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.

Aloha

Aloha All:

Well, aloha means hello -- but it also means goodby. (What it actually means is that wherever you are, I share the breath of life with you!) Today is my last full day as Chester's companion for a while, and, in common with the others, has been full and a bit pressured and a bit emotional and, over all, quite wonderful. This morning Chester negotiated a sublet of a vacant appartment only a few steps away from his for his mother and sister when they come to visit next weekend. He also dragged me around the complex and even up and down a flight of stairs later in the morning. Thus is was that after a light lunch we both sacked out for about two hours. When we awoke it was time to start getting our part of dinner ready (pasta with cilantro pesto) to complement the delicious roast pork loin and homemade chocolate ice cream brought by Gil and JD. But before that could even start there was a knock on the door and it was the UPS man with a large package for Chester -- the new shower bench. Of course "some assembly required" turned into a major "take the thing apart and reverse the arrangement it came in" (set for facing away from the water rather than toward it, at least in Chester's shower). Then Chrys and Dylan and J. Franklin appeared just so J. could meet Chester and make arrangements for tomorrow. Chester had no therapy today but will have lots of it tomorrow.

Now dinner is done, the "guests" have departed and we are getting ready for sleep. I am thus going to keep this short and wish you all a good night.

Aloha nui loa, malama pono!
Bill

Sunday

Aloha All,

Well, it appears that my luck at bringing Maui weather to the East Bay Area has held for yet another day. I am warned that this will change over the next week. With luck the return of winter will hold off until Tuesday after I am on my way home.

Chester and I have had a busy weekend, lots of shopping (stuff he needs) and home handy-man projects. He is excited that his new bath/shower chair will be arriving in a day or two and only wishes it could be that soon for his new "electric" bed (this will arrive in a few weeks)-- all of this thanks to Jaime's good work. Yesterday he had a long nap while I prepared the leg of lamb, mashed potatoes augmented with some celery root and parsnips, steamed butternut squash, and a salad (Chester"s recipe) of chopped baby bok choi and anise root with a light dressing of lemon juice, vinegar, mayonaise, salt, pepper and celery salt. By the time we finished cleaning up the kitchen it was already almost 9, but Chester wanted to see the rest of "Madagasgar" so we did. We were in bed by 10 PM and Chester slept soundly through the night until almost 8 AM. (I feel he was simply "catching up" now that the chemotherapy has had a chance to clear his system.)

We have not been lazy today either -- trips to Ace Hardware, an attempt to visit Ranch 99 (nearly impossible on a Sunday) and a quick stop at Whole Foods. We found the clips I have used to "control" the cord to the new light over the sink and a real bargan on wall clocks -- we got 2 of them for Chester, and cup hooks to hang the dragonfly lights from the ceiling. Lunch was cold roast lamb, the last of the salad for Chester and his favorite Calamansi juice. Then Chester visited with a friend and former student for about a half hour and then he showed me around the complex -- on foot! Finally, he (and I) have napped and are just getting ready for dinner (which is being delivered by Gil today -- with our grateful thanks). I will try to finish up the dragonfly lights tonight and hang at least one of the clocks and then, who knows, we may finish watching "the Triplets of Belleville" tonight!

Aloha nui,
Bill

Last Day Chemotherapy

Aloha Again!

The past 30 hours or so have been really good ones. Yesterday's visit with Dr. Lee was primarily a "where we are now" meeting that lasted less than an hour. Nevertheless, a concern of Chester's was cleared up in no uncertain terms by Dr. Lee. Chester had been greatly concerned by the recent seizure (and still is, of course) but when he said to Dr. Lee that he had only had 3 or 4 seizures since the first major Seizure in August, Dr. Lee told him that the facial "tic" that started back in April was, in fact, a series of partial seizures and he has been having them all along. The reason this is reassuring is that Dr. Lee seems to feel that the current medication is actually doing a tremendously good job of controlling them and it is extremely unlikely that any major ongoing seizure activity will happen.

When we got up this morning, Chester was in good spirits because he was able to take the last dose of the Temodar -- for now. We had breakfast and were taking care of some housekeeping chores when Marilyn showed up bearing much appreciated lates from Starbuck's. Marilyn was impressed that Chester's speech has cleared tremendously from where it was last week. Jaime showed up at noon and Chrys a few minutes later to go with Chester to the Social Security intake interview at 2 PM. We laughed because Jaime had on a lavender polo shirt and Chrys a plum colored shirt, I said I felt out of place because I was wearing green, but then remembered I had brought a purple cotton work shirt and threw that on over my dark green T. We all piled into Chester's car, Chester and his "purple patrol." The interview process took about 2 hours, but went really very smoothly and, once the "interogator" understood that this was a case that was likely to more than qualify, he was more than helpful -- even generous. We left with the feeling that not only will Chester qualify, but there will be an "angel" at Social Security guiding his application through the system. A process that can take more than 5 months to finish may actually be completed in about 2.

