New Doodad

Hi all:

As I was perusing the internet this morning I came across gVisit, a really neat site by Google that allows you to view a world-wide map of the last 20 visitors to a site (for free - upgrade gives 100). Try it out! It's the new link on the right.

Jay

Holiday Wish List

Happy Holy Days, everyone! May this week be full of relaxation, comfort, and joy.

Christmas is quiet around here. Tonight, I'll be cooking a crown roast of lamb and some easy vegetables for Chester and I, a decadent but simple feast. Tomorrow Jaime arrives and will spend Christmas day with Chester while I celebrate my lover's birthday with a hike and massage. First thing in the morning on the 25th and 26th we'll make an excursion to the emergency room to get Chester's daily blood thinner injection. We've been told to get there early, as we'll have to wait with the rest of the folks in the ER. Today the nurse giving Chester his injection quipped "Cancer sure doesn't take a holiday". . . but we are doing our best to take some extra time for rest and reflection.

Chester, Jaime and I have spent many hours over the past week trying to figure out how we can continue to make it all work. We've realized that caring for Chester has become a full-time job for all three of us. The support and generosity from all of you has been constant and much appreciated, and we now ask for a recommitment of support for the New Year. Please read on for Chester's (and the Healthy Chester Team's) Wish List for Assistance and Support.

1* Financial Support.
Chester's medical expenses continue to grow, and we are bracing ourselves for the coming cost of round 2 of chemotherapy. Your contributions are endlessly appreciated and much needed. Please keep those checks coming! Even if it seems like a modest donation, please know that it is valued and welcomed.

2* Meals.
If you live locally, please consider joining us for dinner. After our long and busy days, having a meal with friends is a great source of relief and enjoyment. Home-cooked meals, take-out, or sushi runs are all most welcome! Please call or email Chester directly to set up a dinner date.

3* In-Home Assistance.
Chester needs ongoing companionship and assistance. Live-In Assistance includes a range of duties, including assisting Chester in getting dressed, driving to medical appointments, preparing meals and other household chores. Jaime and I have been serving in this role most of the time, joined by very welcome guests from out of town. We need help! If you would be interested in joining the core "Healthy Chester Team" and are able to commit to spending several days and nights living with Chester, please be in touch. Locals and Out-of-Towners alike are welcome, just please be able to devote several consecutive days. Living with Chester is an amazing experience; being immersed in exquisite presence, witnessing his daily rehabilitation, and sharing the rare intimacy of caretaking. Please consider offering some of your time and energy to support Chester's daily living.

4* Logistical Assistance.
We have begun the process of applying for Social Security Disability Income, Medical, and other public assistance programs. This is a fairly simple but detail-oriented process, but with the possibility of securing much-needed financial help. We do not have the time or focus right now to get through the paperwork, and are seeking someone who could spearhead that initiative. This would involve gathering Chester's paperwork, filling out applications, visiting local offices and being persistent with the application process. Are you able to be our Admin Angel?

5* Energy, Prayers, and LOVE!
Please continue sending all of your healing and loving energy to Chester. We feel it pouring in, and are grateful for the unwavering support from all of you. As the New Year turns, please consider a moment of rededication. Reflect again on the teaching and transformative friendship that Chester offered you over the years, and allow that to be a well-spring of energy for you.


You can always be in touch with Chester directly at dragonfly@surfbest.net. I (Chrys) can be reached at openhands@mac.com. The phone number of the loft is 510.658.8538. Please keep the support and friendship flowing. If you have offered assistance in the past and no one followed through with you, please offer again! We got many offers of meals and companionship while Chester was in the hospital, and I know I personally was not always able to keep up with it all. Please renew your offer, and know that you are very much appreciated. We are ALL the "Healthy Chester Team". We have ALL been part of this incredible process, and we will continue to be connected into the new year.

If _you_ have any "wishes" for _us_, please let me know. Is there anything you are curious about that hasn't been covered in the blog? Anything you want pictures of in particular? Other wishes? Be in touch!

With Love and Gratitude,

Chrys,
on behalf of Chester Mainard and the entire Healthy Chester Team

A Walk With Chester

At 8:45, Chester was unbuckled in his chair and ready to walk. His physical therapist was late, but his session began on time. We did a warm-up lap around the kitchen table. Doreen arrived and Chester was off! I follow behind with his wheelchair so he can rest when he needs to. Another lap around the table and then Chester donned his walking scarf and spent the next full hour walking the courtyard. On the way back to the door, he walked over to the stairs instead. After resting at the bottom of the stairs, Doreen asks if he wants to try a few stairs. He thinks, taps his finger to his bottom lip, and sighs "i'll try two or three". He breathes, begins climbing, and walks up all 18 steps. Even. Steady. Confidently. Gracefully, even!

New Tricks

After a restful and pleasurable birthday weekend, I am back home with Chester and it was a wonderful relief to see him again after three days. Jaime took beautiful care of Chester, and by all reports it was a good weekend full of deep sleep and gaining strength.

When I say that every day is a learning experience around here, I mean it most literally. We are, as a team, constantly figuring out new ways of doing the most mundane tasks, systems and rituals to create rythym within the hectic pace, and theraputic techniques and technologies to assist Chester's body in healing and comfort. It is a constant process, both in refining what is working and being inventive to meet new challenges and symptoms as they arise.

Over the weekend, Chester got a new theraputic technique from his Occupational Therapist, June. Once a day, he submerges his right hand into ice cold water for five sequential periods of about three seconds each. This simple cold water plunge has helped reduce the swelling in his hand significantly in the last few days. His right leg and arm are now just about "normal" size, which is a big victory after three months of chronic swelling.

It is just past 8 pm and Chester is snoring away. We will be up early tomorrow for a 8:45 physical therapy session and then right into speech therapy at 10:15. I am very grateful for the rehabilitation professionals who continue to offer Chester so much support, information, and guidance as he constantly meets his own resilient edge of resistence, every day discovering what he is capable of and what are his challenges. May we all have such strong support and competent care as we meet our own edges in life.

Weeping

Dear Ones,

Last night Chester slept deep and well. We woke up often, but he quickly fell back asleep once pillows were in place and his snoring was a rich symphony of rest. Last night was the first night of sleeping with the sutures out, so I was very aware of his head wound. I checked often during the night, and there was no signs of bleeding or weeping from his the six inch, horseshoe shaped wound. This morning we were both delighted that there was no ooze on his pillow case. There were two small spots of blood on his forehead, and in the morning light I traced them up to a small site of bleeding, a point where one of the sutures had been removed. Feeling optimistic about his head staying closed up and healing more fully this time.

This morning during his Physical Therapy session, where he walked outside and climbed 18 stairs, his head began the slightest weeping, a clear drop from one point at the top of his wound. Doreen and Chester decided to end the session early and Chester got in bed to rest. He propped himself up with a mountain of pillows and the cozy husband pillow, elevated his legs, and within minutes was snoring. I called Dr. Tang's office and reported the weeping. I called Chester's Speech Therapist and consulted with her, agreeing to reschedule for a time Chester was more able to talk with her.

