Family Care

For the past few days, Chester has been at home with his brother and sister, a true family reunion. On Monday morning I woke up with a terrible stomach flu (which my lover had also developed), and the simple routine of helping Chester get dressed felt like a marathon event. After trying to sleep it off for a few hours, it became clear that it wasn't going to pass that easily, so Chester sent me home. His immune system is compromised and his body has more than enough work to do as is, so I took my germs and cleared out. Dawn and Dan agreed to help take care of Chester, and so it was- the three Mainard siblings together taking exquisite care of one another. By all reports, it has been a beautiful week of family togetherness. I wish I had more details for y'all, but I've been asleep for four days straight!

I just checked in with the Mainard kids on the phone, and everything was going very well. They've been taking great care of one another, sharing lots of heartful time together, and having too much fun. Dawn reports that they were up until 1 am last night "giggling like drunk girls", and then up at 4 am for more laughter! Their time together has allowed them to do lots of reconnection and healing, which I sense was significantly deepened by the circumstance of being alone as a family. I am grateful that the divine timing of it all allowed us all this week- they were given this chance to be together as a family caring for one another, sharing so fully with one another, and I was given four days to hibernate and heal, resting and recharging my body after so many months of borderline exhaustion.

Dawn will be writing something up for the blog in the coming days, as well as hopefully loading up some of the "hundreds" of pictures she has taken this week. In the coming days, we will also be hearing from Chester about his decision around the bone flap procedure, and possibly scheduling that surgery. So stay tuned, as the Healthy Chester story continues to unfold.

May our strength grow with the waxing moon,

Chrys

Three Mainards

Dan and Dawn Mainard arrived in town on Friday afternoon, and have been having a wonderful visit so far. Being with the three Mainard siblings is a total riot- imagine all the sassiness, wisdom and wit of Chester, multiplied exponentially by three, and then amplified through the lens of a sibling reunion. Whew!

Our weekend has been full of laughs, good food, and heaps of "critter talk". I so love Missouri folk- at least Mainard Missouri folk! Chester's huge heart, soulful communication and wicked humor all seem to be family traits. It is such a pleasure to have his family with us and to be witness to their re-connection. The love and care between all three siblings is palpable, and seems to deepen as they settle in with one another. Dawn is a delight- joyous and kind, full of love for Chester and all other furry beings, and with much embodied wisdom of her own. Dan is a gentle giant- friendly and fiery, arriving bearing gifts of meat and fish, his eyes ablaze with curiosity and knowledge.

I think it appropriate that their visit falls at this pivotal time. This week I'll finish packing up the studio (each of the hundreds of crystals and stones dutifully cradled, wrapped and transported down the hill) and complete the move of Chester's belongings down from Forest Lane. Meanwhile, Chester will be doing some important discernment about his future medical intervention. There is the feeling of a gathering- the gathering of all of Chester's physical belongings around him, the gathering of his family, the gathering of strength and courage, fear and trepidation, support and love. With his blood family and friend family gathered together, it is my hope that Chester (and all of us) will be able to transition into this next phase of his journey. May we move into the unknown with brazen curiosity and gentle courage, guided by the wisdom of our flesh.

Slacker Girl

Well, its been a while since writing here, and I promised Chester, his mama, and his sister-in-law Nancy that I would put up their photo's almost a month ago, at the end of their visit. Chester loved that visit, and it was really hard on him (and on mama too) when it came time for her to leave. But they did have a wonderful visit.

I also got a photo of Chester and Bean yesterday. There is an X-rated version, but you have to talk to Bean about that one.

I'm sure you will hear more from someone later, after all the doctor visits scheduled today.

Marilyn
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Well, it seem that I can't get the photo's to load. I will have to play with the images, they may be too large. Hopefully, photo's of Chester, his mama, Nancy, and Bean will show up soon.

