2 Day Update

I've started this posting three times. Third times the charm they say. My problem is in trying to communicate my experience in the last two day, in the time that I've spent with Chester. Yesterday, he was so tense (it was early in the morning when I was there, and also later in the day). He was so tense in the evening, going in for his evening meal, I suggested that he eat in his room. He agreed, and we were given permission to do so.

Thursday was a really busy day for him. They had him up early (early dressing and meal) to get to the other hospital for an ultrasound. (I do not know the results of that test as yet.) And the previous day of going to his home and finding out it was totally inappropriate for him to stay there while he is still in a wheelchair continued to stress him out. He had a couple of visitors in the early evening, and I really want to thank the visitors for keeping their visits short. Many times I hear him not wanting people to leave, he loves the visits especially because it is totally out of the routine the hospital's rigid schedule. But the energy output can wipe him out unexpectedly when he over does it.

So we two sat and had a quiet chat while he ate. Because of my schedule, there has not been many times in the last month when the two of us had the time to sit quietly with each other. The main focus of our discussion was around the fact that he feels like he has forgotten who he was before the surgery. He also mentioned that with so many changes, he just can not keep up with all the changes, and he feels that he has lost something, forgotten something in all the changes. I feel that sentence does not flow or necessarily makes sense, but that is how it was coming out.. sort of confused. But with all the changes, I think that is kind of how it must feel to him. A sort of confused feeling of having forgotten or lost something in all the changes, and he can't remember what it is. And this in the midst of all the physical losses and muscles forgetting what they are supposed to be doing that are going on in his body. All I could do in the moment was to affirm that the Chester I knew is still there.

Today he seemed a bit less stressed, though still more stressed than usual. He is really looking forward to being released this coming Tuesday. He informed me that the insurance company has agreed to supplying all the physical objects he needs (wheelchair, hospital bed, etc.) for his move home. Jaime is locating a space that he feels will be adequate for their needs. And the insurance company has also agreed to "Rehabilitation Without Walls," a program of rehabilitation that comes to him, and gets him out in the community to interact with store clerks, finding his way through handicapped entrances, etc. Its a new program, so he was really gratefully surprised that they had agreed to it. He feels he has a guardian angel there at the insurance company.

I did not arrive today empty handed. Since it was lunch time, it was not a latte, but sushi. My experience with him was not like Wolframs at all. He did not smell it, he inhaled it! He cracked me up how quickly he ate (I think he worries that they will take it away from him). I took him salmon, the highest quality fish, of course, and the highest in the omega 3 fatty acids that is good for his brain. We shared the table with two other inhabitants of Herrick, and so we shared the sushi (something had told me to bring enough). We had a very pleasant meal with Napoleon and Margaret who were both jealous that he is getting to go home before they get to leave.

And then he was off to another change - his first outing in the community. He was headed for a bookstore, so I slipped him some money, and the name of his current favorite author (the one who wrote 'Stinky Cheese Man'). I was horrified that they would take him to a bookstore and not make sure he had money in his pocket. (For those of you who do not know me well, I have 6 bookcases, and decorate any horizontal surface I can locate with at least one pile of books).

So more changes are in store. Release from the hospital, relocating in a new home location, and starting new routines of travel to chemo and radiation every day, plus the rehabilitation in and about the home. Keep that good energy coming his way. He is planning to continue teaching and even has the support of his neuropsychologist now, who voiced reservations and doubts at the mention of this goal of Chesters earlier this week. But with changes. Which might be the biggest challenge to face Chester: managing the changes. But then again, this too may change. Its all in flux, flowing and changing, coming back together. Go with the flow.

Sometimes I feel like a child, and I stop and stamp my feet and refuse to flow any further. But I know I could drown if I stop and complain to the currents about where they are trying to take me. So I float. Meet you in the flow.

Literal Ups and Downs

Today was huge in several ways for Chester. This morning, the dorsal-flexion-support brace for his right leg arrived and got tested out, adding "great support" to his stability during Physical Therapy, as well as got him more enthused about his ability to get around independently. As you've been aware, he is walking with minimal (and sometimes no) assistance, and has also been practicing stairs for his anticipated return home - so was feeling pretty optimistic about his discharge on Tuesday (as was I).
Then Chester, Jacci (his Physical Therapist) and Herb (an At-Home Expert) and I drove from Herrick to Forest Lane, where we would go through a "Home Evaluation" for his return.
As I've explained, Chester's apt is on the lower level of the main house and can only be gotten to via stairways up or down. The outside stairs proved too treacherous (as well as "impossible to make safe" in the long run), so we entered the main living space of the house from the front. And here's where reality started biting both of us...
Turns out that taking steps on polished tile surfaces at the hospital requires much less effort than walking across low-pile carpeting (duh! the things we take for granted!!) - which impeded his progress and cost him extra energy. As CM rested from the exertion, I showed Herb & Jacci down to his apartment where it became quickly obvious that - aside from the stair situation - he would not be able to manuever in the small bathroom, nor would his bed provide the support (via handrails and guards) for him to transfer from the wheelchair to the mattress and back.
Upstairs, Herb relayed to Chester his deeper concern that - even if the radiation and chemo stayed relatively benign in their side effects - his energy would certainly start to flag after having to deal with getting up and down those stairs every day for his appointments (not to mention what kind of creek we'd be up were we in some kind of emergency situation!)...
Both of us were disappointed, but we'd anticipated this and had (we thought) come up with another option - that of him moving into my rooms upstairs where there were only 3 stairs to deal with (from the main living area to the bedroom and bath). It would provide plenty of room (there's a sitting room, a bedroom and dressing room) for "a life" beyond his bed as well as a bathroom only steps away. However... his wheelchair didn't fit through the narrow bathroom doorway, nor can the shower and/or tub be made to work for him without serious remodeling. So our hopes for the "simple alternative" were dimmed considerably - and I think it safe to say that we were both in some shock from the realization of just how "unfriendly" the house had become to his mild disability.
Fortunately, we all headed back to Herrick, where his routine picked up as usual - thus keeping him from processing alot of the shock and disappointment. I spent the afternoon consulting with friends and my realtor, brainstorming for new ideas, crunching numbers...when I got an unexpected phone call. FROM CHESTER! (He'd been told by his Therapists that it was time for him to start making and taking phone calls 4 or 5 days ago, and he'd completely panicked at the idea because of his halting speech. So I told him he needn't talk to a telemarketer or anyone difficult - he could simply call a friend or family member who would help him through those first awkward moments of "re-entry.") And honestly, during our little chat of perhaps 10 minutes, I almost forgot what's transpired over the past few months - that this seemed just another of our little "Wilma & Betty" conversations when we weren't in proximity. I mention this not so much to relay my small delight in that seeming return to "normality" - but more as a counterpoint to how incredibly efficiently Chester is communicating again. Other than a couple of frustrating instances, he spoke clearly, in complete sentences, and without too much effort! It really is impossible to convey the daily improvements in his speech/expression! So that was a high point for us...
Tonight, after dinner, he and I got a chance to de-brief one another on our "Home Eval" experience. The disappointment at Forest Lane being problematic allowed some fine (though difficult) insights and we also both shed some serious tears at these unexpected developments... But we moved through it and started tossing around other ideas... Perhaps a first-floor loft space in a building we know? Or maybe a "disabled-friendly" apartment? We don't know. But starting tomorrow, I'll be looking for a new living space for him ("solo" but with space for a companion?) or for the pair of us (?)... So! Stay tuned! It appears that Leslie, in her infinite Wisdom and unrelenting sense of the Ridiculous, may be goosing us both in unexpected directions - and our job will be to find the flexibility to swim with the Changes...
In the meantime, any extra chi you'd like to intend toward solving this living-space complication would be GREATLY appreciated! xox Jaime

Perspective

Aloha friends and family. It is a week now since I returned to Maui from California -- and I am already feeling a little "out of touch" with Chester. This is no doubt because before his surgery I was in daily conversation with him over the phone and then, within a few weeks after it, was there in Berkeley where I could see for myself. Nevertheless, it is clear from the reports published here in the Blog, and especially from those notes written by Chester himself, that he continues to defy the odds with his rate of recovery. I freely confess that I will be much happier when he has regained his mastery of the telephone and that ongoing daily contact can be reestablished.

