Well, after 8 days in the hospital I was released. Not much to report me there. A fever landed me in and then I had to essentially pass a bunch of tests before I could leave. Though I wanted to get out, it wasn’t bad except for the lack of sleep. Despite that I had appetite, and energy and did not react badly to the last of chemos. The presence of Steve, Mariya and Elena brightened my days. My cautious doc knew I wanted out and we had an ongoing mild argument about when that was safe. The old protocol was to stay until you engrafted (around 3 weeks) and I knew that that would be murderous on me and the family. So I had my arguments  lined up-arguing the healing power of sleep and nature and exercise against constant vigilance. In the end, he gave graciously gave in to my persistent and surprising wellness, and called in the PA by saying “don’t you think she looks like a rose?” Shortly after, he signed the release papers for Day 8. Walking out into the rainy afternoon with Elena was like the first day on Earth.  And here I am, back at the cottage. Today, I took 3 naps. I will now that things are truly healing when I begin to have dreams again.

To refrain, that was the LAST of the chemos. My hair and eyebrows are growing in, though I am told I will lose the hair again, but I have evidence now that it will grow back (nope, not a blond). But just to be able to say that was the LAST is amazing. I have been getting chemo since the first of March.

Now, we wait. Daily blood draws will tell us about fluctuating electrolytes and blood counts. Right now, my white cells are zero. So, I am all about trying to keep infection away. Mariya’s cells are growing n my bone marrow. When my counts come back, that tells us the graft worked. They will take a bone marrow biopsy on Day 28. What we want to see if that my marrow is all or mostly Mariya’s.

Then we wait to see to see how graft versus host disease goes. But for now, I am in good shape, and absolutely sure that prayers and love carried me here, along with UW Medicine.

Created and sent to me by my friend of 55 years.

Woke up this morning with the desire to express deep gratitude to all those who have prayed for us, or sent positive and healing energy our way. Thank you. So many people have written that I have fallen way way behind in my personal correspondence. But never think for a moment that I didn’t read it and appreciate it. You have held me up and given so generously of your time to write a heartfelt note, send a gift, Facebook encouragement, expressing your good energy for me and our family. This is a generosity that heals the world and draws us closer as community, just as I am sure it is at work now for the recent tragedies on the island.  You have inspired me and uplifted me, and you do the same for others who need it.

So far, on Day 3, though I am in the hospital, not much happening. Still have appetite and energy. I know I have some big obstacles yet to overcome, specifically, accepting the graft, escaping infection, and dealing with graft vs. host disease. I am more aware than ever of how fragile and unlikely our very existence is. It  is a road with pitfalls (and joys) that you can’t foresee. We just go on about our business as if life is predictable. But it never has been.

Tomorrow, I will be hit with the last of the chemos. For two days, I will receive a high dose of cytoxan to tone down Mariya’s cells as they re-locate to my bone marrow and, as I imagine it, they react in a startled manner. In the most positive of words, the cytoxan acts to mellow them out a bit. I just hope I escape without too many side effects.

So I have met myself in so many ways on this journey. I’ve had the time that most people never get, and without the energy that usually has us up and doing things. I have seen myself as a varied landscape, with deep canyons of grief, caves of dread, and exhilarating trails through spiritual dimensions. I have enjoyed the pastoral countryside of family in a way I thought lost forever, though I believe it’s been hard on the girls, we know each other better, and we have learned a lot about ourselves at the same time. I have wandered into the deserts of anguish but I have also felt such peace and gratitude in our borrowed abode, and relished its quiet, right in the middle of the city. Being forced to drop out of social engagement for a spell has been healing to my ever busy soul. Still, I have startled myself by how pettiness can creep along, like a shadow, right behind you. I have unmindful, wanting hours of entertainment rather than anything more worthwhile, tough and whiny all at once.

Crazy experience, to be a human. We have all of these dimensions but we rarely acknowledge them all. I would say, from this journey–it’s worth it to take the time, as you can, to touch the fullness of it. As you can’t see around the corner, more reason to try to keep waking up. I don’t think it’s a steady climb–but maybe more like bursts of awareness, then back to “normal” life. But if you catch yourself noticing these flashes, then you can start to bring more of that consciousness into your life. That’s my hope, anyway. That’s my goal for my second life.