Growing Tumor, Tumor Humor

Dear Ones,

I sit now at my home in San Francisco. Bean, a dear friend/student/companion arrived yesterday from up north to spend over a week with Chester. This is her second visit, as she spent a week with Chester before the breath class in January. After getting her settled in, I climbed on the BART, crossed the Bay and arrived home. All of a sudden, I find myself alone - my vigilance begins to drop, I weep for hours, cook a huge chicken roast dinner for two and relax. At midnight, my roomate (quietly) places a dish in the sink and the noise has me awake and out of bed --what happened, what needs to be done, is Chester ok-- and it takes me a few minutes to realize where i am and that i have nothing to do but get back in bed and breathe myself to sleep.

The past ten days were quite a journey with Chester. Long days spent packing his apartment, touching each of his belongings with care and curiosity. Gathering his heavy collections- crystals, stones, bones, books, photos, teachings, dishes, goblets, tools, baubles, sarongs, saris and scrolls -emptying his home into the car and delivering loads of his life to Chester. Stacking things neatly in the companion bedroom so as to keep the path clear for Chester to weave through the space, his body and mind dedicated to the task of sorting, revisiting, reuniting and recycling. Emotions are running fiercely together through the space- each object bringing a quiver or quake of energy with it into the apartment. Chester watches me engaged in the labor of love and wants to help me carry the heavy boxes. Instead, I open a box onto the massage table and he begins sifting through it, delivering objects into bags marked "Friends" "Thrift" and "Trash", and a box to "KEEP".




I bring the shredder and filing cabinets down the hill. On my next trip up, Chester builds a box. He discovered that he needed a box to hold the shredded paper, and finds a flattened box outside. He becomes determined to build the damn box, and when I come home there is a huge DELL box, thoroughly taped together with packing tape (a long horizontal row of ragged, teeth-marked strips of tape, but sturdy!), half full of white and yellow shards of paper, his taxes from 1992 and hundreds of other pages. He has a charge from the accomplishment, and a fatigue from the shredding, shredding, shredding. At the end of the day, we both rest in the afterglow of a productive day and weary determination of the task at hand.

We keep ourselves laughing and communicating clearly, refining the art of Tumor Humor- as embodied in this image of Chester, wearing a hat that was within a big bin of some of Chester's most treasured temple objects- wood smoothed by hundreds of butt massages, cloth saturated in magic, the tools of his rituals over the many years-





The week was made all the richer by a wonderful candlelight sushi feast with Annie Sprinkle. She is busy with her triumphant revival after a nine month breast cancer ballet. She and her lover Beth Stephens have been very busy living, creating, and performing art together (check out www.loveartlab.com), so it was a treasured gift to get her over for an intimate dinner date. Here are pictures from Chester and Annie together- bald and radiant in the mid-cancer October sushi dinner, and again this past Monday.





The week ended with a visit to Dr. Tang, the neurosurgeon who has been our primary "head doctor". He read the MRI report, looked at the new films and compared them with those of December, and told us in no uncertain terms that there is new tumor growth at the site of the primary tumor, and that it is "about 10-20%" regrowth. He then proceeded to launch into the myriad of treatment options that Chester can now choose from, recommending medical intervention "soon". These treatment options are both surgical or non-surgical. The surgical options include things like opening Chester's head back up, removing whatever tumor growth is apparent, and laying down chemotherapy "wafers" or inserting a "balloon" that is filled with radiation therapy, making Chester "radioactive" for a three to five day hospital stay. The non- surgical options include an intense radiation treatment where they zap a trench around the tumor site, or trying to switch chemotherapy treatments in the hopes that a new kind of chemo will halt the growth. Dr. Tang said there were "up to 30 treatment options to choose from, and there are 30 because there are no clear winners". He guessed that any one of the options would hold a possible "10-20% efficacy rate" or "no effect at all". Dr. Tang is a gentle and kind man, and a straight-shooter. I sense that it is this combination that allows him to meet with people every day who have endangering growth or injury in the brain, and to do so with a peacefullness and assuring presence. He gave us a sketch of three treatment options he would recommend (the balloon, new chemo, or the intense radiation) and recommended that we talk to Dr.Chang, the brain tumor expert at UCSF. Jaime was making that appointment yesterday afternoon immediately after we returned home. We will discuss the treatment she recommends, do lots of our own research and discerning and witnessing, and Chester will be making some huge decisions about the potential medical interventions that are available to him. We left the appointment, both sobered and moved by the information we had just received. I grabbed a sprig of jasmine from the plant draped over the fence, and as we drove to the Alta Bates thrift store (benefiting the hospital where Chester has been receiving treament) to drop off a load of Chester's belongings, we talked about the additional medical intervention option that Dr. Tang hadn't mentioned- none. We talked about carefully weighing potential benefits and risks of any surgery or treatment- would undergoing a resection risk all of the mobility and speech that he has been regaining? (Dr Tang: "potentially"). Would a new chemo agent make him naseuous and dizzy? We drove in quiet conversation, and I assured him that I would support him through this, no matter what we face. An image from his tarot reading with Annie returned- that of surfing, of "riding the waves", which we will continue to do with our surfing mates: Grace and Flo, Prudence and Joy.