As he slept, I periodically checked on his head. The weeping continued, and increased to a pool of pale yellow ooze. I donned my gloves and caught the run-off with sterile gauze, breathing with Chester and praying that the wound would settle down and rest with Chester. As he napped, the oozing stopped. I swept the floors, cleaned the bathroom and organized the closet. Chester brings out the Virgo in me- I want everything clean for him, everything just-so to ease his movement and activity, a place for everything where he can reach it easily and readily. My mother would be very proud of the housekeeping that flows when it is in service.

Chester woke up at 12:30, just as Jaime was pulling in. I was packed and ready to leave Chester, and I was so sad to be leaving him. I felt my wings flutter at the prospect of three days away. Tomorrow is my 25th birthday, so Jaime is Chester's primary companion for the weekend while I rest at home and receive touch from 25 (or more for good luck?) friends and lovers. I sat with Chester and cried as Jaime and Auggie moved in for the weekend. Chester's head began weeping again as he sat up and transferred to his chair. It had calmed down and stayed dry even as Chester transferred twice to go to the bathroom. By the time I left it was stable and calm. Dr. Tang was due to call any minute. With deep breaths, I rolled out the door and Jaime drove me to BART. I did deep pelvic breathing the whole way home, 25 minutes under the bay. Arrived home for the first time in 10 days and wept, crashing onto my bed and being held by my roomates as I sobbed. A huge mix of missing Chester, unguarded relxation, the pleasures of arriving to a beloved home, the split of half of my presence still in the East Bay. Breathing.

I just got off the phone with Jaime. Chester's head has totally settled down and he is feeling good, all-things-considered (We laugh in bewilderment everytime someone asks "and how are you today?"). They had talked to Dr. Tang and are being careful with Chester's beautiful head but aren't too worried about the brief weeping. Weeping, clearly, is part of healing. A lesson for us all. They rescheduled Occupational Therapy for tomorrow. Marilyn is joining them soon for Sushi before she flies to Hawaii tomorrow for work. (I dream of bringing Chester entire armfuls of fish, still flapping fresh from the ocean.) Jaime assured me that all is well. The "Healthy Chester" team, Chester included, has a policy of transparency. I know that Jaime would tell me if I needed to be concerned. I hear Chester breathing in the background, and I am assured.

So here I am in San Francisco, listening to Loreena McKennitt, full volume, and settling into home. Breathing into what it feels like to _not_ be with Chester. Still feeling so full of his presence, as I know so many of you feel. I know that even folks who have not seen him in years, or who live literaly on the other side of the planet, or who were only in class with him just that once, or so many other folks (some who have never met him?) are Feeling Him so deeply these days. So many people holding him in their prayers, thoughts, hearts, guts, loins, and hands. A truly astonishing amount of presence flowing between so many people all over the world. Breathe into it, my friends, it is truly awe-some.

I'll be back with Chester on Monday, hopefully with huge energy generated on my birthday, lots of sleep and rest, fresh laundry and a fixed digital camera (!!!). I hope to have pictures to post for you all by early next week. Until then, keep holding Chester close. Enjoy each breath and know that you are also held in reverence and care. My birthday wishes are for us all. . . .

Chrys

Early to Bed, Often to Rise. . .

It is just before 8 pm here in Oakland, and Chester has just gotten in bed. He resisted going to sleep so early for a moment, but the fatigue was evident and I coaxed him into allowing himself the rest. I have just finished entering the 30-some new appointments we made today in the calendar, and will be doing a few tasks around the apartment before I myself join Chester in rest. Our nights are long and fragmented. Chester wakes up at least five or six times each night, and I am awake within moments to assist him at his bedside. Nighttime movement is particularly challenging, especially transferring out of bed to use the bathroom, so I am vigilant about waking up to spot him so there is less risk of falling. Many times we wake up, however, to simply get comfortable again. I am more aware than ever of how often our bodies need to move while sleeping to stay comfortable. Most of us do this without even surfacing from sleep. For Chester (and others), it is more of a process. I have learned how to arrange his limbs and pillows just-so for maximum comfort, and am happy to wake up and help him get settled, fall back asleep for an hour or two, then repeat. My dreams have become quick and frenzied, as I move in and out of sleep so frequently. Chester's dreams have been highly effected by the steroid he is on, and he looks forward to more peaceful dreaming to return as he tapers off of the medication.

Today was a full day of doctors. Dr. Tang removed the last set of sutures and prescribed a two week course of antibiotics to prevent any further infection. He is a bit concerned about the possibility of the wound reopening, so we are advised to be very cautious as it continues to heal. We want to do everything possible to prevent the need for another head-opening procedure.

Dr. Hartman, the medical oncologist that works with Chester on his chemotherapy treatment, also met with us today for a progress report and to monitor the blood clots in Chester's arm. Chester will be waiting another two weeks before starting the next round of intense chemotherapy to assure that the antibiotics have run their course. He should be starting again on chemotherapy right around the new year. Chester will also be continuing on a daily blood thinner injection for three more weeks to prevent more blood clots from forming. This means daily trips to the hospital to receive the injection. A peculiar daily task, as it takes half an hour to get in the car and to the hospital, thirty seconds to get the shot, and then another half hour to get back home. If nothing else, this daily trip allows Chester an excursion out of the house and we get to taste the fresh air, enjoy the afternoon light, and cruise around together for awhile. Today on the way home we stopped by Joe Kramer's to visit with our colleagues and pick up six pairs of pants that Jane had graciously fixed with elastic waistbands.

Such is the nature of our days: a full and busy schedule of medical and rehabilitation appointments. Dr Tang asked today "So how is the rest of your life going?" and Chester and I looked at each other in amusement and sadness both. On the surface, it seems that the medical schedule is all-consuming and does not allow for any other "life" to happen. But beneath that, there is a richness that begs to be acknowledged and celebrated. The simple pleasures, small moments of intimacy and connection with friends, and the unexpected humor of disability are all abundant in our days. It is one of my goals to maximize the pleasures and moments of joy for Chester, to find spaciousness amongst the hectic pace, to feel the rest of Life still in full swing. Last night as we were preparing for a shave and shower, we spontaneously started dancing together to Marvin Gaye's "Sexual Healing". We cleared the floor and danced together, Chester spinning gracefully around in his chair and allowing our hands and breath to propel us together in dance. Tonight, as the tilapia and broccoli were cooking, we went outside and gazed at the near-full moon together. Small moments of pleasure, but fuel for our busy days. The emails, letters, cards, and gifts that continue to arrive daily are also a big source of enjoyment, as Chester is constantly reminded of how many people care for him so deeply.

May all of Your days be filled with pleasures, both simple and profound. And please join me and many others in assisting Chester in accessing the maximum amount of beauty, love, breath and enjoyment as possible during these challenging days.

Good night, and Rest Easy.

Morning Light

This morning I was awake at daybreak. After assisting Chester with turning over in bed and getting comfortable with his mountain of pillows (tossing and turning is now a two person dance!), I could not fall back asleep. I decided to dress and take a long walk, stretching out my body and getting my circulation going in preparation for another busy day. I sat outside on a bench and watched the morning light slowly rise, weeping at the simple beauty of being alive. This is the kind of state that living with Chester arouses in me- sheer awe, generous emotional outpouring, and a huge gratitude for every dawn and dusk that we share.