I am grateful to Wolfram for capturing in his description of his visit with Chester the true "flavor" of interaction with him now. Chester is at once "simple and extremely profound" and yet he has a complete awareness of the nature of his thought before this happened to him. By now, he actually knows that he could "recapture" that if it were something he really wanted (has recaptured it in terms of the "wicked repartee" hinted at). Only, I don't think that this will be the path Chester will choose. The thought content that was reported is very much of a piece with what I heard from Chester both in my conversations with him and in his conversations with others that I witnessed. Not surprisingly the ideas continue to evolve and sharpen. I did not report any of those ideas, though, because my intuition has been to hear these expressions from Chester as though they were seeds in an unripe fruit, to be brought forth in the fullness of time in their finished and fully formed structure. What I especially liked in Wolfram's description were the hints he gave that this is so, while at the same time being perfectly true to what Chester actually said. Well done!

During my weekly formal meditation on Chester yesterday there was no sense of anything amiss with him -- energetically he felt "whole" and quite a bit better balanced than usual. He also still literally "floats" in a vast pool of support and love -- and that can only mean that all of us understand quite well that the contract is essentially a lifetime commitment -- and willingly and happily so. For that all of you have my thanks.

Aloha nui loa, e malama pono
Bill

Climbing the Mountain

Today marked one month post-op. Chester and I took some time to just reflect on these four weeks, and the tremendous amount of life-affirming energy that has been generated by ALL of us in that time. We remembered many moments from the past month and saw so clearly how each day has brought More Life, More Health, and More Joy. We measured the re-awakening of his body. He recalled the day when he realized that he didn't know the ABC's, and then he sat and wrote an eloquent three page letter. We remembered the stillness in his right leg and Dr. Tang telling us not to expect any movement to return. And then Chester climbed 16 stairs! We sat and talked about his journey over the past three months, and found a big fountain of gratitude and joy for being ALIVE and Thriving! This past month has been truly magical, not only in the unfolding of Chester's recovery but in the unwavering love and support that is generated each and every day by this circle of friends, family, and allies. Many thanks to you all for staying with Chester through this incredible month!

And we continue!

Chester is beginning to look into his immediate future and is feeling full of hope, brewing up all sorts of plans for continued teaching and exploration. Today he spoke excitedly about the prospect of teaching Deep Tissue Massage in November as scheduled. He knows that it may look different than before, and is inspired to bring his new lessons and depths to a classroom circle. We are also discussing the possibility of teaching the Breath Intensive as well. As he said today, he has "never been so aware of the preciousness of each breath".

Tomorrow morning the core rehab team, Jacci and Herb, will be coming to Forest Lane to do an in-home assesment, making any suggestions that would ease Chester's transition. Chester will be coming with them, and is excited to try out his new stair-climbing skills here at home. I expect there will be a brief session of dog-therapy as well, if Auggie has anything to say about it!

Chester is scheduled for "discharge" next Tuesday, Oct. 4. HIs homecoming will be both beautiful and challenging, and we are all prepared to make the transition as easy, elegant, and efficient as possible.

Radiation and chemotherapy are underway, and so far the side effects have been much less than Chester expected. The "post-radiation fuzziness" that Chester reports is mild, and he persists in focusing on his rehabilitaiton exercises. I sense that his body has enough resources to deal with the detoxification and the rehabilitation both, with plenty of energy to spare. Laughter is a medicine we are all taking in BIG doses!

After several days at home last week tending my injured ankle, it is pure delight to be back in daily contact with Chester. Indeed, the days of rest were a beautiful chance to really integrate all of the teachings I have taken in this month, and I emerged with an even deeper sense of awe and respect of the process he is moving through. Today, as I began putting both feet back on the ground, I was overhwelmed with the simple joy of walking. Each step, each contact with the earth, is pure pleasure. I know that this is a joy I am sharing with Chester, and a feeling that I intend to remember.

One of Chester's teachings is that "We are of this earth". We belong here, in all of the wacky and diverse embodiments of our humanity. Looking around the dining room today, at all the beautiful humanity that was present, I started to weep. The elders recovering from strokes, folks coming out of amputations, nurses helping folks sip through straws, families gathered around their loved ones. . . So much Human-ness. So much Life.

May you all enjoy each step of the Way,

Chrys

A Visit With Chester

The following was written by Wolfram Arnold who visited with Chester this past Sunday. It really speaks to the experience of 'being with' Chester, not the medical stuff which is amazing, but sitting with him. Just imagine him eating sushi with me instead of melon, and its the same experience. But, in Wolfram's words:

Wolfram Arnold: Visit with Chester
I went to visit Chester at Herrick campus yesterday (Sunday). Chrys had mentioned that he loves fresh fruit, in particular melons. So I went to Berkeley Bowl, which was also a first for me, and picked up the best smelling melons to be found; in this case a so-called Crane Melon, along with a few other goodies, like raspberries, plums, peaches. This was my first visit to his Herrick room and my first awareness was the amount of natural light. I found Chester sitting in his room, writing! This picture was so beautiful that I had a sense of intrusion, alerting him to my arrival. He was happy to interrupt though and pleased to see me. I unpack the melon.

He smells it. And smells it. And smells it. It is a soft, sweet aroma. As he points out while we are eating it later, it is at the peak of ripeness which only lasts a few hours. Sun and earth. Not familiar with hospital etiquette, I was actually somewhat uncertain as to how and where to prepare it for eating. However, little need I worry, Chester has it all figured out. So we do the chores first. He leads me to the patients' refrigerator, the plastic containers contained therein, one of which needs its contents thrown out and to be cleaned. I cut the melon, he slices the soft pulp; we proceeds to enjoy it. It strikes me how agile and adaptive Chester is. Eating with the fingers is one option, a fork would be better, but none is available. He settles on a small plastic cup they use to dispense medication with, as scooper. If you can adapt, you can create.

He savors the fruit thoroughly. It feels like every bite is a new sensory explosion, a feeling of joy and gratitude. Two-thirds of the way through the melon, his enjoyment leads me in a rather impromptu way to pose a simple question, one that he has taught me so well: What are you aware of?He almost chokes on the bite he is about to swallow. I regret having brought about such a change in energy. Then he becomes serious, because little do I know, he has some deep insights to share. He notes that he can afford the space for some creative writing now. When he previously had to consider, re-consider before he could act; he now feels the hyper-vigilance of every single step can be relaxed a bit. While the guard cannot yet fully come down, it can be loosened. This creates space for him.

He speaks about help. How the "need to help" is power struggle, and is the default option. How true help is power-sharing. He speaks about choice, for himself and others; a choice between power struggle and presence. He speaks about the violation of his physical integrity; and about the resurgence of hope. He uses this term several times, resurgence of hope, and it is always accompanied by a gesture of his hand, moving from his abdomen to his heart, opening and rising outward from there. I ask him why power struggle is the default option. He replies, forcefully: Unconsciousness!

