of muscular activations. As bodyworkers, Chester and I share an endless curiosity about the body and his rehabiliation process has certainly been enhanced by our constant attention to the details.



This image is of Chester walking without his cane and without his ankle brace. This "naked" walking allows Chester to gain confidence in his body. Both the cane and the brace are still necessary tools, but now Chester is able to discern when they are needed and begin to gain experience in moving without them. It is startling to see him walk without the cane- even with all of June's extra support, he is doing most of the work and balancing on his own. A part of me experiences disbelief when I see it, just as I experienced disbelief when I saw him take his first few steps after surgery, almost six months ago.

That's right- six months! If February had a "30th", it would be the six month mark post-op. I am experiencing a bit of shock with it- realizing that for the past six month we have engaged in a daily process of rehabilitation, regeneration, survival, learning, grieving, celebrating, and simply being ALIVE. Back in August, while witnessing Chester's degeneration before surgery, six months of life seemed to be an impossibility. His surgery on August 30th removed enough of the primary tumor that he has now had this time to be alive, to continue teaching, to be held in a world-wide network of love and support, and to experience whole new aspects of embodiment. These six months have been a gift, and now time stretches before us, without any sense of an end. All of the statistics and prognosis predictions have fallen away, and we now live in cahoots with the mystery of it all, not pretending to be able to predict where this will go.

Tomorrow morning, we probe into the mystery with modern technology with Chester's next MRI. The doctors will look at the new film on Wednesday and again on Friday, so we'll keep you updated with those readings as we receive them. In the meantime, dance in the unknown, and celebrate the darkness of the New Moon!

Lemon Buttermilk Pies

Saturday morning, Mama and Nancy Mainard's last day in California before flying back home tomorrow. We are relaxing at home, a beautiful lemon buttermilk pie just came out of the oven (after we finished yesterday's pie for breakfast!).

Chester is feeling pretty good. A few mornings ago he had a long dizzy spell while waking up. Hard to be dizzy and need to pee at the same time, but we got through it. No more dizziness since then, thankfully.

We heard that Chester's insurance company has given us an end date for the Rehab Without Walls coverage. Tuesday March 7th will be his last day of therapy. When MediCal gets approved, we'll most likely be given another 20 sessions or so of outpatient rehabilitation, and the gift of it is that June, Chester's "miracle worker" occupational therapist, works in Herrick outpatient so we'll be able to continue seeing her. But there will most likely be a month or two gap in between. So we are preparing to commit to an in-home, self-directed rehabilitation program. We'll be asking folks who are interested in assisting Chester with his rehab exercises to come over and learn some of the routines. More details to follow, but local folks may want to check in to see if they are available to assist Chester in this way.

Another opportunity to help out: Folks who have already stayed with Chester and are familiar with the routine are invited to stay over on Sunday March 5th and Monday March 6th. We'll need someone available from Sunday afternoon through Tuesday morning. Please let us know ASAP if you are up for it. I won't be available to train new folks for this weekend, but if new people are interested in offering some days as a companion for Chester, please be in touch and we'll work out a good time. I am still here about 3/4 of the time, and I need more help, so I can keep myself healthy for the long haul.

We are in the process of organizing some informal classroom time with Chester for March. Most likely it will be Thursday afternoons. More details will come. The master teacher is still ready to be in the classroom circle, offering guidance for graceful bodywork, leading us in the breath, and sharing his experience. Stay tuned for dates and times!

We're now going to plan a special dinner for Chester's last night with his family for this visit. They tried sushi earlier in the week, but I don't think we'll convince them for an encore sushi feast. . .

Missouri Gals in the Berkeley Hills

We had a clear and crisp day for our drive up into the Berkeley hills. After stopping to take in the views of the Bay Area, we continued on to Forest Lane and visited Jaime's home where Chester lived for over two years.

Jaime is putting the house on the market, so soon we will face the challenge of fully emptying Chester's apartment and massage studio. Chester and I are in dialogue about how to face this task, and will be tackling it in March. Sure to be an emotional ride for all of us, but in many ways it is the best thing. This way, Chester can be with us and make decisions about what to do with his belongings and participate in the process. Like every other phase in this process, we will clear out his old apartment and his beloved massage temple with consciousness and grace.

On the way out of Jaime's house, we picked dozens of Meyer lemons from Jaime's tree, and in the coming days Mama has promised to make Chester a lemon meringue pie or two. Yum Yum.