We got Chrys and Jaime back to Chester's so they could get on with the rest of their day and then Chester guided me to the Whole Foods Market to pick up some needed supplies -- tomorrow is "leg of lamb" day and that means nothing but the freshest of ingredients (Jaime brought him fresh rosemary from the yard at Forest Lane!). For tonight's dinner, we put together a pleasing repast from leftovers -- pork loin, mashed potatos and some freshly steamed broccoli and colliflower. Chester topped this off with a new favorite -- mashed banana with nutbutter (in this case cashew butter) with a "dollop" of vanilla ice cream! We finished off by watching the last of the three Wallace and Gromit episodes on the video tape, and then began "The Triplets of Belleville" (too slow), but then switched to "Madagascar," which Chester had already seen but enjoys. By 8:45, though, he was beginning to tire, so we got him ready of for bed and his is now snoring away behind me as I type this.

Chester has been very aware over the past few days of an "as yet unnamed" tension that seemed to be driving his increased shortness of temper -- something that was in operation in addition to the chemotherapy. The thing that finally tipped this over into consciousness for him, though, was listening to "old" ABBA tunes from the time just before the band disbanded. Chester says that these made him aware that the tension was due to an underlying sadness (those ABBA tunes were great because the band was turning their own emotions into music and toward the end of their time together, sadness was a large part of these). Oddly, once Chester was able to name the emotion to himself the tension has pretty much disappeared (dropping his daily score of explosive "goddammits" from more than 50 to no more than 7 or 8 at the most). I continue to be impressed with how much he is improving in ways that are more subtle and perhaps less perceptible by folks who are with him constantly. It is only in the last 2 weeks or so that he has expressed any interest in watching anything on TV, much less being able to actually sit and watch a full length feature. As Marilyn has suggested as well with her comment about this being "normal time," he has reached a point at which he must consider not only that his life my yet be very short, but also that it may, given his course so far, also be very long. Thus he is beginning to think in terms of "how shall I spend the rest of my life?" He has a natural tendency (as a Virgo) to be a bit depressed if everything is not going entirely his way. This can lead him to jump the gun and assume that the way he is today is the way it is going to be for the rest of his life. I have told him that I feel this is absolutely premature -- he cannot know yet what his ultimate condition will be and his nurologist and neurosurgeon would not begin to make such an appraisal until at least a year after the surgery. I know that he has taken my comments under advisement, but not yet how this will turn out. At any rate, today he and we have many things to celebrate!

Aloha nui,
Bill

So Far -- Good

Aloha All,

Yesterday was another long and stressful -- but successful -- day for Chester. The highlights were his OT session with June during which he walked a few steps without the right ankle brace and without the cane in the morning, and then another long foray into the "mysteries of the shopping mall" with Doreen. He walked from the car into Payless shoes, bought a new pair (same shoe, different size, in the hope that he could wear the left shoe from the old pair and the right shoe from the new together). Then Doreen had him walk to Jamba Juice next door for some refreshment while I sped to the Safeway to do some needed grocery shopping. Once I rejoined them at Jamba Juice the plan was to drive elsewhere (Piedmont?) for some lunch and possible further shopping. However, as we headed to the car I reported that I had been unable to find nylon thread and needle at Safeway in order to repair one of the straps Chester uses to help keep his right hand and wrist extended. With Long's Drugs right in front of us, Chester made an executive decision that this was more important than what they had planned. So, he walked the several yards into this HUGE drugstore. Of course, we entered the store at the end beginning with row 1 and, upon asking, we discovered that the sewing supplies were in row 28 C, which was 2/3 of the length of the store and all the way to the back! Nevertheless, he did it! Walked all the way to 28 C before sitting down in the wheelchair to rest. Doreen and I dashed around finding the things that were needed -- I even found a suitable light fixtue for over Chester's kitchen sink and the duct tape June had asked for in the morning, in addition to the sewing supplies. Then, Chester walked all the way back to the car after sitting only while paying for his purchases. Even Doreen was satisfied with his efforts.