Well, I felt fine all during the uneventful stem cell transfusion. The family was there. They and the nurse sang happy birthday to me. We left and I felt fine all the way home. Took a nap and woke up with a fever. Since I am neutropenic, we had to take it seriously and guess where I ended up. Yep. The hospital. The good news is the fever is trending down and I still feel fine. I feel completely surrendered to the process and calm. Not all births are easy. A peaceful energy is deep within.

I came out to our parked vehicle in the basement of SCCA to drop off some unwanted Shann baggage and found on the windshield two red berries still attached to the stems.  It somehow seemed significant to me, as upstairs on the first floor radiology for Shann, and the 5th floor infusions for Mariya, two of my red and rare and beautiful berries were doing their respective work to join forces on yet another new trail—–stem cell transplant.

Mariya has been going through daily neupogen shots to ‘goose’ her body into overproduction of new blood cells—-so much so, that her large bones are actually aching as they ooze out the cells through the porous bone as she is now quadrupled her output in 6 days.  Meanwhile back at the ranch, Shann has  submitted her precious and fragile body to 5 days worth of chemo infusions and just now TBI (total body irradiation), as her old cells are killed off and her body prepared as best they know how, to receive Mariya’s stem cells tomorrow (August 21) which will henceforth be referred to as day 0.
On day + 3 and 4 (or more, depending on how Shann does) we will be up at U.W. Medical Center on the 7th floor as she will be given heavy doses of chemo to still Mariya’s cells, so that they aren’t being too aggressive in their battle with Shann’s cells.  And so will begin the watch for a grafting of the two bodies cells, and a hoped for minimum of harm, due to the dreaded GVHD (graft vs. host disease).  We have a drug regime in place,  that in some cases brings us out to day +180.  But for now its this next couple of weeks that we will be focused on, and will from time to time report out to you about.  Shann’s system will be significantly compromised and exposure to germs/fungus/virus’s —everything the world at large has to offer, will need be kept at ‘arms length’ .  Visits will most likely not be allowed for awhile.  As Shann feels fit, she will be reading notes of encouragement and humor and responding with her wonderful prose—mostly on  this blog site.

If you have business or general queries feel free to contact me.   Good cheer et al, use this blog or our joint email.

Onward and Upward!    Steve

Ps  For what its worth Shann tells me the sun is in Leo and the moon  is in Acquarius and there is a full moon tonight.

Time has a way of moving ahead even when you could swear it was standing still. We are at Day minus 6. Five days of chemo, one of Total Body Irradiation (40 minutes worth) and then I receive the stem cells that have been harvested from Mariya. That is called Day Zero. My second birthday.

So today we meet the chemos with the oxymoronic term “conditioning”. I have always thought of conditioning as a positive thing: you condition your hair (if you have any), or your body. Conditioning in this world start with two consecutive days of 12 hour chemo drip and hydration at the SCCA. Cytoxan and fludarabine. We came in chipper and feisty but after about 4 hours, I could feel the nausea right through the anti-nausea meds. It will be my companion for many a day, so I can only hope to develop a regimen that will keep it tolerable. After that the chemo days will be shorter. Guess that peach fuzz starting to grow back on my head will go away again.

If you pray or mediate or send thoughts/energy out to me, please focus them on the next 6 days: that the conditioning and radiation are tolerable and don’t knock me for a loop, so I come in strong for transplant. I appreciate it so much and experience great gratitude for thinking of me.

The transplant, in and of itself, will be like any blood transfusion, and it will be anti-climatic. It’s what my body, mixed with Mariya’s immune system, does next that could be dicey. So I am praying for her cells to recognize me as part of her and to be nice to my system. This, I figure should be easy for Mariya, though our immune systems have their own minds.

I would like to dedicate to the UW Medical Center, the SCCA, the Fred Hutch center and all the donors, my companions in cancer here, Mariya my donor and bright spirit, Elena my energetic mover and shaker, and their friends, especially Will, who help them cope—Steve who makes me laugh and stay feisty, my funny dog, my devoted women’s circle, the whole wonderful and caring cast of friends and family near and far who send me so much, I can’t count the ways. Thank you.

So, we crammed in as much as we could cram over the last two weeks of freedom. Now it’s time to switch gears to a quieter and more careful time and really put the entire focus on a successful transplant with no complications.