He proceeds: He used to love the "complicated mind;" fueled by incessant curiosity. And at the same time, the complicated mind produces a lot of chatter in the head, gears turning fast. Through his present situation, he has discovered what he calls the "simple mind." He says it has surprised him. The simple mind lets him feel joy and peace. I regret not taking notes while he was speaking; I'm fearful of omissions and misrepresentations of his words, his thoughts and message. And while I write, I realize it is my own complicated mind and its curiosity that desires this perfection. In my own interpretation, the simple mind is a state of organic assimilation of these wisdoms, free of need; expansive; peaceful.

Then another visitor, his friend Paul, wanders in. Chester relates a recent accomplishment that has him excited: Walking. No less! Saturday, the Occupational Therapist showed up at the same time as Jaime was about to leave. So, she suggested he walk Jaime to the door. And he did! She only grabbed the front and the back of his pants as safety measure. Then he proceeded on a self-directed stroll around the nurses' station under his own power and balance. Chester says he dreamed he could do it, and still it surprised him too. And at the same time, with all progress, for the first time, he also wondered whether the struggle it worth it.

More visitors show up, Pat and her friend (whose name I didn't catch-sorry). I prepare to leave. He thanks me for talking. I don't know what to say; I ask him if I can share it; he says he has a policy of total transparency-naked but honest. I bow to him; Chester takes his right hand, forms prayer hands, bows back. We part. My visit has left me in awe. Not only is he very much alive inside, his wisdoms and thoughts and teachings that I had already been an admiring student of seem to have been multiplied manifold. His I/O systems are in a state of re-expression and re-formulation. While this has him frustrated at times, he also responds to it with deep insights, marvel, adaptation and grace. This also seems to let him grasp what may be the purpose of this journey.

Stairs! & Joyful Visits!

As you can see, Chester continues to make amazing progress, both expressively and physically - he actually climbed a set of stairs today, much (he admits) to his own surprise! This, I'll admit, is a GREAT milestone, since it may alleviate our having to find a new place to live sans stairways...
Also, please do not mis-read this latest note regarding visitors. The trouble he mentions was ONLY at the very beginning of his receiving guests - so please don't be self-conscious about "doing something wrong" when visiting. As he says, the visits are a DELIGHT for him!

An Amazing Saturday!

Chester Writes to Everyone:

Holding Positive Energy

Hi all,
I spent some real quality time with Chester this morning. He feels that the radiation and/or chemo are making him feel tired. For the first time in a long time, he was in bed resting when I arrived this morning around 9:30 am. Then a woman named Bergie stopped by to chat with him. She is a survivor of a stroke that created about the same effect on her body as what Chester is dealing with right now. She could not speak for months afterward, and was also in a wheelchair. After she left, Chester remarked that she made him feel hopeful. But then he broke down and started crying. He said that he would like to know how much time he does have, and no one can tell him.

I told him that I carry a dichotomy or a conflict within myself. On one hand there are the statistics that are very scary and threaten to push me into despair. On the other hand, there is the hopeful belief that he will beat the odds. I carry both within myself, but I choose to hold onto the hope and belief that he can beat the odds. So I invite everyone to send him that energy of hope. He has beat the odds so far, in his speach, in his recovery speed, and in many other small ways. The staff cites him as a wonderful person. Bergie said this morning that he helped her more than she could possibly help him. What a testimonial!

I do believe that he will be able to teach, if that is what he chooses to do. I hold onto that belief. But that is step 946, and we are only at step 273 (this is the framework we use to keep ourselves in the present moment). I caution anyone making statements about what he will or will not be able to do. At this point, everything is possible.

So some other mundane facts. I was there yesterday when they measured him for a walking brace. They made a cast of his leg, and the brace will keep him from overextending his knee. It will fit over his leg and the shoe will go over it. Its pretty amazing what they do with braces now days. My brother had leg braces when he was a kid, and they were so big and heavy it was hard just lifting them off the floor. This will be a great help in Chester's walking. They will have the brace ready next Wednesday.

Also, two more days, and they will allow Chester to go to the bathroom (1 & 2, or poop and pee) and get himself in and out of bed by himself, without a spotter. He has been doing this for a while on his own anyway (they don't know how often he has been doing it... but he does not want to wait when he has to pee). He has been becoming more and more independent on his own in the last week. He always did walk fast, and I would complain to him about walking two or three paces ahead of me... and now in the wheelchair he wheels himself faster than me! I guess I never will catch up with him.

Be well and keep that positive energy flowing.

Love, Marilyn

Day Twenty One

Aloha all. Imagine my surprise when, after publishing my post last night, I read Marilyn's and found out that the radiation had already begun. Then it dawned on me that at the exact time this was going on with him, what I thought of as "dozing" on the plane somewhere a few hundred miles off the coast of California, was, in fact, a startlingly focused "meditation" on Chester and what he now faces. While this is not the full bore extravaganza I had envisioned for the start of these therapies, perhaps this was even better and far more what he needed at the time. I plan to continue such meditations each Tuesday at 10 AM Hawaii time (1 PM PDT) until the treatments (or, at least, this round of them) are completed. I would like to be able to report that the result of that meditation over the wide Pacific was a clear sense of triumph for Chester -- but this was not the case. The issues remain clouded and subject to far too many variables for me to get such a sense. That this is so only strengthens my resolve to support him in any ways I can.

I am glad to hear from Jaime that Chester is committed to teaching again and my only caution is that I feel it is way to early for him to be deciding what he will or will not teach. I am quite certain that Chester will teach massage again -- even if it will not be in quite the same way as in the past. He is too clear in himself now to ignore for long the certainty that there are plenty of his students who can demonstrate the basic moves he has always taught, and long before then he will have realized that his new sensitivity will give him the ability to subtly adjust the touch of any who wish to learn from him, even if he does it with only one of his hands. I well remember from my own stint as his formal pupil that he could watch me doing something and with only a word or two completely alter how I was perceiving the flesh under my hands. Inevitably, my touch would alter to accommodate the new intuition. He has long been able to sense what I might have been feeling with a client even long after the actual massage had been completed and only from my brief description of my sensations. I feel that once he has regained his sense of balance, this faculty will have multiplied many fold. Without a doubt, if he is able to teach at all, massage will be among the many things he will impart.

Also, after reading the post from Chrys, I have to apologize to her for misspelling her name in past Posts. I am relieved to hear that there was, apparently, no break -- and that this is something that should heal well so long as she gives it PROPER ATTENTION! "Consciousness" and "presence" are Chester's watchwords here.

Well, that is quite enough from me tonight.

Aloha nui loa, my friends and family,
Bill

Radiation/Chemo & A DISCHARGE DATE

Not much time to report in, but wanted to send a brief update.
Chester's radiation therapy began (unexpectedly) yesterday (Tuesday) - a day ahead of what we'd been told. The session had been described as a "Dry Run" only. Instead, the news was delivered - rather haphazardly - that no, indeed, the first treatment would happen in spite of what we'd been told. This upset the Cheeky One, but as Marilyn has written, he breathed, adjusted and accepted it. "One day sooner to start is one day sooner to finish."
Chemo began this morning - an oral therapy, Temodar, which (according to the available literature and testimony) appears to be very light on side effects AND very effective against GBM (glioblastoma multiforme). His second radiative treatment today'd been scheduled for 445p, but when I arrived at 330, he'd already had it! A spot had opened up early - and he said "Fifteen minutes. In and Out." No muss. And less fuss (although the mask he wears has interfered with the healing of his sutures - they're a little "weepy" - so it was adjusted a bit today). Basically though, he's already settling into the process. You know him - always a quick study!
At any rate, his calm manner and smoothed demeanor when I arrived told me he'd rested well (he's on a new sleeping aid: Elavil), worked out efficiently in his various therapies, and was enjoying some much-needed downtime. Chester's speech continues to improve; he mentioned tonight his intention to teach again (albeit probably not massage), and drive again... so he's definitely looking ahead!
We've arranged a meeting Friday with his Social Worker, Jayne, to discuss his discharge (tentatively set for Oct 4) and some of the details regarding his return home. (This may be problematic - or it may not - depending on how able Cheeky is to walk and take stairs, as there is no way to his apartment without a staircase). At this moment, however, we're feeling confident that these potential hurdles may be "moot" by the time we get there...
"Be Here Now" is the game, and we're playing it as gracefully as we're able. (Chester is the admitted "Ruling Queen" at it, however - without question!)
So, the new gig is afoot, and Chester / Michael / Eric seems to be paddling along with the currents quite smoothly for the moment. Keep up the good energetix everyone - and please include Chrys in those love-beams! xox Jaime

Healing; Hospitals and Hearts

Indeed the universe has lessons for me on health and healing. On Sunday, my "day off" of being with Chester, I found myself in Kaiser's emergency room. This time it was my name on the wrist band, my vitals being checked, and my own painful opportunity for "extreme embodiment exploration".