Yesterday Chester had a particularly grueling physical therapy session and sustained a minor injury. He was practicing floor transfers- getting up from the floor into his wheelchair, so that he knows how in case of a fall. It is hard work but necessary. Just being on the floor and having to work himself up into the chair has a strong emotional charge, and is also very physically exerting. He successfully got up into his chair five or six times, and was really getting a hang of the technique. Of course, what works for Chester is the exact opposite of the standard method- going backwards once again! On one attempt at getting up, however, Chester fell backwards, hitting his head on the edge of the commode and straining his knee. We ended the session early (after getting back up into bed), and elevated and iced the knee. It is not a major injury, but we are taking precautions and keeping it rested.

Gil and JD just arrived with a turkey dinner. So I'll sign off and go eat! Oh! An apple pie for dessert!

May you all be full of breath and joy,

Chrys

Mama Mainard

A lazy Sunday spent with family. Our morning stretched into the afternoon as we sat and chatted over many cups of tea and bountiful plates of coffee cake and muffins, bowls of berries and mugs of coffee and tea. Mama Mainard slept in until close till noon, after being up in the middle of the night for a few hours. Nancy, Chester and I sat and talked for awhile this morning, Marilyn came and visited for a long stretch, and then Mama joined us when she woke. We eventually gathered ourselves up from the table and took a ride to Trader Joe's to stock up our fridge and pantry for the week. Then a quick stop at Safeway for essential ingredients that they don't stock at TJ's- rice krispies and marshmallows so Mama can make rice krispie treats.

By the time we got home, it was time to get dinner ready. As the chicken roasted and the mixed root veggies steamed, we continued to sit and talk. There is something particular about family talking together that is beautiful to witness. The familiarity, the shared stories, the common body language. Seeing Chester with his mom is quite magical- she shares the same sassiness and strength that we know and love in Chester. Feisty and gentle both, she shares an exquisite connection with her son. I can see the communication flow between them, much of it unspoken. Equally beautiful is watching Chester be the child with his mother, beloved and a bit vulnerable.

It is near 10 pm and Chester continues to sit and visit with his family. He hasn't napped today and yet his articulation is still good, and I'll probably be ready for bed before he is tonight. The extra motivation of visiting with his family is palpable.

Some images of Chester and Mama Mainard. More photos will come shortly- there are many cameras out and active this week, to be sure.

Poker with Family

Chester's Mom and Sister in Law arrived today. I picked them up at the San Francisco airport this afternoon, after a long flight delay they were glad to arrive. The drive back to Oakland was quite humorous- Mama was marveling at the sights and traffic of the Bay Area, wondering out loud why anyone would choose to live here with such traffic! But once we got on the bridge traffic started moving and we made it over here in good time.

After an easy dinner from Asqew Grill (skewers of grilled meats and veggies with rice, cous cous, potatoes), we delved into a family game of poker. We all emptied our pockets of spare change, divied it up and played five card stud. Chester won by a landslide, though we all had a few good hands.

They are all sitting around the kitchen table now, laughing and chatting. It is beautiful to see Chester with his Mama, sharing belly laughs and clever humor. It is comforting just to have the family here, and we are looking forward to a good and relaxing week. Maybe even an excursion to see the ocean!

And for me, after 12 days of being at home while out-of-towners stayed here with Chester, I am glad to be back at the loft. Settling back in, catching up on what has happened this past week, updating the calendars, and relaxing into the rythym of being here with Chester. Ahhhh... a big exhale.

VALENTINE'S AND BEYOND

A posting from Chester's companion this week, posted via Chrys:
***

J. Franklin here, visiting this week from Boston; met Bill as he headed back to Hawaii.

Delightful, busy Valentine's Day with 5 hours of OT and PT. Chester produced a cherry compote Valentine dessert in the second session.

Wednesday almost as busy. A Rehab Without Walls PT fieldtrip to a giant Asian supermarket to stock up on daifuku and lychees. I got to meet those famous blog personalities Jaime and Marilyn for the first time. Marilyn is helping fix up the apt. next door where Chester's Mom and Nancy will stay next week. We shared a lovely moment dancing to Billie Holiday. Joseph Kramer and Dylan Vade joined us for sushi dinner; Chester of course ordering for all. What a swell bunch o' guys. Chester was up till midnight from the great energy.