While these were the "work" highlights of the day, the "play" highlights were a brief visit with Jaime at lunchtime and a somewhat longer "after work" visit from Chrys and her "boss" Joe just before dinner. Dinner was baked chicken sided with rotini tricolore "dressed" with a sauce of onion, mushrooms, pinenuts and some of the wonderful cilantro pesto made to Chester's recipe that he produced from his freezer, heated together with olive oil, butter and then "juiced" up with some clamata juice and Sake! Needless to say there were NO leftovers. Chester decided on "Bel Canto" dinner music and then we watched the rest of "Wallace and Gromit," this time with much more appreciation. Chester was in bed by 10 PM and pronounced it a stressful and trying, but overall quite productive day. As if to prove how much he had worked, he "slept in" this morning until 7:30!

This morning there was no "work" scheduled until 11 AM so Chester used to time to shave and shower (with some assistance) and to tidy up his place a bit. It is now near 1 PM and he and Jaime are off to an appointment with his neurologist, Dr. Lee. While they are gone I am finishing this post and putting up the light fixture over the sink. Then they will pick me up and we will go to lunch!

Aloha nui,
Bill

Day 2 Chemotherapy

Aloha, All

It has also been some time since I Iast posted, but this week I am companioning Chester and I will make every effort to keep the blog up to date. Monday was the first full day of this round of chemotherapy for Chester and he did have some reservations about the increased dose for this round (upped from 300 mg to 400 mg per dose). However, where his reaction to the first round was tremendous sleepiness, this new round started with unprecidented wakefulness, bordering on the "hyperactive." My flight from Maui was delayed by almost 3 hours and when I arrived at Chester's place it was just about 11 PM -- but to my surprise, Chester was still up (though beginning to fade due to a sleep aid he had taken). He said he had been up since 5:30 AM and hadn't even taken a nap! We sat and talked with Jaime for a few minutes (and, of course, Augie had to join us for a "greeting scratching at the base of his tail"), and then I helped Chester to bed. He slept well and was only up once in the night, but was wide awake again by 5:30 on Tuesday. He cheerfully instructed me on how to help him dress -- especially on how to get the compession hose on with "ease, elegance and efficiency." We had a light breakfast (Kix and a banana for him, toast and coffee for me) and then were ready for his phyiscal therapy with Doreen.

Doreen was carefull to assess how Chester was doing with the chemo and between them they decided to dump their previous plan of taking him shopping at Ranch 99 in favor of a visit to Ace Hardware in El Cerito and, possibly, then to Pay-Less Shoes about a block away from the Ace. We piled into Chester's car (Doreen drove as I am not yet familiar with this area of the East Bay) and found a parking place as close to the front entrance to Ace as we could -- this was still 25-30 yards over uneaven sidewalk, but Chester took it all "in stride." Once inside he was like a kid in a candy store -- loves hardware stores. This one is about a full city block in size, but it was patched together out of several smaller buildings with different foundation levels, so the tricky thing about it is that every 25 feet or so there is some kind of incline to offer a challenge. Chester rose to the challenge, but also rested several times in the wheelchair. Nevertheless, he stood in the checkout line -- for some time as by then the store had become busy -- paid for his purchases (a short stepladder for those of his companious too short to reach the stuff stored atop his kitchen cabinets and some PVC pipe to use to extend the length of the right break handle on his wheel chair) and then walked back to the car. This was a lot for Chester, but especially good for him because while we were there the store filled up, giving him the opportunity to walk while in the company of many people (something that has bothered him in the past). The other really good thing about the place is that while were there Chester counted at least 5 other handicapped shoppers, simply going about their daily business. By the time we got back to the car, the time was up and the foray to the Payless was postponed to the next session (today). Doreen's assessment was that Chester is a bit more easily fatigued now and we all attribute this to the chemotherapy. We are grateful, though, if this is the full extent of the side effects of the new dose.

We arrived back at Chester's to find Marilyn just letting herself in the gate. We all had a short visit while I got lunch (I have never used the microwave as much as I have in the past 24 hours). After lunch I proposed a short nap that stretched (for me at least, I find the time shift going in the "Eastward" direction diffucult) to about 2 hours. The afternoon and evening were free for "leisurely" talking and dining and we attempted to watch the DVD Marilyn had brought (Wallace and Gromit, the Curse of the Were Rabbit." But it was clear even in the first 20 minutes of the film that Chester was not able to get into it. "It's awefully Brittish," he said. We decided to save the adventures of W & G for another time and it was "lights out" by 9:30.

This morning he has already had a good session with the occupational therapist, June, and we are waiting for Doreen to arrive to begin the afternoon's work.

Aloha nui,
Bill

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.