A severe ankle injury has had me curled up and licking my wounded paw for days. Praying for its strength and flexibility to return. Breathing into the pain, feeling into those mysterious corridors of sensation as sharp pain shoots through my leg, into my pelvis and up my spine. Asking for and receiving help from loved ones. Noticing all of the movement and mobility I have taken for granted. Holding myself in compassion. Practicing patience and conscious movement. Bringing into my body all of the lessons I have been given from my time with Chester.

Today I was given the privelege of sitting with a doctor and looking at the x-rays of my foot. The bones were strong, clean, and intact. I was mesmerized with their beauty. The flesh around the bones, however, is in revolt. The doctor's best guess is severely inflamed tendons, which is causing major swelling and putting pressure on the intricate network of nerves that runs through the inner part of the foot. She strapped me into a huge black "equalizer boot" and told me to "be easy on it" and let it heal fully. I heard this loud and clear, as this injury dates back to when I was 12 and broke my ankle in a defiant act of defending myself and my friends. I never let that wound fully heal- took the aircast off 10 days early so I could frolic on the beach. I've been walking around on a weak ankle ever since, and though I've always been aware of it, I've never fully addressed it. Now, I have the opportunity to heal it more thoroughly and bring all of my awareness to relearning to walk on this earth with both feet strong and sure.

I've missed Chester so much this week, and spent a lot of time resisting the fact that I couldn't be with him for five days straight, especially as he begins the next phase of his treatment. I've held him closely, allowing his presence to flow through me and inform my self-healing. I've resisted the temptation to delay my own healing by rushing to his bedside, knowing that he is well-held and cared for. I've told myself a thousand stories of 'why this, why me, why now' and let go of most of them, returning to the mystery of it all.

My ankle is but one story of hurt and healing. Amongst this "blog-field/circle" there are surely hundreds of stories of growth, repair, strengthening, healing, and transformation. All of our bodies are in this wild game together, dancing the cycles of growth/decay, injury/repair, life/death, gathering/release. . .

May we be Big enough to hold all of this and more!


Chrys

Day Twenty

Aloha from Maui (again) I am posting this description of yesterday's events a bit late today as I have successfully returned home to Maui and did not have time earlier. As I write this I see that Marilyn is preparing a post about today's events.

Yesterday was the 20th post-operative day and it was striking in my mind for the dramatic picture that is Chester now as opposed to the Chester of only a few short weeks ago. Yesterday he looked bright and cheerful, vigorous and RESTED. In some senses it was a quiet day. In terms of his closest "hangers-on:" Marilyn was at work, Jaime was away from town for a few days (though he did return late in the day) and Chris had called early to say that she had injured an ankle, spent the night in the emergency room and would not know the full extent of her injury until seeing the orthopedist on Wednesday. Quite understandably she opted not to tempt fate and try to negotiate BART that day. This meant that I had Chester all to myself for most of the day until a few welcome visitors arrived at and after dinner time. But in other senses, it was a day of new strides forward for Chester. He is intent on demonstrating his ability to be independent for most self-care tasks -- transfers to and from the chair, dressing himself, taking care of all bathroom needs -- and, you know, with very few exceptions he did it all on Monday! (The addition of elastic shoelaces was a huge boon, though -- thanks to Herb, the occupational therapist.) On top of these successes -- it is becoming clear that Chester's leg and arm continue to awaken and the therapists are as intrigued about this as we are. All in all, it was tremendously encouraging.

In the evening, the visits were all copesthetic and when I left to go pack for today's return trip Chester was deep in discussion with Jaime about the events of recent days.

This morning , I stopped in on my way to the airport and sat with Chester during his breakfast. He was ecstatic because his new sleeping medication had allowed him nearly 8 hours of sleep and did not interfere with his ability to dream. Yay.

Anyway, with this post I conclude the first-hand reporting part of my contribution to this record. The task of reporting Chester's daily progress will fall to others and I will return to posting less frequently as I did before my visit to Berkeley. But, before I do, I would like to suggest that the start of chemotherapy and radiation therapy is, in many ways, just as important as the surgery was. I would therefore like to propose a formal "psychic" marking of the actual beginning of radiation therapy, similar to the one we made for the surgery, once we have a date for the actual start (the treatments aren't long -- only last a few seconds actually -- and the chemotherapy is ongoing). I, at least, will then make it a weekly ritual to lend my support to the process until the treatments are concluded.

Well, it is late and I have forced myself to stay up in order to facilitate returning to Hawaii time, so now I must bid you all Good Night!

Aloha nui loa,
Bill

Regarding Chris

Hi all,
I just found out today that Chris sprained her ankle on Saturday.... a really bad sprain. She had an old injury to the ankle (happened when she was 12) that did not heal properly. But the x-rays showed a bone splinter that was cutting into the tendons. She is going to the doctor again tomorrow to find out what needs to be done. She told me that one option will be an operation to scrape the bone.

So Chris could use our prayers/healing energy/wuwu stuff to be directed to her along with Chester. She is feeling that she is letting Chester, and us, down, etc. etc. etc. Consider any scenario, and she has probably spun it through her mind and emotions. She does realize that she needs to take care of herself... so the healing goes on. She said its kind of weird that its her right ankle, and she has taken lessons from Chester moving around with a bum leg to know how to move herself around. She was in pretty much pain, but that seems to have passed with the swelling going down.

She is the second person I know who twisted their ankles on Saturday. Mercury must have been messing around with Pluto or Uranus or something like that. It seems like its always Mercury and those other two guys messing our lives up.

So just know that she has been Chester's 'guardian angel' for the last three weeks. I will keep you posted on her condition. I'll write about the cheeky one in another post.

My love to all, Marilyn

First Radiation Day

Hi all,
I spent a big portion of the day at the hospital with Chester today, some in the morning, and then again in the late afternoon. We will start with the morning. I got to his room about 9:30am with his latte in hand, and he was not there. I was told he was in physical therapy, and so I was able to observe this therapy for the first time. He was laying on his back, knees drawn up and doing exercises with the therapist. Its amazing to see him move his legs, and do exercises to strengthen the muscles. He was amazing the movement in his right leg. We got back to his room just in time for the speech therapist. I was on the phone talking to Chris for most of his session, but she basically just sits and chats with him. Of course, she is asking questions that give her the information she wants and puts him through his speech patterns just by talking. He showed her a letter he was writing, and she gave him 'homework,' editing his letter and inserting the small words he tends to leave out (the, an, a.. those kind of small words. Then came the neuropsychiatrist.... it was like a parade of the employees there almost. And when his half hour was over, here came Herb, the occupational therapist... to help Chester in the bathroom. He actually didn't help, Chester does it himself. He just needed to be there to 'spot' him. A friend, Pat Barber, was there so we went out to get sushi for lunch (and of course we shared with Chester). It was a great lunch. Jaime came in and he was going to go down with Chester for the 'dry run' of the radiation while I ran home to do a few things.

