Wednesday, August 30, 2006

One Wild Year

Dear Friends,

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

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

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

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

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

Friday, August 25, 2006

Fatigue, Frustration and Fun

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

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

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

In breath,
Bean

Wednesday, August 23, 2006

Companion Update

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

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

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

Future Plans - WE NEED YOUR HELP!

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

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

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

WE NEED A COMPANION!!

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

Tuesday, August 22, 2006

Farm Fresh Food

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

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

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

Saturday, August 19, 2006

Reflections

Aloha, All:

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

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

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

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

Aloha nui,
Bill

Friday, August 18, 2006

Chemo & companions


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

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

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

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

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

Wednesday, August 16, 2006

Hydro Therapy

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

Friday, August 11, 2006

A Call for a COMPANION!

Hey everyone -

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

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

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

WE REALLY NEED YOUR HELP!

Thanks in advance! xox Jaime

Thursday, August 10, 2006

Ultrasound Sound

Aloha All!

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

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

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

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

Aloha nui loa,
Bill

Monday, August 07, 2006

Uhm... "not quite"

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

Wednesday, August 02, 2006

Message From Barbara

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

Hello Everyone,This is Barbara Carrellas.

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

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

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

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

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

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

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

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

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

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

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

Love,

Barbara