After our morning scones and juice, we are now up and rolling. Chester's Physical Therapist is due at 9 am, followed by Speech Therapy at 11 am, followed by a hospital visit at 2 pm.

Yesterday we had a follow-up visit to check on the blood clots. We were heartened to learn that the location of the blood clots do not pose a great risk of the clots travelling to Chester's lungs. Chester is going to continue on the blood thinner to prevent further clots and we will get another assessment tomorrow with Dr. Hartman. Also Wednesday is a visit with Dr. Tang, who will look at Chester's head wound and hopefully feel that the stiches are ready to come out. Chester's head has been healing very beautifully, both the surgical wound as well as the skin burns from radiation.

And so it continues. We will be posting more soon. In the meantime, remember that you can email Chester directly at his regular email account. He loves to hear from his friends!

JE Day 6: Goodbye & Return Home

I'm getting on my first flight home as I start this blog entry on my PDA. I'm listening to Loreena McKennitt, which is a favorite of Chester's, and which he gave me this morning.

Chester has a chest cold. Intermittently last night he would saw off a branch, then stop and cough.

I slept like a rock last night. The only remembrance I have of any dreams is a fragment. Chester and I are outside somewhere. I have some holy beads around my neck. We begin ascending a stairway--I see not where it leads. Chester warns me that it is not the proper time to be wearing the beads. As though he would get in trouble. I take them off stealthfully. We continue to ascend. The dream fades.

Oddly enough, I remembered that only now--I haven't even discussed it with Chester yet. (THAT'S the level of customer service we offer here on the Healthy Chester blog, gentle reader.)

Last night Chester said he wanted to get up at 7 or 7:30. I set the alarm for 7:15. I slept like a stone until 7, then heard him moving around. He was going to the bathroom. He looked as tired as I felt, and said he wanted to sleep for another hour, so I set the alarm and lied down again. Well, he was doing more coughing than snoring, so five minutes later I went out and asked if he wanted to get up. Yes.

I did the now-familiar routine of turning on the lights and putting the kettle on to boil. Well, I know I was tired--I put it on the stove after rinsing it out but still empty! Luckily I looked at it a minute later and realized my error. I had to wait a few minutes for it to cool down before I could fill it and try again.

I quickly moved through my preparations for showering and packing. I was half done packing when I just stopped. I realized I wanted to say my goodbyes before others arrived. I pulled up a chair next to Chester's. It's a bit challenging to give someone a close hug in a wheelchair, but we figured it out. We talked about highlights of the week, my preliminary plans for my next visit, and some other things. A tearful hug sealed it.

Our timing was perfect, as Gil and JD arrived just then. Chrys arrived shortly thereafter, and I filled her in on a few things that had changed during the week. I said goodbye to Chrys and thanked her for her efforts in giving care to Chester. One last tearful hug and a kiss to Chester, and I walked out of the apartment. Big breath.

A pleasant ride to the airport with Gil and JD and then another goodbye. I thought I'd be a blithering mess, yet that's not exactly the case (yet). Part of it was just dealing with the logistics of the airport. I've also had a very animated conversation with my seat neighbor on the plane (longer than I wanted, and she didn’t catch my cues… oh well). I'm now once again listening to Loreena McKennett as I write.

…

I napped on the plane, got something to eat in Detroit (yeah, I had to overshoot Madison to get home), and called my friend Barb there. I can tell I’m probably going to cry every time I talk about this for the next week or so. So be it.

I’m back home now and said hello to my cats; one is on my lap and one is on the desk. They hover around me when I get back from a trip. My heart was full while in California, and now I realized how much I missed them. They are also great teachers of mine, and it pains me to be away from them (I know, another gay man and his cats…).

By the way, it occurred to me the times on my blog entries might be a bit confusing – the timestamps are Central Time, and I was on Pacific Time when writing them—two hours difference.

Thus ends my trip. I’m happy to be home, and sad to have left California. I hope to have some time soon to talk about some of the things I said I’d describe later. However, it may take a short while as I get caught up in my life back home.

Gentle reader, please drop Chester a note to let him know you are thinking of him. This is my request, not his. It need be nothing big or fancy—just a ‘hi.’ I would also appreciate hearing from some of you, as I like to get a sense for the caring that surrounds our Chester. Go to the forum and send me a private note or send an email to jay at healthy chester dot com.

Thanks!

Jay

P.S: oh, one note: I'm going to be putting pictures and other treats into the blog entries below where they fit. When I do, I'll post a new entry saying they're there. Stay tuned!

JE Day 6: Slow & Starting Goodbyes

Ah the weekend--thank God.

We got up at 7:30 or something. Chester had another good night's sleep on the new body pillows. Breakfast, dress. I now have the knack for putting on the compression socks. This morning I put a piece of gauze behind his left knee. It worked very well - no soreness tonight.

Chester did a walking lap around the apartment. He felt pretty strong.

We went to Alta Bates to get the Lovenox shot. It was nice to not have to wait - simply walk into the treatment center, blood pressure/temperature, shot and go. However, the shot hurt today. The woman did something no one had done before: she squeezed a portion of the skin before putting the needle in. Chester and I compared notes later and decided it was the WRONG thing to do - just put the damn needle in. ;-)

On the way back we went to Johnston Medical Supplies to look at commodes - the one he has isn't comfortable - it's not deep enough front to back. Inconclusive research, and the folks there are so friendly and helpful.

We got back and June came for the OT appointment. I saw immediately why Chester likes her so much--she walked in, grabbed his hand and held it while saying hello. It was pleasantly surprising to see such caring. They caught up a bit on the medical situation, then did some walking. June also talked about strategies for getting Chester back on the horse in terms of walking to the bathroom, etc. We disccussed commodes and a new grab bar for the bathroom. June is very knowledgeable.

Gil and JD arrived with more PB&PJJ (peanut butter and plum jerry jam - long story) sandwiches and stayed to visit. Gil graciously offered to drive me to the airport tomorrow morning (tomorrow morning? Where the hell did this week go?). I asked whether he had kleenex in the car--the weepy old woman is gonna do her thing, I just know it.

Jaime was going to come over, but he had a bad sinus headache, so was staying in bed for a while. Chester and I had lunch then took a nice nap together. It was a wonderful time to just be together. Marilyn called after an hour or two, and I must have been deeply asleep, as it took three rings for me to figure out what the hell that sound was, then dug for the phone and answered it. I won't be seeing her again before I leave - rats.

Chester and I got up from the nap, and walked out to get the mail. He asked me to bring the chair along, and he did indeed need it by the time we got to the mailboxes. However, after the long week and being near the end of the day, his progress was pretty good.

We talked for a while, then ordered dinner from Kasuga (if you live in the bay area, like sushi and haven't eaten there, you are totally missing out). I left to go pick it up and cried about the first half of the way there. Oh man am I going to be a blithering, sloppy mess on the way home tomorrow. I had a nice conversation with the owner of Kasuga, then returned here. We ate and talked some more, then had a good cry together. A hard one, actually. Jaime came by with a new bar for the bathroom - it's a bit different than June suggested, so they'll have to figure it out. We spent some time looking at toilets online (boy, you get the nitty gritter from Healthy Chester Central, doncha?), then Jaime left - he still wasn't at 100%.