When I got back, it was to find out that the 'dry run' was the real thing. It kind of threw Chester for a loop for a bit. He had been worrying about it, and he was just not mentally ready for it. His take on it afterward was, 'well, one less day at the end of the 30 days.' The oncologist came in and talked to us about the chemotherapy he will start tomorrow morning. She wanted us all to be aware of what the side effects might be so we will know if something shows up to mention it to the nurses. Thinks like headaches, hair might fall out, changes with constipation or diarrhea or other stomach issues, and things like that. He will take this medicine for 30 days, then for 5 days in a row once a month for six months. This is a new drug that has been working really well. She also recommended that he go to UCSF (University of California of San Francisco) Brain Tumor Center for a second opinion. She said they are the best and know all the latest practices for his kind of tumor/cancer. She emphasized that the treatment he is getting there is the state of the art, but since the center for the whole country is in San Francisco, he should go there and have a consultation with a doctor who deals with brain tumors daily. So that is also planned for the future.

So he will be taking Temador (or something like that) plus an antibiotic to ward off PCP, a pneumonia that people on this drug tend to contract. Its given as a precaution. Oh, another side effect might be nausea, but she said that the drugs for that have so many side effects (like dizziness) that you need drugs for them.... and it starts a vicious cycle. So they tend to try to stay away from them.

Enough for now. I'm sure Jaime will correct anything I got wrong (feel free to do so Jaime). We have now moved into a new phase.... being there, allowing him to do for himself.... kind of out of the immediate crisis phase into the maintaining constant vigilance, a hands-off helping. I'm sure there will be other phases too. Keep the healing directed his way. He does believe he can beat this, and does not want to hear about statistics, etc., that might set up negative thoughts. He is sleeping well, and has sleeping pills if he needs them.

I did say enough. It is for now. My love to everyone.

Marilyn

Day Nineteen

Aloha all. Yesterday was supposed to be Chester's "day of rest," but it turned out to be quite full and a bit tiring -- and yet also quite fulfilling for him. He had visitors from as far away as the Island of Kauai and the State of Maine and handled them beautifully. On the other hand the day was marked by some emotional storm related to some of the things I wrote recently under the heading of "visitor etiquette" and also to some difficulties with behavior on the part of some of the hospital staff. Fortunately, as truly distressing as these were for Chester, he was able to breathe through them and let them go. The day was liberally punctuated with his laughter as well.

This will be a short post as I have things to accomplish today before I leave in the morning. The most important thing I have to say is that Chester is thinking of all of us almost as much as we are thinking of him. He gave me a message he wrote to post on the blog -- and his instruction was to transcribe it faithfully so you could get a real feel for how he is doing. Rather than transcribe it for you, I am going to have Jaime scan it and post it so everyone can see how well he is doing in that respect. So, bear with us for another day or two. I can also indicate to you that Chester is working on longer-term, life-long issues as well as on the immediate situation -- and is making good progress with this. It is as though the gravity of his current situation has given him the strength to break through any inhibitions he has heretofore had regarding these. When I tucked him in at about 10:00 last night, he said he felt "complete" in reference to some realizations he had made earlier in the evening.

Well, I will try to post something further either late tonight or early in the morning. In the meantime,

Aloha nui loa,
Bill

Days Seventeen and Eighteen

Aloha, all. Have to apologize for missing yesterday's post -- it was 10:00 PM by the time I got Chester tucked in on Friday night and, as a result, I slept in yesterday morning. But, the 10:00 bedtime is yet another indicator that Chester is settling into his life at Herrick. His Friday schedule was a bit lighter than the previous days -- in part, I suspect, because the initial evaluations have been completed, but also because the Team is realizing that there is no need to constantly nag Chester about applying himself -- his focus and application are fierce and their biggest problem with him is to keep up with his desires for progress. So, he was finished with the therapies by 2:30 and had a nice, long, mostly uninterrupted nap from 3:00 to 4:30. He was excited when he awoke because he was able to dream during his nap -- something the lack of which had been bothering him. Then there were some (very well-behaved, I must say) visitors and he received a belated birthday gift -- a book entitled "Squids Will Be Squids" -- from his friend Bob. This was an inspired gift because, while it is ostensibly a "children's book," the very short stories are just "twisted" enough to hold Chester's very adult attention and yet is written in short and easily managed sentences. Chester began to read from this book and was only stopped when his eyes were filled by tears of joy. He kept saying "I have found a book I can READ!" (This gift inspired me to go out yesterday and buy a copy of Edward Gorey's "Amphigorey" for him, which is along the same lines, if a bit more difficult. Still, it has many illustrations with only short, pithy text and some are written in verse, which is also a good tool for recapturing language.)

So, in the short space of only an hour or two, not one, but two major "revelations" for our boy. Later in the evening, Jaime stopped in and, for an hour and a half, it was just the three of us. Our conversation was the light sort of interplay that can only happen when three old friends, who have pretty much already hashed out most of the very deep issues with each other, get together simply because they enjoy each other's company. Later, when I had him tucked in at 10:00, Chester thanked me as he usually does, but this time specifically for the "good conversation." My feeling is that this was the third "revelation" of the day for him -- the idea that he will soon be able to have that kind of interaction and will not have to worry that his thoughts are not being adequately communicated by his "stubborn" speaking apparatus.

Yesterday, as I had been invited to dinner by friends in Oakland, I was at the hospital only from about noon till 6 but was able to sit with him through both lunch and most of dinner (Chris was there as well). It is a shame that the dining room is so small, as Chester clearly feels, and has said several times, that sitting down to eat with friends is very "civilized." His therapy schedule was again lighter than earlier in the week and many of the therapists were new to him. Far from feeling that these were the "B Team," Chester worked even harder for them in order to extract all he could from their different styles and approaches.

I have noticed that when Chester first awakens after a nap there are several minutes in which he is somewhat adrift -- not disoriented, exactly, but not fully functional. And, during those few minutes, he is apt to have forgotten things he has learned in physical therapy and is much less facile with his speech. My thought about this is that sleep has temporarily broken the "hypervigilance" he maintains throughout much of his day and it takes some time to regain his focus. I think it is good that this happens as these parts of his being need some "down time" as well. The speech therapists tell us that this kind of fluctuation in ability is common and expected and that the key to overcoming it is "repetition, repetition, repetition." But, over all, in the week I have been able to observe him I have seen nothing to dispel my intuition that we will have a vital, active and even more vibrant Chester -- and probably much sooner than anyone could have predicted -- to "set us right" about things.

Aloha nui, friends/family.
Bill

Message from Chester and Marilyn

Hi all,
I apologize for not posting this two days ago, but I blame it on menopause. But then again, I blame everything on menopause. Hey, its quite handy, and who is there to say that its not so? So, with no further delay, words from Chester:

"Now I have therapy goals in rehab, the pressure is off. Help offered is accepted. Therapy is still priority: 7:30am - 4:00pm! Recovery is still an uphill charge, although gains are made every day. Visiting is about sharing dreams, special joys, wicked humor. Cry, laugh, share tenderness with me."

As the others have mentioned, please keep visiting guidelines in mind with your visit. He does wish to see people. Be sensitive to how tired he seems, and don't allow him to overtax himself, either.