After dropping off the boxes of thrift items (though only after rescuing the bag of stuffed animals- a gorilla, three frogs, a raccoon hand puppet. . .) we decided that intervention certainly shall include frequent sushi-treatment, beginning immediately. So I ran into the fish market for half a pound of ahi tuna, red and quivering with brain food goodness and tender pleasures.

Keep, Gift, Donate, Trash

Whew.

It has been a very busy week. Our days have been full with the task of moving out of Chester's apartment up at Forest Lane. Jaime has been hard at work preparing the house for sale, which includes painting all the walls. The house must be ready for open houses starting April 1 so we are digging into the enormous task of emptying it out. For the past five days, I've been making trips up to Forest Lane and moving boxes and furniture up to the garage, emptying out drawers and closets. Discovering huge amounts of Chester's belongings in every nook in the apartment. We haven't yet touched the massage studio. Monday and Tuesday, Chester and I will be going up together and once the apartment is empty we will then begin closing up the massage space.

The whole project is an incredible dive into Chester's life. Piles of witty and froggy t-shirts. Huge stacks of books, from bodywork guides to sci-fi and fantasy paperbacks. Boxes of cards, all signed by dozens of grateful students at the end of classes. Crystals and rocks, bones and feathers. Toys and Treasures, Critters and Dieties. Every box I open has Chester all over it- even the most seemingly mundane objects are charged and curious resonances abound. And with every object we come across, Chester must ask the question; keep, gift away, donate, or trash? Our space here at the Bakery Loft is limited- I am busy trying to work storage magic and maximize the space we do have. Chester's abilities and activities have also changed, making some very personal belongings not so practical to hold onto. So we are taking it one box at a time, and will be in the process of sorting belongings for many weeks to come, I reckon. Already Chester has gifted away many items: Big mirrors and a few bookshelves are now at Joseph Kramer's office/classroom, where they will be put to work in service to continuing the teaching. Books are starting to find their way into friend's hands. And Chester is beginning to put into practice the "Living Bequest"- passing on some of his most personal and sacred belongings. This process will unfold into the coming months, and I am very grateful that he can make conscious choices about these gifts.

With all of the moving, Chester has been spending a fair amount of time alone. While I drive up to Forest Lane and pack and haul boxes, he has been spending time here at the loft. I set up a "sorting station" for him and he spends several hours sifting through his boxes. Today he spent over five hours alone while I went to the city to get my ear lobes pierced. These stretches of time alone are a good indication of his level of independance, and I feel mostly comfortable with trusting his safety and well-being while alone. There is comfort in having friends in the building and neighborhood who could be called if Chester needed assistance.

On Friday Chester finished his third intensive does of chemotherapy. Again, fatigue was the biggest side-effect of the drugs, and Chester was pretty sleepy all week, with short periods of fiestiness and wicked humor mixed in to keep us all on our toes. But this weekend he rallied back and was quite productive and active, sorting through boxes and helping me rearrange the apartment to accomodate the new additions to the home. It feels good to have more of his belongings here living with us. Dragonflies in the bathroom, tapestries on the walls, big crystals grounding us, making it home.