Chester and I had some pecan pie with Vanilla Häagen-Dazs ice cream, then had a silent toast with Frangelico on the rocks. We were both ready for bed. Mountain suitably arranged on the bed. Chester was so tired he wasn't sure he'd transfer ok (he did). Another brief and important conversation, a few more tears, then a kiss goodnight.

I'm so tired I don't even know what to say about the poor wood in the other room - they just don't know when to give up. Apparently there will be no end of it. What's the legend about the sun and moon forever chasing each other through the sky? Kinda like that.

Right now I'm feeling a whole lotta tired, a settled sort of sadness, and most of all greatly enriched. This week has been even more rewarding then I imagined it could be - how that's possible I'm not quite sure. I get one more morning ritual with Chester in the morning, then there's nothing left but packing, a goodbye and returning home. Normally I can look ahead to the next thing - especially returning home - and right now I can only be here, now.

JE Day 5: Relaxation & Being With

Today was the day I now realize I was waiting for.

While the alarm was set for 8:30, Chester was awake by 7:40 or so, so I got up and we got up. We had a really wonderful melon for the first course of breakfast, then the normal course of scone porridge. I had corn and cherry this morning, by God, and it is good.

Chester wanted a shower today. He first wanted to install the diverter, so that instead of just the sprayer, there would be a shower head and the sprayer, and both bathers could be comfortable. I knew where the diverter was, yet we didn't know where the original showerhead was. Hm. Chester knew he'd seen it. We looked all over, then while I was looking out in the main room, he found it in the bottom drawer of the bathroom. Yes, he had seen it. I got it installed with Chester's supervision (oh THAT'S how much Teflon tape yer supposed to use!); however there was only 25 minutes until our call at nine, and we decided we didn't want to be rushed. We would make the call half naked. ;-)

I typed an email response Chester dictated, then we had the conference call for the Rehabilitation Without Walls team; this included Jenny, the team leader (I assume) and speech therapist; Doreen, the physical therapist; and June, the occupational therapist (whom I haven't met yet - will tomorrow), and Chrys, Chester, and me. The call lasted ~40 minutes; the bottom line is that Chester had made great gains before the last setback, and after the last stay in the hospital is near back where he started. However, everyone is hopeful he will make the same progress he did and then continue. One challenge is that it is unclear whether the insurance company will pay for more rehab--Jenny will be looking into that with them. Please see the insurance company and the woman who is our contact as being kind and compassionate, giving Chester what he needs. I'm not even going to make a joke--please simply see this.

I checked in with Chester after the call. He agreed the assessments were accurate and hopeful.

[As I type this, I hear a now-familiar sound from beyond the wall behind me. It sounds as though the trees Chester is sawing down are fighting back. Unfortunately for them, he will win; I believe it to be preordained.]

Next it was time for our shower. Chester has a shower seat that extends from the tub out onto the floor. Transfer to the seat, put legs into the tub, scoot over. There's a back on it so that he can rest comfortably. The diverter worked exceedingly well--I turned it about half-way, so that we were both comfortable. The shower was a wonderful, relaxing time - we took about an hour. I washed Chester thoroughly (all but his head - we wash the top of his head carefully during the day to protect the sutures and guard from infection). It was a fine dance with an interplay of limbs, balance and pressure. It was a really wonderful way to connect, and a level of connection we hadn't had yet, even with the intimacy of sharing food, un/dressing, bathroom support, holding his hand during infusions and the tears we'd shared so far. Then I washed myself and had him wash my back. One warning if you ever bathe this way, as the stander: when bending down, pay attention to where the pin on the spout is in relation to your ass. At one point I leaned down and punched it with my right glute, dropping the water from the shower to the lower spout. Four inches to the left and, well, let's just say I would be going steady with Chester's shower, and would have to clear it with my boyfriend, Kevin.

And of course he was going to teach me something new. I started drying myself off - you can imagine how I was doing it. He stopped me. "No rubbing. Still. Pat dry." So he showed me the dance of wrapping the towel here, rubbing lightly on the towel, then moving the towel and doing it again, then slowly dragging the towel over this part, etc. Very nice.

Next it was time to put on the new pressure socks. As you might imagine, they are tight - between 30 and 40 mmHg (mm Mercury), if that means anything to you. The woman at the store yesterday showed us the best way to do it. Thank God--it would be almost a Herculean task otherwise. Some adjustment will need to be made at the inner bend of the knee and perhaps the upper bend of the ankle--the fabric was bunching regardless of how much I stretched it. Tomorrow I will try gauze there per the suggestion. We then finished dressing him, then I dressed.

I then cleaned his head with gauze and a 50/50 HO/H2O blend. I began to use a bit more pressure (periodically checking with Chester) and A LOT of the radiation-burned skin flaked off, leaving slightly pink, healthy look skin underneath. ALL of it came off his forehead, and most in the right-front quadrant. Chester concurred that Chrys will be jealous (sorry Chrys). When I held up the mirror he was impressed with the change. He looks great. This on top of the nice trim yesterday and he looks like a new man. It felt great to me to see this change.

Jaime dropped by so we went to lunch at Mel's. Wow, these two are regulars. After this Jaime drove us up to Forest Hill where Chester lived before his surgery.

[Good god--it sounds like the trees are giving Chester a run for his money! I'd go out to ensure he's ok, but with the sawdust and wood chips flying under the door, I don't dare.]

I've never gone up in the hills above Berkeley before, although I've admired them on all previous visits. Fun driving through all the curves. The view of the bay was gorgeous. We got to the house; Chester chose to remain in the house while Jaime gave me the tour. I knew it was coming, and there it was: a good hard cry upon seeing Chester's things in the apartment. Much of it was familiar to me even though I hadn't seen it since he lived in Concord when I was here four years ago. Jaime gave me great support. We then went into Chester's massage space--a temple, he later called it. Another big wave.

Yeah, so I surrender to the fact that my blog entries are about me as well with this side story. When I was in Nepal after college in 1990 my friend Mary and I were walking through the streets on the edge of Khattmandu when all of a sudden I simply stopped. I turned toward this little open store, walked toward it and picked up this little egg-shaped black thing. Weirdest damn thing I ever experienced--I simply walked toward it and placed my hand on it without thinking. I don't know what compelled me or why I was attracted to it. I knew it was for Chester. The gentleman explained a bit of what it was; I don't remember if I got it or not. It didn't matter; it was for Chester. I carried it for 3-1/2 months until I got home. I gave it to Chester at our next meeting. I would normally say he looked at me with surprise, but I can't because he didn't. He looked at me with some kind of gravity or appreciation and explained that it was a lingam of Shiva, a phallus. I had brought him something he valued, and was very gratified for it.

I saw that lingam today sitting on one of the alters on a shelf by the door. I recognized it immediately, and got another wave. I'm more open right now than I've ever been. If you know Chester you know someone who played a big part in that, so I won't bore you with more about it.