I have spent the last two days working on the poster of photo's. I didn't think to take a picture of it before I left him tonight, but I will do that next week. Photo's will still be accepted and put up on the board. But if you are unable to send one, I have a number of bsti's on there to represent you. Those who are slow with their photo's have a special orangutan to represent them. Those of you who are reptilian, snakes. Mama and sister are raccoons (especially near and dear to Chester's heart). There is even a gaggle of geese for Body Electric (birds of a feather, you know).

The poster looks wonderful and Chester loves it. Its very colorful and we put it up on the wall where he can see it easily, especially from bed. So keep the photo's coming. For those of you who don't know or don't remember, send as an attachment to buttbreath@sbcglobal.net. Or mail to me at: Marilyn Gugel, 1710 6th Ave, Apt. #1, Oakland, CA 94606. I can not return photo's, so only send copies or over the internet. Thank you so much to those who have sent them, its a very visual statement to Chester about all of us out here who are supporting him in his journey.

So, until next time, Marwyn... oops, Marilyn

Healthy Chester in Action

Dear Folks,

Just home from another action-packed day of rehabilitation. Here are some photos so you can see Healthy Chester on the go!

Next week, Chester begins his simultaneous Radiation and Chemotherapy. We are gathering information, moving through many emotions, and bracing ourselves for the additional therapies (and their effects and energetic influences).

I will write more about my week's experiences on Sunday, when I have some down time. For now, I am going to continue with my research and learning about his upcoming treatments so that I can best support him in the coming weeks. I am especially focusing my research on food-medicine. We've consistently been supplementing his hospital diet, with everything from fresh herbs to roast wild boar. Foods, herbs, teas and tinctures will play an even more important role during the coming months of radiation and chemotherapy.

Enjoy the images,

Chrys

Visiting Times Revisited

You'd think I'd know what I was talking about, wouldn't you? Being this close to the scene? But no, sorry to say. I got it wrong!

Chester has dinner from 6-7 pm (not 5-6, as I'd thought), so those of you considering a visit might want to avoid that hour - the dining room is generally tight on seating, as well as crowded (some patients need constant supervision and/or might experience some kind of eating complication, such as a swallowing problem). And, there is a bit more leeway in his afternoon schedule now as well.
I know you'll all use your best judgment when you get there as to whether or not the timing is good, as well as not to overstay and tire our fellow.
Otherwise, as Bill has been reporting, Chester continues to make awesome progress in both speech and writing (he has regained a halting ability to write in cursive, though the expression patterns are on occasion confused). Though slowed down, he has definitely returned to being the Cheeky Bugger we all know and could see disappearing over the past several months as the tumor made further impact. I gotta say "God Bless Dr Tang and his Team" for that - as well as the 99% incredible staff throughout the Alta Bates networks that we've dealt with! Both Chester and I feel he's receiving the best possible care - and that's comforting deep down when so much of your life is in the hand of professionals!
May I also take a moment to THANK those of you who've sent money for Chester's care? I deposited an additional $740 yesterday, bringing the total to $2,865.
You've been incredibly generous and we appreciate it more than words can say!
May I also ask those of you who've thought of sending a donation to Chester's Medical Expenses fund to think a little more quickly? I've just received a $1200 ambulance bill, a $1200 Emergency Room bill, and $3300 MRI bill that his insurance claims it won't cover (he has "catastrophic coverage" with a $12,500 total deductible). Thanks.
For those who might be curious, Chester's daily living expenses are taken care of, so please don't worry that he is in any danger of being short on the phone bill or whatever. None of what might be contributed will go to his personal expenses. The money we raise here is strictly for those medical bills that the insurance will not cover - and I offer a complete and open accounting of the fund to anyone who is curious. Chester decided early on that the accounting be absolutely transparent to all of you, so I'm keeping you apprised of its general shape and developing structure. Don't worry, however. I won't bore you with any more of the details than are absolutely necessary. This site is about the Cheeky One's health, not his tail-flies!
Which reminds me, I gotta get some new pictures of the Bull-Lover up here for you all.
Stay tuned! Jaime

Day Sixteen

Aloha All. Yesterday was the 16th post-operative day for Chester and it was a busy one. Along with the usual occupational therapy and speech therapy sessions, he had back-to-back half-hour physical therapy sessions in the morning. This was in order to make space in his schedule for a two-hour slot in the afternoon with radiation therapy so they could build the mask they will use in this process. The "dry run" for the radiation therapy is scheduled for next Tuesday, but this is likely to last only about a half hour. Then, they had added an extra PT session in the late afternoon (he normally has three session in a day, but they are usually spread out with plenty of time to rest in between). But when the time came Chester (wisely, I think) begged off, saying he was too tired. Instead we got him back onto the bed for a nap -- and he had about an hour of relatively unbroken sleep.

These are some observations about Chester at this point in his "adventure." Yesterday, he looked the best I have seen him since I arrived on Sunday -- because of physical improvement to be sure, but also due to a sense that, as he follows what is unfolding in front of him, he is now "getting" not only the surface meanings, but is also starting to recapture his ability to bring along with that the rich complexity of associated deeper meanings that has always been a prominent feature of his thought. Let me add here that it is my belief that he never really "lost" this faculty, but the difficulties in trying to express such subtlety were, until now, insurmountable. I am impressed, also, that he has taken the speech therapists' instruction to heart. As a result it takes him longer to say things and you can see him struggling to find the words (or more often, just how to actually SAY the words), but the expression of thought is more complex and is far more fluent than even a few days ago. This is real progress. The physical problems also continue to improve, but at a much slower rate. This is expected and is not a reason for immediate concern. I do have some anxiety though that, once Chester is discharged, the tendency to rely more heavily on the "strong" side and ignore the "weak" will reassert itself. In Herrick he is constantly reminded not to do this. This is something for us all to keep in mind once Chester is home.

These are some observations about "visitor etiquette." The visitor situation has been better over the past few days, with never more than 3 people in attendance at once that I can recall. Also, most folks have been very good about making their visit a real one, but not a taxing or tiring one. Thanks to you all. On the other hand, a few times in the past few days -- encouraged, I think, by the fact that Chester seems much more himself -- a few of us have fallen, perhaps unconsciously, into our former mode of seeking counsel from him. Let us remember that the purpose of a visit at this point is to provide support for Chester, not to unload our own stuff on him (even if that was the nature of our relationship with him in the past). This is not to say that he does not want your conversation with him to be meaningful -- he very much enjoys wrapping his mind around important issues. But my recommendation is that we keep the issues under discussion firmly grounded in the experience he is having right now. Of course it is OK to express to him the effect that what he is going though is having on ourselves -- perfectly appropriate. But his focus right now HAS to be on healing himself and he will let us know when he is ready to pass on to us some of what he has learned (and I have no doubt that he will!) So, by all means visit, but please do only with complete consciousness that your visit is for his benefit first and yours as a distant second.

Well, I have to get the leg of lamb out of the oven (yes, I offered to cook one for the Cheeky One and he, of course, accepted.) I was trying to think of foods that I know he likes but weren't likely to show up soon on a hospital menu -- so, roast leg-of-lamb and rosemary potatoes. He will be able to supplement his hospital food with these for several nights.

Aloha nui, my friends/family,
Bill

Day Fifteen

Aloha (by the way, this word means among many other things "I share with you the great, universal "Ha" or breath!), Friends and Family. This is just a quick addition to the posts Jaime and Chris have already made regarding yesterday.

First -- they took the damn staples out of Chester's head! Yay! He said there was no pain and it was all accomplished with "Ease, Elegance and Efficiency!" -- just the way he likes it. And, now he can position the head of his bed any way he pleases (when the staples were in place lower positions caused them to hurt).