Thursday--today--we had a quiet morning listening to ABBA and sorting computer photo albums. 4 hours of speech therapy and OT. This time Chester prepared poached salmon and yams. Good improvement over last few days in endurance, speech, energy. And lotsa lotsa great food.

Prayer Focus

Hello everyone,
Its been a long time since I've posted information here for your perusal. Life has been an on-going intensive, so to speak. But I am here for a specific purpose. I stop in to see Chester, usually in the morning after I get off work. Last week during my morning visit, Chester, Jaime and I had a conversation about Chester's head wound. Chester has been told by many health professionals that the head wound is doing very well, and not to worry about it. But it is still seeping puss and that other gunk that comes out of wounds that have not quite healed up. Though he has heard over and over not to worry about the head wound, it is a constant reminder of the surgery, and it is also very aggravating to him. To all of a sudden having to 'catch' the fluid before it starts running down onto his neck, but more importantly, the worry that another infection would take hold in the opening. He worries about getting another bad infection, and stated that he could not deal with having to go through another 'procedure,' especially since the last one set him back so hard. (This refers to when he went into the hospital and the doctor re-opened the surgery flap and scraped the skull. The wound cultured out a staff infection. His stay at the hospital was very traumatic for him).

Jaime pointed out to Chester that since he can not see the top of his head, he can not see how much it has healed especially over the last month. Because of all the drugs he is taking, his immune system is severely impacted, so the healing is just taking longer than is usual. All of this is well and good, but it does not help Chester to have such a physical reminder of his disease, and the possibilities of what could happen.

So what I'm asking is that everyone continue praying/meditating/sending healing energy/and doing any other type of wuwu you have been doing for Chester's healing. I just ask that you focus a bit of that on the healing of the head wound. This is not a big physical problem, but greatly important for Chester's well being. One of the characteristics for long-term survival of any illness is the belief that you can beat the disease. This head wound chips away at Chester's belief system, and his belief system is challenged at this point. I hold the belief that he can and will be a long-term survivor. I ask that you join me in holding this belief for him (it just takes choosing to believe - don't analyze it, just believe it).

I thank everyone for your on-going support of Chester, in all of the wonderful ways that is happening. This is a long-term commitment, and I thank everyone for their faithfulness to that continued support. The Catholic Church uses a term that I really like.... Ordinary time. No great feasts or celebrations, nor any great trauma.... We are into the ordinary time. I'll keep you informed on how the healing is going.

Love to all, Marilyn

Flamingo

Chester is constantly learning new exercises and stretches to activate his right side.

Sometimes, he makes up his own. As we were getting out of the car yesterday, he spontaneously stood on his right foot and struck what we quickly named the "flamingo pose". We talked with June during her session yesterday and she approved this as a great way to completely activate his right leg and also build trust that it can, in fact, support all of his weight!

Here, he is doing the flamingo pose, using the corner of his kitchen as support.

Fish, Flexion and Fun

Chester and I spent a lovely weekend together, savoring the time we have with one another before my 12 days at home while out-of-town friends are visiting. It is always a sweet sorrow to pack my bags and prepare to go back across the bay to San Francisco- while I need and welcome the rest, opportunity to catch up with friends, the chance to make some income, and the change of pace, it is also so difficult to be away from Chester. So much of my presence and awareness stays here with him even when I am away, and this split is difficult to settle in to. And while Chester welcomes the chance to see his other companions, we have a rhythm and ease in living together that is comforting for him. And so we celebrate our time together, and make lots of allowance for the time apart. We enjoyed our last evening together with a sushi feast and watched "Madagascar", a very funny animated feature about zoo animals who find themselves in the wild. We laughed heartily at the animal antics and danced along with the lemurs.

Today was another good day of rehabilitation. The highlight of the weekend (other than the quality time together) was Chester's dorsal flexion in his right foot!!! To explain- If you pull your toes towards your knee, you are experiencing dorsal flexion. This action is a critical one for proper walking and balance, and is controlled by very small muscles in the foot and ankle. Regaining this action will be key for Chester being able to walk more independently. To date, he has only been able to actively flex his foot a couple of times. But over the last few days, we have witnessed two distinct times where he was able to activate dorsal flexion three or four times before the muscles fatigued and quieted. Funny that such a small action can feel like such a huge victory! This also points to the overall reclamation of his right leg, which is coming more and more online as more muscles are activating.