We dropped Jaime at his car; the rest of the day was my time with Chester alone. We went to Alta Bates for today's Lovenox shot. We got our vibrator pager thingie and sat down in the waiting room. During our conversation I mentioned to Chester that I was getting good at quick hard cries and BOOM big wave. Totally unexpected, and Chester came with it. Have I mentioned the tissues yet? Hmmm. a search tells me no. I went to the gentleman at the desk and asked for tissues. This is the third time I've done this. They don't have tissues sitting out--if they are needed, a small box is give with the instruction, "you can keep these." I'm guessing some sort of sanitation thing in the waiting room of a cancer treatment center. So this was our third box. The guy kinda scrambled for the box - I think we've cleaned him out at his desk this week. I joked with Chester we should bring our own. "Or start a collection," he suggested. That we have - there are now three boxes in his car.

The nice woman in the treatment room (I keep forgetting to look at her tag) gave Chester his shot. Each shot becomes a bruise: a shot always bruises to begin with, but the Lovenox causes more bruising because it thins the blood in the area. The bruises are about 2 or 3" in diameter. She remarked to Chester that she hoped he wasn't going to associate her with the bruises. I chimed in that he associates the needle with the bruises; her he just likes. Chester asked to be weighed and she helped him with that. Hmm. He's gained some weight (it would be indelicate of me to say any more than this. There's transparency in this blog, then there's just plain uncivilized behavior). This can be chalked up to the Dexamethasone (hunger goes way up - same thing happened to my cat when he took it years ago), as well as our devouring entire schools of fish this week. I'm a bit afraid to step on the scale when I get home...

We stopped to get some ice cream on the way home, and I bought the last three corn cherry scones at the Arizmendi Bakery. We got back and after a few minutes Chester said with surprise and resignation, "I need to lay down." It's been a long week, and we are both pretty crapped out. However, my body isn't recovering from several assaults like his.

I went out to the courtyard to make a call. Boy this place is full of yuppies - I was one of three people on cell phones--cracked me up. I made my regularly scheduled call with my friend Patricia and cried through the first half of it. (Am I coming across as a weepy old woman? [No offense to you weepy old women out there.]) I then returned a call to my sister Jennifer, then returned to the apartment. Chester had already gotten himself up. We weren't really hungry yet. We chatted for a while, then Chester resigned again to being exhausted and stated he wanted to go to bed. The pecan pie and vanilla ice cream would go uneaten tonight.

I laid down with him and we talked some, mostly just being together. After a while he suddenly stated he needed to sit up. His breathing felt a bit congested. I just sat with him, although my antenna was up and my concern was headed that direction too. I asked what was happening and got an "I don't know," which is a response he gives from time to time, especially when he's tired or stressed. I took his temperature--fine. I rearranged the mountain of pillows so that he was leaning more upright against pillows against the wall, and his leg's were also elevated. I then joined him again and we had the talk that I referred to in the first line of this entry. This portion is private--suffice it to say we continued some discussions we've had for 16 years and found greater clarity. Lots of crying (especially by your weepy old woman). There are still tissues all over the floor out there; at this point in my life tears are badges of success. We then just were together and ended up dozing for probably an hour. He awoke to go to the bathroom and was then truly ready for bed. I once again moved the mountains for Mohammed and sent him off to the next battle of The Great Woodland War. [Speaking of which, someone just put high octane fuel in the chainsaw or whatever the hell it is he's using. When will this carnage end?]

And now I sit doing this.

One note please: I made several decisions when I made this trip. One was that I was going to do a fair amount of blogging. I figure I can do anything for a week. Know that there is no way on God's green Earth that I could do this much blogging for more than a week. Until Chester regains more of his strength, thus lessening the need for all the "T's" (OT, PT, ST), giving him care is a 24/7 job. Make no mistake--when I sleep in this bed I do so with the door open. I wake up when he does and pay attention to whether he wants assistance. Hovering? From afar. I will ask if he wants assistance (I never use 'need'), and quite often he doesn't. I'm impressed with how he is able to maneuver his body and the pillows.

Anyway, the bottom line is: please don't expect this much blogging when I leave California. It's just not possible. I wanted to make sure no one thought I was setting any kind of a bar for the blog. Besides, I'm long-winded and like to hear myself talk. Others around here are more sensible.

Hmmm. It's after midnight again. That's it for the night. Tomorrow's my last full day. I know at least one good thing that will happen tomorrow. You may not be impressed by it, yet Chester is going to love it. I'll leave you hanging in suspense until then. Good night, gentle reader.

JE Day 4: A Bit Easier

Today pretty much HAD to be easier than yesterday; luckily, that was the case. We were very slovenly: got up at 7:30. Regular morning routine (I'll describe some of these things after I get home). We were both pretty tired and neither one of us was firing on all cylinders so we had a bit of miscommunication. A bit of frustration and worked through well and easily. Now I know what "sticky socks" means (socks with rubber bottoms for traction).

After breakfast we talked about my going to the Arizmendi bakery to get their amazing scones, especially the corn cherry (if you live in Oakland, they're not that good - if you live anywhere else, they are the best! Don't tell the locals - more competition). I figure I'll go get them during his PT. I'm standing there in my jammies and Chester says "Go quickly!" I stared at him, a bit confused. He's telling me to get the hell over there now? Uh, who died and made you queen? He saw my confusion; took a breath to add an important word: "They go quickly!" Ah, he wasn't being prescriptive, he was being descriptive. We laughed. So I went and got a dozen of them (about 2/3 of what was there - I was beginning to get looks).

That interchange is a bit descriptive of Chester's communication at this point. He's still working on the brain connection to the mouth, so leaves out some words or does other transmutations. Look at the word "statistics." If he doesn't concentrate, it comes out "stastistics." Tricky word, when you think about it.

Doreen came at 9 for PT. Chester wasn't as strong as on Tuesday, and with the grueling day we had yesterday, this was not a surprise. He still had a good workout. I worked on the computer, updating the schedule and making many phone calls for logistics, appointments, etc. Marilyn stopped by and we went outside for a chat. I had a good cry with her, and she gave me great support. We talked about logistics and plans.

Gil and JD dropped some sandwiches off. Chester had ST at 11. Chrys arrived. Marilyn came back with a new winged-back chair for Chester. (Are you getting that it was Grand Central here? It was, but now this seems quite normal.) Chrys and I had a nice chat. The day is clouding in my mind now... We are getting some systems in place for online calendars for the Healthy Chester team to coordinate, as well as a shared contact list, etc. There are a few more things I want to put in place, and it's a race against time. It literally still feels like Tuesday to me - it's gonna take a while to get back to my day-to-day life after this trip.

Chrys kindly warmed some of Gil's leftover cocque au vin for us, as well as the last of the wonderful homemade apple pie (I forgot who Chester said made it - THANKS!). Jaime dropped by with laundry just in time to see us off. Oh, he also dropped off the medicine to take care of the thrush that Chester has as a result of the chemo and/or radiation and/or steroids.