Second -- after thinking about it most of the afternoon, Chester's true feelings about the radiation and chemotherapy began to come out. Yes, he "chooses" to start these therapies as soon as possible but in the back of his mind is the idea that there really is "no other choice," and, although he did not voice it, the clear implication is that he feels that the choice is between "life" and "death" and he unequivocally chooses life. At this point, I am not at all sure that this isn't a perfectly good analysis of his situation -- though I feel fairly certain that he is not attuned to the fact that treatment regimens can and do change based on the responses that are seen. The other part of this situation that "bugs" him is knowing that there is a chance that these therapies have a fair chance of "slowing down" his progress in the other therapies he is getting, primarily due to their tendency to produce fatigue. He has started to realize that he will regain his ability for speech (we were having him practice saying "velociraptor" and "tyrannosaurus rex" yesterday -- shh, don't tell the speech therapist), and likewise the occupational therapy tasks of daily living will come to him quickly. But he has also realized that standing, balancing on two feet and, eventually walking are within his grasp -- not within some achingly long stretch of time, but within a finite number of weeks -- assuming that his strength and energy remain at their current levels. It bothers him immensely that some other necessary treatment may interfere with that (and of course behind that thought is the even greater -- and perfectly appropriate -- terror that the tumor might start to grow again).

Finally, at 9:30 or so, when I tucked him in for the night, he had begun to consider that when he gets the "skinny" from the Team he is getting a dose of "cold, hard, scientific truth," and this is good information for him, but it is not, by a long shot, the whole truth. Just before we got him into bed he looked around his room, in that slow, all-seeing way that he has come to have more frequently (I have seen it at times while he is teaching), and with a deep breath gestured around the room and said "the room is starting to flow" nicely. So I will echo Chris' thought that, while visits are tiring and should be kept short, cards with a few short lines and many brightly colored images are not only welcome, but essential to "feed the flow."

With these thoughts I bid you all Aloha and must get ready to head back to Herrick.
Bill

Anal Radiance Days

Dear Circle,

I first met Chester on the set of filming the "Anal Massage for Relaxation and Pleasure" DVD. This was my first job here in the Bay Area, working alongside Joseph Kramer. I spent hundreds of hours editing the video, watching Chester's hands in motion. This teaching was what launched me so fully into this Work, and anal massage continues to be my "favorite" offering. Chester's CMT course gave me confidence to be with the entire body, and my Sexological Bodywork training has grounded the body of my work in the Pelvis. Still, the AssWhole is my Center, and offering anal massage is one of my most savored activities.

To offer Chester daily support and assistance, I have cleared my schedule of most professional and personal commitments. Joseph and Jane at the Erospirit office have been in wonderful support of this "indefinite leave" as I focus my time with Chester. My lovers and friends have been generous and patient with me. My landlord and grocer, however, are not so understanding. So to pay the bills and support myself through this time, I am offering a weekly day of massage. These days are also a prayer to Chester, and help circulate the energy we are generating through the week back out into the community. May we all be Radiant!

“Open Your Ass. Your Heart and Mind Will Follow”
–Chester Mainard

Anal Radiance Days
Tuesdays September 20, and 27, October 11, 18 and 25

Sessions of full body touch, breath and presence,
focusing on your anal relaxation, pleasure, and radiance.

2 hours sessions $125- $200 donation

Sessions available all day and evening. Sessions will be held in Chester's studio in the Berkeley hills.

All funds will be used to support myself and my daily assistance
of Chester during his rehabilitation processes.

Please email to schedule your session or for more information:
openhands@mac.com

Chrys Curtis-Fawley

Certified Sexological Bodyworker
CMT: Chester Mainard Trained

Chester's Snail Mail Address

Dear Friends,

We continue on this incredible journey, all of us together.

Chester continues to thrive, each day opening up more motion, his speech becoming more fluent, his fierce energy moving him through a rigorous day of rehabilitation.

The more research I do about glioblastomas, the more I realize what Chester is sitting with right now, the more miraculous the journey feels. I have paid attention that the three metaphors that come up most often in the glioblastoma literature is "star", "spider" and "octopus". My own visualizations have been richly informed by my medical research, and has deepened my respect for what Chester is reckoning with.

Chester is able to read your cards and letters. He has had to refine his economy of language, and I suggest you practice this in your writing to him- he can read on paragraph better than a whole page! And humor, images of animals, and other blessings have been well received and much appreciated!

Please send all letters, photos, etc to:

Chester Mainard
Room 5114
Alta Bates Hospital Herrick Campus
2001 Dwight Way, Berkeley, CA 94704

In touch,

Chrys

Best Times for Visiting Chester

The flurry of activities continues on this end.
We met with Chester's Radiologist this morning, who explained the protocol for the next step in his treatment - radiation and chemo.
A special "mask" will be constructed tomorrow morning, using a prop right out of "The Deep" - a white-plasticine, thick-fishnet kind of deal, with the vague outlines of a human face - that will warm with his skin and conform to his head's unique contours, over which a more substantial mask will be built. This will ensure that his head is placed in the exact same position for each treatment. Intersecting beams will focus themselves in the brain cavity that held the tumor, plus a 3cm border/surround. This should extinguish whatever cancerous tissues might still be lurking (or, worse, re-forming).
In addition to daily radiative sessions of 2-3 minutes (M-F) for 6 weeks, Chester'll be taking an oral chemotherapy, Temador, that concentrates the effects of the radiation synergistically. It is "the gold standard" as far as treatment goes for glioblastoma, allopathically speaking.
After questions were answered, Chester agreed enthusiastically to start the process. "Full Speed Ahead" (... you know terriers!)
Since the radiation/chemo will begin at the start of next week, those of you who want and are able to make short visits might considering doing so now. The best visiting hours are 6-8pm, tonight through Saturday, since Chester's busy with therapies and dinner up till then. Sunday is his "day of rest" and fairly unstructured (at this moment, at any rate), so that's a possibility as well.
I say this only because none of us knows just how Chester will fare with this treatment. In most cases, it is a relatively easy process. Unless there are complications. None of which can be predicted... so "get him while the getting's good," as they used to say in some land that time forgot.
BTW, I wanted to add a footnote to yesterday. Auggie's visit last night brought Chester's blood pressure down 12 points from where it'd been that afternoon! Now that's good medicine!! LOL

Day Fourteen

Aloha from Berkeley, again! Yesterday was a day full of trials, but also triumphs, for Chester. Both have arisen from the fact that the staff at Herrick are just getting to know our Chester -- they already like him (of course) -- but they have been intent on their formal evaluation process and some of them haven't connected the results of that to Chester as a person. On the other hand, some very important people on the team have seen Chester, the person -- primarily the neuropsychiatrist. The good news is that the Team met yesterday morning and decided that there is absolutely no impairment of Chester's cognitive functions. The corollary is that, as this comes to be understood by the regular staff that helps Chester with activities of daily living, they will start to pay far more attention to his stated wishes (and already have). As a result, when I tucked Our Boy into bed at about 9:30 last night he summed the day up as "full, but good!"

The other good news that came out of the morning conference is that some short term goals have been set with an eye toward Chester's eventual discharge to his home. They want him to be independent in transferring himself from bed to the wheelchair and from the chair to the toilet and vice-versa. They want him to be able to walk with stand-by assistance only. (There was one other that I cannot at present remember -- the curse of being "able bodied," I guess!) Physical therapy is primarily working on the walking and transfer to and from the chair (though occupational therapy also works on the transfer skills), and Jacci, Chester's PT, can already tell that this poses no serious problems. It is only a matter of time and hard work. Occupational therapy works primarily on self-care tasks -- eating, dressing, cooking, using the phone -- all very good stuff and, fortunately, Chester understands that even though he could probably figure out how to do these things by himself, he might as well use every tool they hand him. Fortunately his speech continues to clear -- so quickly that it is almost astounding. Also some of his thoughts now flow easily into his speech -- simple things right now, like "Thank you!" after a service has been rendered, but the complexity of his speech is rapidly catching up with that of his thought (which hasn't changed in this respect one whit).