Marching Forward

I arrived back at Chester's loft this morning after four nights away. These short periods away always bring lots of perspective, both on my own experience of being with Chester through this journey as well as a fresh perspective on Chester's health itself. When I arrived this morning, Chester looked wonderfully radiant and healthy. For day two of his intensive chemotherapy course, he looked full of energy and had a heightened sense of humor (even for Chester it was high). A few periods of brief fatigue yesterday, but overall the chemotherapy continues to agree with him (as his friend Barbara wrote to Chester last month "Leave it to you to be so weird that chemo AGREES WITH YOU!!!")

After settling in with Chester and getting updated on the weekend's details from Gil, I decided to make a trip to the bakery to get some breakfast scones. On my way out of Chester's gated parking lot, I got into a little car bang-up. I was following a contractor's truck out of the gate, and after he pulled forward he then threw his truck into reverse to park on the street right next to the gate, and I had already rolled forward enough to get hit. No one was hurt (always the important thing), but the right front bumper of Chester's car is pretty banged up. The car is driveable, also important, so we haven't decided if we are going to get the needed repairs yet or to file a claim or not or what. But that was a piece of excitement that we didn't need in our day. Jaime arrived just as I was standing on the curb waiting for the police officer and exchanging information with the other driver. Sigh. I ended up walking to the bakery a little later to help clear the adrenaline from my system.

Today was supposed to be the last day of Chester's Rehab Without Walls therapies. But when Jennie the speech therapist arrived, she told us that insurance had agreed on one more week of coverage (yet another little gift from the insurance allies). But because of the therapist's schedules, both of the additional sessions are scheduled for tomorrow, making the "extra week" really an "extra day". But we'll take whatever assistance we can get. Chester is specifically working with them now on maximizing comfort and safety with his new bed, which has been very comfortable for him but still he still has some strategies to master. As Chester's time with his rehab therapists comes to a close, I am reminded of how much great work they have offered Chester, and how important they have been as allies in this process. There was all of the core work of assisting Chester in learning to walk, articulate and communicate clearly, take care of his right arm, ambulate safely in the home, and maintain and build strength and flexibility in this changed body of his. They also offered us countless strategies for thinking creatively and problem-solving all the new complexities of moving around in the world in a hemiplegic body. From all the velcro straps and non-slip padding devices to finding surfaces to stretch out Chester's right hand while out in the community, the Rehab Without Walls crew offered so much support and assistance during the past five months. This was a critical learning phase not only for Chester but for his "companion crew" as well. With our strong bodywork foundation, we were able to learn so much and deepen our sensitivity to how to best support Chester's body as it regenerates and finds new balance. I am proud of our work- immensely proud of Chester for his dedication and incredible spirit since day one, and proud of all the friends who have "been with" his body so well. After six months, his arm is still supple and relaxed and has not locked into a retracted position. After six months, he is walking with confidence and trust. After six months, he has only had a few minor falls and no major injuries. All major victories in my mind.

We now shift attention to the task of moving from Forest Lane, packing up and making decisions on all of Chester's belongings. We were due to start the move tomorrow, but Chester will be doing his two therapy sessions instead and then a friend is bringing dinner. But I've already begun the process from this end, organizing the space so we can fit more stuff down here and maximize the storage potential of this apartment.

Stay tuned for more information on informal day classes and other opportunities to spend time and learn with Chester- we are still figuring out the details but will let you all know as soon as possible! And my digital camera is back up and working so look out for more current pictures coming soon!

The Latest News

Today we spent the morning with Chester's two oncologists, who gave us the report on the most recent MRI and checked in with Chester's overall progress. The results? That overall, Chester is doing wonderfully- his physical rehabilitation continues to go well, his speech is improving and he feel pretty good most days. Everyone that has seen him recently is commenting on how bright eyed and bushy tailed he is looking.

