Update from Chester, Barbara and Laura

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 to you all.

Love,
Barbara

Hello from Marilyn

Hi there everyone in Chesterville,
I had promised Jaime that I'd do a post, and I'm only a week late. That is quick for me, my sister is still waiting for her birthday card (May birth). I've been thinking about what to tell you, and I feel that I should give the "State of the Chester Address." There has been a lot going on here recently, and its had a profound impact on Chester.

The big question is: Can we find people to continue to come stay with Chester? Not being able to find someone to be there the weekend that Laura had to be away was a real wake up call for all of us. When Jaime had his reaction, I realized that we had not been addressing the situation of long-term care. I don't know about you, but I really did not think beyond the "yea, he is surviving" and then moving into the "yea, he is thriving" mentality. One of the "states" of Chester is that he does not have the ability to think into the future for himself. I realize now (more clearly in the last couple of weeks that before) that it must be brought to his attention so that he can start making choices for himself, especially as to how his life is taking shape. It is very difficult for him to make decisions, especially quick decisions. It moves him into confusion. Its all part of the brain disfunction that he is now struggling with on a daily basis. Communication is just part of it. He must be given time.

Communication creates a state of frustration in Chester. He knows what he wants to say, but getting it out sometimes takes time... And patience... On both our parts. My favorite game is to take what I think he is trying to say and make it into a funny sentence. He laughs most of the time... The occasional grump is there... Usually on days where things have not gone smoothly for him, and his frustration level is high. Or when he is not feeling good. He has been experiencing a lot of pain from hemorrhoids, and as anyone who has experienced constant pain can tell you, it can take over your life. He has been dealing with it well. He is a very genial presence most of the time, despite the pain. (Just for you to notice, I did not make any comments about 'pains in the ass.')

The one person who has been thinking about the future for him is his sister Misty Dawn. Dawn and their mother live in Missouri, and she has been looking into having a small bungalow (prefab barn) built on their property. He would have his own place, they would be able to care for him, but he would also have privacy. But that all takes time to get it set into reality. This is a major possibility, along with others. A Nursing Home. Last resort only, and he knows that he would die if put in one. There is a wide gamete of possibilities, and I ask you to let us know any you might think, dream, or manifest in your heart/mind/spirit.

The time I spend with Chester is trying to find out what he might need/want, and making him laugh. He brings out the best in me and the worst in me. The mixture creates fun and laughter. He is still a healer. He is still naughty. He is aware of his situation being out of his control. He needs to rely on other for his daily needs. And this for a man who was extremely independent. He worries about having seizures, so has been limiting his excursions into public. He can not stand for his right side (nor right shoulder) to be touched. He gets strange sensations when touched in those areas. He loves tapioca and rice pudding. He no longer can tolerate spicy food or really cold food. His favorite food right now is a combination of mashed potatoes, celery heart and parsnips, yes, all mashed together (try it, you'll like it). He just finished his first round of chemo since stopping the drugs so his head wound could heal. I think he will have another round (5 days) and then get another MRI.

That is all I can think of at the moment. If it seems a bit scattered, well that is the 'state' of Marilyn right now. I always blame everything on menopause, cause I can, so that is my excuse. I hope this finds everyone well and in good spirits. Our spirits are connected through Chester. My love goes out to you, those I know and those who I've yet to meet. Be well. Marilyn

July 4th - Afternoon Party

Hello everyone, and a Happy Fourth to our US contingent. Jaime here (at Chester's) with a fuller update of the news of the past week.
Chester met with his neuro-oncologist, Dr Chang at UCSF, a week ago today for a comparison of his most recent MRI with that of his last one (April) and got GREAT news. Seems that the tumor is showing only minimal growth in the intervening months - which is especially good, considering that he's had no chemo in that time (we were waiting for the infection in the bone-flap to clear up, which it has - though Chester must continue the anti-biotic course to keep it under control). Dr Chang was particularly delighted at this recent meeting, considering how very concerned she'd been at the prior appointment (again, due to the infection). Her recommend was to go ahead with the latest round of Temodar - and another round next month - to be followed up with a fresh MRI and another "comparison-meeting" in September.
Today is day 3 of Chester's current chemo round and he proclaims that he's "doing very well" with it. He is, in fact, chopping bok choy at the moment, making his favorite "bok choy & fennell" salad - celebrating the holiday dressed in bright orange t-shirt and monkey-emblazoned pj-pants. The side effects have been minimal - a touch of diarrhea for which he downs homemade blackberry shakes as antidote, and, happily, no stomach upset whatsoever!
Chester wanted me to explain that his recent posts take quite a bit of effort - and he apologizes for their being brief and slightly muddled in context. Writing a few sentences that take you or I a couple of seconds takes our boy several minutes, sometimes stretching into hours, of effort. But, as he's progressing in self-expression, he's also making good progress with the special "Frog Pad" one-handed keyboard given to him by Xo - so there are several levels of satisfaction to be gleaned from his various efforts. (And the rest of us can help fill in the "blank spots" for y'all).
The Cheeky One did have a small seizure one evening last week... It lasted for about 2 minutes, right after he'd hung up from having a laugh-fest with Marilyn. He didn't black out, which is good - just "rode" it safely to its conclusion in his wheelchair, which he'd managed to wedge between his bed and massage table for additional stability. Thankfully, he's getting more comfortable with these - if one can express it like that ... seizure cannot be a particularly "happy" experience - and knows that they're usually of short duration and kept pretty much in check from the two meds he's taking (Keppra & Trileptal). His blood pressure is quite good these days (average 125/80), and the diuretic is keeping the swelling in his right leg to a minimum... So, we're having a good run of it at the moment.
On the other track - his companion care - we are still faced with the decision of whether to move into a nursing home in early August, or for him to return to Missouri where his family can care for him on a daily basis. Neither is a particularly satisfactory development, but we've got to deal with the reality of his having no one to be his companion after the first week in August. (While I've been able to get some much-needed rest since my last posts, those of us who've been his primary care team are flagging and needing reprieve from the responsibility... It's been over a year since this began - his first facial twitches began April 15 of last year and we're rapidly approaching the first anniversary of his tumor-ectomy on Aug 30.) I personally HATE the fact that we're not all able to be super-human for as long as it might take, but age and reality have a way of saying "tough noogies" about not liking this. So - before any of us go "nose-down" from the demand - we need to put other options in place... and y'all are now updated on that front. (We have two different full-care facilities in Berkeley to check out as possibilities for his relocation and will keep you all updated on that front as info develops)...
Well, Chester's party is taking off - guests arriving and laughs beginning - so I'll sign off. Hope your week's off to a grand start - and, if you're celebrating the holiday - hope it's safe and enjoyable! xox Jaime