We went to Johnston Medical Supplies to get Chester fitted with compression socks. The kind he was wearing before are really for nighttime wear - they aren't tight enough. Terry, a wonderful older woman of Chinese descent, with a chipper, helpful air about her got him all set up. She told us everything we needed to know about compression socks, how to get them on, measurements, etc. We left knowing we got the best choice. I also picked up a liquid medicine delivery thingie, and only discovered it was made to look like an alligator when Chrys pointed it out. I should have gotten chester the eye patch - it would so have helped that "scare small children" look he's cultivating right now.

Marilyn called to say she got 4 body pillows that Chester wanted. Cool. We get lots done!

When I made that appointment I was told it would take 20 minutes. I added 10 on for buffer. Right. We were 15 minutes late for the Lovenox shot at Alta Bates, but it's not a biggie, since it's just a shot. We got some questions answered, primarily about the blood clots - is massage ok? (not on the arm) PT? (sure) etc. The level of service and competence at that place is just phenomenal. If I ever get sick I may move here (Leslie - I'm not asking for it!). My lesson for the day - add LOTS more buffer time for appointments when health care is involved. Hurry up and wait is the rule. Nay, it's the law.

We got home and did some straightening (if you will) before Joe and Jane stopped by for dinner. Chrys organized the sushi order, then she and Joe went to get it. Chester, Jane & I had a nice chat during that time. They brought back enough sushi to fit in a small dump truck. Have I mentioned that I've seen more sushi eaten this week than I have in probably the last six months? And Chester can put away enough to kill a horse. Am I mixing too many metaphors for you? Should I put them on the slow boat somewhere? Damn, another slipped out.

Joe took Chrys & Jane home. A bit of futzing with emails, etc., then we begin to figure out how to work with these big pillows. Marilyn was unable to get cases for them, so I put two regular ones on each - one on each end. Perfect. I acted as stunt double for Chester while the two of us figured out how these would work on the bed - the most important and fussiest part is figuring out how to get the legs elevated comfortably [I actually practiced having my right arm and leg be limp and moving them around. It sucks big time]. Great teamwork - we bounced it back and forth until we figured it out. How the hell did it get to be 10:30? It was just 9! We got ready and I helped Chester shave. I prettied up his mustache and goatee, too. Pretty dapper, if I may say. Doing this was a wonderful intimate time to spend with him. We were both pretty tired again so communication (on both sides) was a bit fuzzy. By this time looks and telepathy are completing many communications. It's odd that while I understood what he meant by a hand gesture and sound effect, I wouldn't be able to put it into words - I just understood what he meant. Does that make sense?

We got him undressed for bed. The new compression socks are AMAZING. His left (more useful) leg is pretty darn near normal. The right leg is a LOT better. Still some swelling, and so much better. Walking will be much easier, which will lead to more walking, which will lead to less swelling, etc. It's wonderful to have some things that cascade for the better. When we put the AFO (ankle brace) on this morning, two of my fingers fit in snugly. Tonight I could put most of my hand in by the calf, and four fingers in at the ankle - that should give you a sense for the improvement.

I heard Chester's snores before I even started this entry. Man, after midnight again - how did that happen? Oh well, we are REALLY going to be slovenly in the morning - we just need to be ready for a rehab team meeting at 9 am by telephone.

I am in this moment sitting here in awe of the people who surround Chester and are creating the container that is making it possible for him to have what is really a remarkable rehabilitation. I don't want to name names because there are too many and I don't want to leave anyone out - and I know I haven't met but a fraction of the larger team that supports him! The primary care folks you know because you've been hearing about them in here. As I look at each person it's a bit like watching a movie (a B-movie actually) where a team is made up of JUST the right people with JUST the right combinations of skills and attributes so that their strengths and weaknesses (hey, we all got 'em) match up in JUST the right way so that later in the movie the heart-rending music can have everyone in the theatre balling their eyes out while the montage happens of the training and health, etc., etc., etc. I think you get what I'm saying. And right after that amazed feeling comes a feeling of deep sadness for all the people in the world who do NOT have this type of network, who do NOT have this container so they CANNOT have an amazing rehabilitation. Would that one day everyone gets what they need. Hold that vision with me, huh?

OK, enough of my philosophizing and fantasizing. Off to sleep. Please keep the communications coming in. Chester is not able to respond to them all - literally too busy believe you me. Also, he's not tracking details/memory stuff at 100%. He opens and reads his own email - we don't help him with that. As has been described by others in here for months, his primary care team is taking care of most of the details/memory stuff so he can focus on recovery. Like right now he's focusing on sawing down another of those trees. I hope the foundation of this building is firmly seated and they screwed in all the screws tightly... As I said, he does read all of his own emails, and when there's time dictates responses to one of us (there has literally not been enough time for one response while I've been here). He has a one-handed keyboard on order, and that will take time to learn. I have no idea how proficient he'll be at it. And again, I hate to sound like the broken record (damned metaphors just won't quit), there isn't enough time for lots of communications from him. I'm being repetitive. Edit psychosis mixed with fatigue - my apologies.

OK, I'm shutting up now. Good night.

JE Day 3: Important News

This is brief. It is very late, it has been a very long day, and I should really just go to sleep.

Up at 6:15 to get to infusion at 8. Delay. Race across the bay bridge to wait at the next consultation appointment with Chrys & Jaime. Delay. Race back across to get to ultrasound to check Chester's arm due to the edema (swelling). Chester has two clots in his right arm - one above the elbow, another below the shoulder. This is significant.

We went to get the last vanco infusion at 4:30 and met with the Nurse Practitioner on the clots. Normal treatment for clots is blood thinner, which can be dangerous given the possibility of bleeding starting at the surgery site (which would be very bad). Solution: sub-therapeutic level of Lovenox (blood thinner related to Heparin) to balance risk of bleeding with danger from clots. One week course, daily shot. Shot will be given now at hospital, hope to be able to administer at home (easier than giving my cat subcutaneous fluids...). We will also focus on elevating the arm 3-4 times per day for 20-30 minutes each.

Late for dinner with Gil and JD, who graciously didn't mind and helped me catch up on a bit of house work (how does Chrys do it?). I helped Chester to bed at 10 or so, and had a very hard cry with him - I've felt it coming and there it was. I'm sad and angry this is happening to him. While he was with me, he didn't have the same level of emotion - he's already been dealing with this. Enough of me; back to him.

I updated the team's shared calendar and prepared all tasks to accomplish tomorrow - it's a big list. I'll have time while he has PT & ST (speech therapy). Hopefully I can nap somewhere in there.

Please focus diligently on Chester over the next week. These clots need to be moved out safely.
Thanks. Gnight.

JE Day 2: An Adventure

I wish I had lots of time to draft this entry. However, it's been a long, satisfying, exhausting day. This may be a bit terse. I hope later in the week to give you a bit more of a sense of 'a day in the life of Chester.'

I got up several times during the night to help Chester. It was a bit uncanny how a couple of times I woke up about a minute before I was needed. I guess it's not all that surprising - Chester and I are pretty connected.

We got him out of bed by 7:45, dressed, bathroom and then time for breakfast. There's a great bakery nearby where a friend of Chrys's works (or owns?). The scones are amazing - Chester makes a porridge by dissolving one or two in hot water. I figured, 'when in Rome,' and had the same breakfast myself. Wow are they good! Quite a satisfying breakfast, too.