The frustrations tend to be related to Chester's sense that "I am (my wishes are) not being understood by the staff." Sometimes this is in terms of having to wait for something -- for instance, he was not happy that the Team met in the middle of the morning but no one came to talk to him about the result until 4 PM. Some relate more to the idea that "they are not seeing me." A very clear instance of this is the fact that the initial assessments of where Chester is right now in terms of those short term goals, in my opinion, far underestimate what his level of function actually is. (Now, I can think of many political and economic reasons for the Team to say this, all having little or nothing to do with Chester, but to him that is completely unacceptable!)

Here is an example from yesterday that combines both of these frustrations. After supper I went back to the room with Chester and after a while he rang the front desk AS INSTRUCTED for assistance in getting onto the toilet. When, after at least 25 minutes, no one appeared, I helped him with this task and really did little or nothing other than maneuver the wheelchair out of the way once he was "enthroned." Then we repeated the sequence in reverse and Chester joked that when someone did appear he would simply say "Too late. Pooped my pants. Clean it up!" As it happened no one did appear until about an hour after we did our thing, and then it was to take his blood pressure and give him some medication. Again the admonition was to BE SURE TO CALL FOR ASSISTANCE WHEN YOU WANT TO GET INTO BED. Well, he was having none of that and got himself into bed in much the same manner -- and undressed with only minimal help from me. He only called for the nurse when he discovered that he didn't have the towels he usually places under his right hand and arm for support. The nurse very graciously brought them for him and did not question him about brushing his teeth (he did), getting on the toilet or getting into bed by himself. To me this is a clear signal that far from being a case of neglect, it is their way of telling how much he can do for himself. I had no trouble colluding with this "wayward" behavior because I have not a doubt in my mind that he will be certified independent in these activities by the time I leave to return to Maui next Tuesday.

There was an unfortunate concurrence of visitors just before supper yesterday (seven of us) -- but again Chester graciously understood that this sometimes happens. Large groups of people are still very tiring for him -- though he did very well. But, they called him to supper and the others opted to go about their lives while I sat through supper with him -- not really talking, just being together -- he likes the company, but also likes to concentrate on eating! Then, after we got him to the john and his teeth brushed and I had given him a hand massage in both hands (and learned that his right upper and lower extremities are no longer numb or hypersensitive -- just comfortable), he had a surprise visitor -- Augie, his fox terrier friend from home (and Jaime, of course)! So, even after a very busy and emotionally trying day, his blood pressure was good, his blood sugar was good, and with getting to bed about an hour and a half after visiting hours were over, I am in good hopes that he had a fair night's sleep.

Well, I have to get going in order to be at Herrick in time to listen in on the consultation with the radiation oncologist this morning (there will be several others there if I don't make it in time). I know that everyone wants to know as much about how Chester is doing and I will try to be as descriptive as I can so long as I am here on the front lines.

Aloha nui loa e malama pono,
Bill

Day Thirteen

Aloha from Berkeley! My "red-eye" flight from Maui Saturday night (Sunday morning) after a full day of "tidying up my practice, etc." was nothing special, but it is great to be here and to be able to interact with Chester first hand. To put you all at ease, I can verify that our friend is doing a truly amazing job in this recovery phase. Unlike the majority of folks who have gone through what Chester has, he is approaching it with the attitude of an adult human being who knows what sorts of things are likely consequences and is willing to work with, through and around them. You can almost see him "tiptoeing around" things that he knows he should know and once knew almost automatically, yet still arrive at something that very well expresses what he is thinking. His speech is sometimes unclear -- though that seems to improve from minute to minute -- but the thought behind them is always crystal. An instance is that the neuropsychologist assigned to his team warned him about emotional lability (by the way, Chester is using this kind of language -- "emotional lability" -- stumbling occasionally because there are so many syllables to say, but using them appropriately nonetheless) and that he might find himself laughing or crying inappropriately. Chester pointed out that, yes, he has laughed a lot and also cried a lot, and with far less self-censure, but at no time has the behavior ever been "inappropriate," either to the emotion he was feeling at the time or to the situation in which he was feeling it. And, you know, he is one hundred percent right!

With respect to his leg and arm -- it is really too early to say. At least from the standpoint of objective, cold, hard observation of their function. His right leg does support him -- but it takes an effort of will and concentration. He has some movement in his hand and arm and no sign of the kind of paralysis one sees in stroke victims. But there is muscle wasting (mild so far) and a danger of joints becoming stiff if he doesn't use them. On the other hand, there are new developments with each limb on a daily basis. It is just too early to make any predictions here.

So, from the "hard science" standpoint -- the good news is that our Chester is still very much our Chester, the difficult news is that it is too early to make any "rational" predictions about how much physical function will return.

But -- from the "woo-woo" part of me comes an entirely different story. That side of me senses powerful forces at work in Chester -- the more so now that I have been able to lay my hands on his -- and the overwhelming sense I get is of a being who knows what his functions and abilities are supposed to be, and is in the process of putting all of this back together (or even, putting it together in the first place). His physical brain has not yet rewired itself to recognize its new relationship with the right half of his body (this takes time), but his psyche knows its own symmetry very well indeed, and the physical body will have no choice but to conform to that understanding in the end.

Well, it is late tonight, even by Maui standards and even though I have much more to say I will save it for another night.

Aloha nui loa,
Bill

Thanks, matey

I wanted to share with you all a story I was recently reminded of re Chester's intuitive knowledge and insight of the human body, in relation to my father. It was back in September 1998 and we (Chester and I) decided to meet up in New Zealand so he could celebrate his birthday in the country he has a deep affinity for and I could also visit my family. I flew from Australia and he from SF and we met up at my parent's farm for a few days before making the10 hour road trip, to the bottom of the North Island, (and we all know how he loves getting to the bottom of things!) to get to the Wiarapa where he had lived previously and has close friends (hi Roger, Murray et al). It is always a joy to see my family again, and they love Chester's cheeky benevelent behaviour and it's a joy to watch him put on his blue over-alls and become 'farm boy'. On this trip, however, Chester made a couple of comments to me about how my father seemed energetically 'heavier' in his body, he seemed denser than normal and Chester had some concern about dads physical health. I had not noticed until he had mentioned it, but at the time I did not feel too alarmed. After about 5 days with the family, we said our goodbyes to my many siblings, mum and dad and set off on our car adventure, further down under.

About a week later while we were staying with Roger on the farm I started feeling as though I hadn't spent enough time with my family and had a niggling desire to make the trip back while I was still in NZ. Chester again shared with me his concern about my father and so I made the decision to drive back again, leaving Chester and his blue overalls in his element tending to the many farm animals. He especially loved feeding the piggy and having deep conversations with the donkey, and had to avoid, on several occasions, being attacked by an ostrich bull in rutting season. I suspect his favourite though was the 'cocky' old rooster, who had to fight with his even cockier young son over the clucky hens, we would spend hours on the veranda in fits of laughter at the exploits and dramas of the serious business of chook behaviour, dominance and pride of the 'old man chook'. Anyway I drove all day and made it back to my parent's place in record time, and felt much relieved at having an extra week with my family, spending some quality time with my father, talking to him about how grateful I was to have him as my father and sharing my love for him (he was not someone who was able to speak easily about his feelings). That extra time with dad was the closest sharing we ever had together and meant a lot to the both of us. After a week I bid my goodbyes with a big hug to everyone, and especially to dad. I felt a lot more at ease and settled when I arrived back to join up