All of that said, the MRI report had some bad news. His primary tumor seems to be growing again. The December MRI did not show any signs of growth, but three month later it is starting to increase in size. Not much, which is good- the site has only increased in size about half a centimeter. This is still in the area where he had the tumor removed in August and where the radiation was focused, so they are unable to determine just how much of the white matter is swelling or scar tissue, and what is new tumor growth. But there does seem to be some additional infiltration of the tumor mass.

While it is never easy to receive news that a tumor is growing in your brain, Chester took it in stride. He registered shock, sadness, and now seems to be moving forward with the same determination and will to live as he has had for the past six months. We both agreed that how he feels on a day to day basis is our most important gauge of his wellbeing. We will be getting another MRI in three months and consulting with the experts at UCSF to see if there is any more treatment to consider. Meanwhile, he will begin his next chemotherapy round on Monday and will continue to envision predators gobbling up the tumor cells. We need those panthers to be more fierce than ever, swift and sure in their kill, precise and focused in their mission. Please join us in continuing to hold the intention of "no growth, slow growth" for his brain cancer cells.

We returned from the hospital to find his new bed delivered. Another generous gift from Jaime, a mechanical massaging bed! The mechanical lift will help him keep his legs elevated in the night and can also help him sit up with less effort. The bed is super comfortable and has a nice purring massage feature as well. Chester's first night sleeping on it will be the true test, but we all sense that it will be a big improvement over his futon that he has slept on for the past four months.

I am scurrying around trying to get the house organized again (after our crazy shifting of everything this morning to make room for the new bed while squeezing the futon into the guest room). I am at home for the weekend so Chester will have other friends staying with him. There most likely will not be another posting until Tuesday. But know that Chester is well-held, doing well and moving forward. From all of my research into Glioblastoma Multiformae, six months with only a half centimeter of new tumor growth is a HUGE victory, and hopefully means that Chester will be a longer-term survivor of this aggressive cancer. I am so in awe of his daily work at living, and know that the love and support from all of you out there is a major enabler for his daily survival. Thank you, and may we all savor each day of our lives, basking in the beauty of being alive together.

No News Just Yet

Hey All,

Chester had his six month MRI on Monday, and we were supposed to meet with Dr. Tang today to have a general check in and for him to read the MRI films. But he got called into an emergency surgery so Chester's appointment was postponed. We will be meeting with both of his oncologists on Friday and should get the full report then. Just wanted to let everyone know that we haven't received any new information just yet.

We just finished a lovely sushi feast with Jane and Dylan, both members of the team at The New School of Erotic Touch (Joseph Kramer's school). After once again testing the question of "is there such a thing as too much sushi?", we sat and talked for awhile and then Jane began looking through a couple of Chester's many big boxes of beautiful fabrics. She is the official Healthy Chester seamstress- creator of the monkey pants seen on this blog and some of Chester's favorite pillowcases. She took home a big bag of fabric and I'll be bringing more to the office tomorrow.

So begins the long process of gifting away some of Chester's belongings. As Jaime prepares the house for sale, we will be spending a lot of time up at Forest Lane this month packing up Chester's apartment and the studio. We'll together sort through his belongings, figuring out what to keep, what to gift away, and what to donate to thrift stores. A long and emotional process to be sure, but I'm glad Chester can actively participate in it and see that his belongings will find good new homes.

Off to bed soon. Another good day, complete with a beautiful therapy session with June and a great trip to Berkeley Bowl where we stocked up on fresh veggies and other nourishments. Chester's current favorite is a chopped salad made of baby bok choy and fresh anise root, dressed with buttermilk, mayo and mustard. We've made three batches this week and another will be prepared soon. I encourage him to follow his cravings, a good guide to what his body is needing for all the incredible work it is doing. And as we head into another round of chemotherapy, starting Monday, I am glad he is fueling up on sushi, greens, calamansi juice and chocolate covered cherries. All power foods in my book.