Doreen, the physical therapist, came by at 9. Yesterday Chester took one lap around the kitchen table and had had enough. This morning he walked outside, up a full flight of stairs, back down, around the common area outside and back in! That's walking for 1/2 hour! Even with a couple of minute-long breaks, the improvement from yesterday is marked, even to someone as unfamiliar with his progress as I. Then they got on the massage table and did stretching and strength exercises. It was a great workout. Doreen is really positive and responsive to Chester. She told him he would be getting his dorsal flexion back in his right leg (which would help him walk even better). He is quite heartened by that.

[I got some really great pictures of Chester walking and doing the stairs, and I'm sorry I don't have time to process them now. I hope to some time this week, and will let you know to come back to THIS post to see them.]

Next came his speech therapist (forgive me, I can't think of her name now). I took a nap during their session (was it 1.5 hrs or 2?) and only heard the first and last parts of it. They talked about animal totems. I'm not sure whether to be amazed with Berkeley and the surrounding area or the people Chester attracts to himself or both.

Next we had lunch, which consisted of a wonderful squash soup from Joe Kramer and Chester devoured the rest of Chrys's salmon. I had some turkey & stuffing. Then apple pie (Chester had 1.5 helpings).

We packed up and went to Alta Bates to see Dr. Champion. Talk about a Dikensian name - she certainly is a champion for him. I took an instant liking to her. She talked about the MRI results (nothing new from what was posted previously). She was concerned about the edema (swelling) in his right hand. She was concerned it was due to the PICC line in his right arm. The PICC line is an intravenous line put in the arm that extends all the way to the great artery near the heart. This is what was used to give him the antibiotic for the staff infection for the past two weeks.

She had a nurse come in to consult, since PICC lines aren't her expertise. Nurse Houlston didn't like the looks of it, so we went off to see Dr. Hartman. We were coming up on the time for Chester's next dose (3:49 pm). He was frustrated with the wait and asked me to get him hooked up and start it. I did, right there in the waiting room, except the pump gave an error saying it was occluded - beats the hell outa me - I followed the instructions and was able to expel liquid from it. It likely worked out for the best though.

We got in to see Dr. Hartman - a very positive woman who also clearly cares about Chester. I'm impressed that most of the folks we've seen are patient enough to wait for Chester to find the words and get them out without giving suggestions. One would expect this of these professionals, yet I could imagine there are plenty of docs and nurses who wouldn't be so aware. Jerry (nurse) worked with Dr. Hartman to get Chester into the cancer treatment ward right away in order to have the PICC line removed. With the swelling of his hand there was a concern there could be some blockage, and it had to come out. She assured Chester he could wait five HOURS for the vanco and it would be just fine. I made a point of finding this out, so that Chester could be less concerned about this. I certainly understand his desire to not mess with a staff infection, and time was truly not a concern. She did such a great job of being with his frustration and sadness; I was, again, impressed.

We got into a room in the cancer treatment center and Chester had to pee NOW. It was quite a treat, as the narrow bathroom had bars on the walls on either side of the toilet, and while Chester is adept at this, the bars made it 10x easier. He looks forward even more to having the bar installed in his bathroom.

After he was in the bed, Rosie, his nurse, came in. Instantly the room was filled with an energy that communicated, "This is a piece of cake. It's handled. We'll have this done in a jiffy." Talk about competence - she's really great. She hooked up a new IV in Chester's left arm, and while talking, pulled the PICC line out of his arm before he even knew she was done. Just superb. While the vanco given by the PICC line takes an hour for the pump to infuse, the protocol they have for a peripheral vein (the arm) lasts two hours. It started at 5 pm, so we weren't gettin' out of there 'til 7. Chester was a bit frustrated, and then we both had a brief cry while I held his hand. It was very cleansing. Chrys, Seth & Jaime were supposed to come over for dinner at 6:30. I called Chrys who called Jaime. I called Marilyn and Jaime. Chrys called and emailed Seth... You get the picture - all God's children was calling all God's children. I still haven't found out if Seth got the message, so I called again tonight to apologize for any inconvenience.

We then relaxed into waiting for the infusion to be done, and simple enjoyed talking and holding hands. I credit Drs. Champion and Hartman and our nurses, Jerry & Rosie for turning what could have been a really unpleasant experience into what we reframed it as: "An Adventure."

Chrys was concerned to hear about this development. She asked if Chester wanted her to come down there. I could hear the concern in her voice. Chester asked me to tell her no - it wasn't necessary. Chrys has worked so hard, being the primary caregiver to Chester. It's a bit tough for me to tell her "Don't worry, I've got it handled." While I definitely believe that to be the case, it makes so much sense she'd have such a feeling of ownership to tend to him with a turn of events like this. I assured her that Chester had a mother sow with him (that's me - Chester taught me years ago that the mother sow is probably the most protective mother in the animal kingdom), and that she should relax and enjoy her week off.

I was glad I was here to support Chester today. And the point at which we had our cry together I popped into the sadness I have for this dear friend of mine going through this challenging and sometimes painful experience. Much of the time I am peaceful with Chester and his experience, and in that moment it just sucked and I didn't want it to be happening to him.

Rosie came in and talked to Chester while she got him unhooked and wrapped the IV site to protect it until our visits tomorrow (he needs two more infusions: 8 am and 4:30 pm Wednesday). Chester noticed her pendant, which she explained is a Gaelic bird goddess. Again with the animal totems! Fascinating. Rosie informed us it was too late to schedule the ultrasound that Chester needs tomorrow just to make sure there are no clots from the PICC line. We'll have to do that in the morning. Holy crap, tomorrow is going to be a full day. I just remembered we need to pack snacks - not sure how that's going to work now... Oh well, I'm sure we'll figure it out.

Jaime was kind enough to join us for dinner and bring the sushi to feed us. We ate a huge amount of it, and Chester definitely put away the most - while he hasn't enjoyed salmon much before, he is currently craving every part of the animal, including the skin. We had a nice dinner, then talked about coordinating information, etc. Chester took another walk around the kitchen, and Jaime was kind enough to do the dishes while we did the bathroom routine.

I asked Chester earlier in the day if he'd thought about trying an electric toothbrush. He hadn't and was interested. I mentioned it to Marilyn who left an extra one she had when she stopped by earlier. Chester LOVES it. While he doesn't have much feeling on the right side of the body (he's calling himself a hemiplegic), he said he could feel the stimulation of the brushing, and was very excited about it. I asked if we should try the brush on his arm and leg. He looked at me, both flatly and with a small smile, and said no.

We sat and talked for a while, then did the nighttime routine. I hope to have more time to describe more of these things to you, and not tonight. He's once again sawing down another tree beyond the wall behind me. We were both exhausted and quite satisfied with a very full day. I've been calling this week 'vacation,' and while It's true I've vacated Wisconsin (and thank God, since it was -2°F when I left), this is not a "sit by the pool and relax drinking pina colatas" vacation. And I would rather be nowhere else on the planet.

JE Day 1

Greetings from sunny California!