His Occupational Therapist worked with his arm today and continued to work wonders. She coaches him through many different exercises and stretches to smooth out his arm and shoulder, stretch the muscles and begin to activate them. It is coming back much more slowly than his leg, but there is definite activation. It is not a "dead arm" at all. Our main focus with his right arm is to keep it smoothed out and extended. There are many more flexor muscles than extenders in the arm, and they tend to activate faster than the extenders. This leads to the curled and locked arm that is so common in disabled folks. By constantly relaxing and extending his shoulder, elbow, wrist and fingers, we are countering that tendency and keeping it loose. This is a daily practice- after every walk or exertion, or any time Chester gets excited or anxious, we need to actively smooth out his arm so it doesn't lock up. I have found that his hand particularly relaxes when I smooth it by dragging it over my own arm and hand- allowing his hand to "massage" me. His hand seems to know and love this, and it always seems to relax when it is in contact with other flesh. He wears a hand paddle most of the time and now June has him rigged up so his hand stays on his lap and doesn't get banged around so much.

First thing in the morning Chester will begin his chemotherapy course. Please send him love and support as he once again unleashes the "chemical predators" into his system to hunt out and devour the tumor cells. He will be having a quiet week, resting a lot and still trying to do as much rehabilitation as he is able. We'll keep you posted as the week progresses.

Wishing you all a beautiful and restful week!

Mystery Boxes

A rich, full day of heartful connection with Chester. Perhaps it is the lunar New Year (welcome fire dog!), or the new moon itself, or the coming of spring as marked by Candlemas yesterday, or any other number of fresh breaths in the air, but recently we have been feeling vital and alive, refreshed and more open. A lovely place to linger.

Today we were waiting on the delivery of the Temodar from the drug company. A delivery arrived at about 1 in the afternoon. We sat in awe of receiving such a gift as a free delivery of medicine, (free shipping too!!) and took deep breaths as we opened the box. Much to our amusement and surprise, the box had a different kind of pill. It was the shipment of probiotics that Chester had ordered just yesterday. $50 supplements rather than $3000 chemotherapy.

Several hours later, the chemotherapy pills did arrive, in a much less climactic delivery. So now Chester is all set for his next round of treatment, which will begin on Monday.

We also have an intake interview for Social Security Disability set up for next Friday, which feels very good. With the help of our wonderful social worker at the Cancer Center, we have really got the ball rolling with getting Chester hooked up with public aid programs. A big relief and were going to navigate the system as best we can together.

We are looking forward to a sweet and relaxed weekend. Tomorrow morning we are planning on taking a trip to "Ranch 99", a big asian grocery store in Richmond. Chester is especially excited about some juices and lychees and daifuku.

On to bed, it is way past bedtime!

Causal Chains Unravel

Cause and Effect are hard to discern when one is on a journey with brain cancer.

When speech is extra difficult to come by, where do you look for the cause? Is it the increase of dosage in one medication, or the tapering of another? What is causing that sensation of pressure in Chester's head? Is the aching in his leg from the steroid taper or from the exertion of physical therapy? And why is all of his skin itching, all except the one place that has a bit of a rash?

Such are the questions we grapple with every day. Chester senses into what he is feeling, reports as best as he can what he is experiencing. I read all of the different medication literature inserts, trying to sort out the side effects of the half dozen drugs he is taking, ask the doctors questions, and do research online. We observe daily, log vital signs, and track changes in several logs. And still, often we are left puzzled. Swimming in the unknowing. Allowing the mystery of it all.

For the past several days, Chester has had long stretches of wonderfully fluent speech, but today was extra difficult for him to get words out. Mostly, he has been confident and at ease with transfers to and from his wheelchair. Tonight he was cautious. After a shave and a shower, he decided to "call it a day" and is now resting in bed.

Chester's oncologist cleared him for his next round of chemotherapy yesterday after looking at his blood levels and making sure all else was ok. She is increasing the dose from 300 mg/day to 400 mg/day. We are hoping he will continue to tolerate it well and that fatigue will be the only side effect. He will begin the next course on Monday, Feb. 6th and will take 400 mg. of Temodar for five days.

The rehabilitation team is continuing to challenge Chester with new exercises and refinements of his movement. I am learning as much as I can so I can continue assisting him with rehab. This picture is from yesterday's Physical Therapy session. Chester is practicing a new exercise, where he raises his strong left leg in the leg rest and then uses his right leg to scoot around, pivot, and do a little chair dance. This push-pull action activates the muscles in his leg and is a safe exercise to do while alone or without someone to spot him.