Today begins my first of seven days here with Chester. It started early - getting up at 5 am Central Time (that's 3 am PT for those of you keeping track at home) to get on a 6:50 am flight. Apart from some sleeping and reading, I spent some time being thoughtful and preparing myself for my visit. My focus was to be curious about what I would experience, as well as a strong decision to do my best to blend in with the schedule(s) going on here. These folks have been doing this for some time, and while I may make a suggestion here and there, basically I'm going to shut up and do as I'm told/asked. ;-) Believe me - it's good for me.

Marilyn picked me up at SFO and whisked me Healthy Chester Central, aka Chester's apartment. I found a very pleasing building with bright colors, which only continued entering Chester's apartment. Nice main, multi-function room (bedroom, living room, office, kitchen & dining room) as well as 'guest' room, closet and bathroom. It's a pretty comfortable space, and I'm impressed with how well appointed it is.

I greeted Chester with a hug and just held his hand while we talked. We realized it's been four years since we've laid eyes on each other (far too long) and yet, as always, time makes no difference. And while Chester looks different than the last time I saw him, and his speech is a bit halting, I found immediately it made no difference. They are the same eyes, same hand movements, same grace, and same man inside.

I met Chrys who was preparing for some time with the rest of her life while I'm here for the week. She gave me a tour of the most important caregiving duties, knowing that Chester will fill me in on anything I don't remember. Marilyn took off, and I took Chrys to the BART after she walked me through hooking up Chester's intravenous antibiotic. A little bit more complicated than giving a cat subcutaneous fluids, and very doable. Chrys's organization with the written instructions was a great backup.

Chester and I called ahead then went to pick up a boatload of sushi. I love sushi. I eat sushi in Madison, Wisconsin. It's different out here. The song "I'm in Heaven" kept going through my mind-- especially their "Rock 'n Roll" - how amazing! Joe stopped by during dinner for a nice visit. Chester and I handled some schedule change stuff for the week and some other logistics, then had some good time talking. Then the evening routine and bed. He's on the other side of the wall against which I'm leaning now sawing logs. That tree doesn't stand a chance. ;-)

All for now: the alarm is set for 3:30 so I can get up to prepare another antibiotic IV, which happens every 12 hours. More tomorrow.

A look inside

This morning we were up at 7 am and discovered a beautiful, crisp and sunny day outside. I was craving a coffee and was about to take off on a walk to the bakery when I asked Chester "Wanna Come?" And so off we went to the bakery, navigating the wheelchair on the uneven sidewalks, past beautiful flowers and to the local cooperative bakery. Each journey out is a learning experience, and after several frustrating attempts to get the wheelchair up a slope with the leg rests catching and scraping, a kind stranger gently reminded us to back the chair up and down inclines instead. This simple tip made the return journey much smoother. I am astonished by how many new awarenesses the wheelchair brings. A tiny crack in the sidewalk can all but tip the chair over. We are gaining proficiency in what I am now calling "the funky chair tango".

Right now Chester is on the massage table and getting his arms stretched and exercised by June, the occupational therapist from Rehab Without Walls. Later today a CMT (Chester Mainard Trained) massage practitioner will be giving Chester some touch. A relatively quiet day here at the Healing Loft.

Yesterday was busy! At 9:15 Chester had his first MRI in three months. I sat with him in the room and we breathed together as the huge magnets had their magical look into his brain. That afternoon we visited with Dr. Tang, who checked on Chester's head wound and also gave us a preliminary look at the MRI film. He didn't say too much- mostly that we will be interested in tracking changes over time and that no one MRI can tell the full story. He did show us that the primary tumor site is still showing swelling, which he said "could be a result of the radiation, a reaction to the chemotherapy, or a sign of recurrent tumor growth". Nothing was said for certain. The oncologists will look at the MRI and the perfusion reports next week and we will share more information as it comes. I tried to scan in some of the MRI film to share with you all, but was unable to do so.

After a long day, I was just beginning to poach salmon and steam yellow beets when we were joined by two lovely friends who came with a plate of raw tuna and a big lamb roast. Yum! Eating dinner with friends is always a welcome end to our busy days, and Chester so appreciates the simple joy of sharing a meal with good friends.

Chester ended the day with another simple pleasure: getting into bed freshly made with clean sheets.

Fish Eater

These past few months, Chester can't get enough fish. He eats a pound or more in one sitting, and has an endless appetite for fish of all kinds.

While poached salmon is the standard fare, every once in awhile he is blessed with sashimi quality fish that he can devour raw.

In these pictures, he is being silly after a meal of raw ahi tuna and avocado, gnawing on gristle like a beastie. I hesitated to post them because he looks like he is foaming at the mouth. . .

Hope Returns

December 1, New Moon.

Hope, Laughter and Strength are beginning to ease back into our days here at the Bakery Loft.

After three hard days in the hospital, Chester returned home on Thanksgiving. The three days in the hospital bed left him quite stiff and with weakened capacity in his right leg, making transfers and walking more difficult (and more dangerous). The psychological impact of the hospital stay (and the open head surgery, and the general anesthesia. . . ) had fostered a degree of confusion and sadness that lingered for several days. The IV bag was a new detail to be mindful of, making movement and sleeping all the more precarious. Hard times for Chester.

This past week has been one of recuperation and regenerating strength, flexibility, trust and confidence. Allowing the hurt and frustration in was a part of this, and Chester shared with all of us (including his rehab therapists and several guests) what he was experiencing. Fatiguing quickly, shaky transfers, heightened apraxia and other "setbacks" were all simply part of our days. Each day, his strength and stamina are slowly increasing. Each day, we seem to find more joy amongst the challenges. Yesterday we tore into wonderful laughter at the idea of Chester bouncing around on the airbed that is in the guest room. Chester said, and Jaime and I agreed, that it "feels SO good to laugh again!".

Hope was in short supply last week. She has started to return. Prudence continues to be busy, dictating extra caution and vigilance. Prudence has been busy these past few months.

Tomorrow Chester gets his next MRI (rescheduled from last week), which will provide us with valuable information. You all will be informed of the results when we get them (most likely the following week). His days continue to be full of therapy appointments, doctor visits, and all around continued rehabilitation. Each day is a dance of presence and interdependance, as I and other friends assist him when needed, and stand back and witness as he continues to be fiercely resourceful. There are so many factors at play (post-chemo and radiation fuzz, post-surgery, post-anesthesia, post-hospital, antibiotic, tapering steroids, etc, etc) that it is hard to discern what is effecting what. All we can do is take a whole-minded approach and meet each task as it comes. We persist in choosing consciousness and in "taking it easy".

Right now, Chester is working with his Physical Therapist, walking laps around the kitchen table. It is raining outside, and he is getting ready to take a walk outside under the awning. Tonight, we are celebrating another Thanksgiving with Marilyn, eating raw fish and honoring the New Moon, celebrating friendship, comfort, and love.

We continue on. May this new moon in Sagitarius bring optimism, profundity, and introspection to all of us. May our inner light and wisdom brighten this dark month. May we find wisdom and pleasure in our darkest places. May we know and embrace our animal nature, welcoming the season of rebirth and regeneration. May Love and Laughter flood into our days, bringing Hopefulness and Heartfulness to Us All.