Depending on how I am doing, this may be the last blog entry from me, personally, for awhile. Or not. However, Steve, Mariya and Elena are all eager and ready to write, so that should a treat.

They say a picture is worth a thousand words and I will close with photos of our trip to the Olympics. The whole family had to work together with our tight timing to make it happen but for all of us, it was something we really needed for the tough times ahead.  We went to Hurricane Ridge, Rialto Beach, the Hoh River Rain Forest and Sol Duc Hot Springs. I’ll let these photos tell the rest of the story.

 Hurricane Ridge

Rialto Beach

Hoh River Rain Forest

Sol Duc Hot Springs (taken through the screen window)

My 14 vials of blood history.

The countdown to the transplant has begun. We said goodbye to my oncologist—until the transplant team releases me, in about 4 months. On Tuesday, the 30^th of July, Mariya and I went into the SCCA together and began the process with a blood draw—12 vials for Mariya, 14 for me. Blood holds the key to so much on our lives, and each vial will tell a story of past or current infections, whether or not we have enough potassium or vitamin D, the current status of our red and white blood cells, and more. We each have our own team, from doctor to nurse, focused on us and our well-being separately from the other, as it should be.

We have left behind the smorgasbord of every cancer imaginable to a single-minded focus just for people with blood cancers who are getting transplants. “Transplant” is its own world and held well away from the rest of the hubbub of the SCCA, mostly to keep our fragile and weakened immune systems safe.

In this past week, I met with a bewildering array number of specialists—from oral medicine to pulmonary function. I got another bone marrow biopsy and spinal tap to be sure I am still in remission. I got another unit of blood while the nurse and PA came in to tell me what new drugs I would be taking. (The one I find most interesting: synthetic bear bile). Each night, I have come home, my head spinning, my heart wanting to hide in a Netflix fantasy, and my body feeling like a horse at auction that has been thoroughly probed and examined.

Sorting through the reams of paperwork.

Steve and I had a hair raising meeting with the attending doctor who warned us about all the side effects and possible things that could go wrong in the transplant. After that meeting, I seriously wondered if having a transplant was the wrong direction. Especially when she said the medicine had focused on quantity of life but they were just now really looking at quality of life after transplant. But it is no use asking questions, for the answer is always the same: “everyone is different”. So they don’t know. I don’t know. No one but God knows.

Don’t ask me what I feel, I don’t know that either. I feel the innocence of my body. It feels happy now that it is not assaulted with chemo and I don’t want to whisper out loud what I know is coming. The nausea and fatigue and big risk of infection that will follow the so-called conditioning chemo, radiation and the transplant itself.  People tell me not to focus on that—to be hopeful. And I am, but also as Maya Angelou says: “Hoping for the best, prepared for the worst, and unsurprised by anything in between.”

I have lived my life by meeting it with energy, even if I had to hide out for hours or days afterwards to repair myself. That is how I know I am more an introvert than people know and why I fool them and often myself in the process. I could do that now—by telling you that all will be well. Instead, I will confess the things I fear before I tell you what lifts me up again. During the dark moments, I come to a place where there is no fooling to be done. I feel like a soldier who has been through several hard battles. Now on leave, knowing I must return to the battlefield, I struggle to stay in this moment—this goodness; where vigor belongs to me once again and appetite feels like the kiss of life itself. A cold shudder runs through me as I consider meeting once again with exhaustion so deep I feel more zombie than human. Nausea will wrap its cold arms around the center of my being. I will feel like a burden to my family. I become an existentialist who has painted herself into a philosophical corner.

Painting on the Transplant Floor.

 And then, I do that crazy imaginative thing. I paint a window and I climb out of it. From this place, I witness myself holding all that dread. And I know fear of the unknown future is quite literally insane. I take a deep breath and I let go. When the Future is Now, I will know it, moment by moment. Until then, it is just thought. With my Beginner’s Mind learning as it goes, this happens several times a day—the apprehension, the epiphany and the rescue. A bright light shines on my family and friends, the life I have been lucky enough to lead, and the beauty I have beheld. My spiritual practice is to participate in life, just as my church is Nature. I wouldn’t want it any other way. I welcome this education. I never imagined that Cancer would be the teacher that it is.

17 days to transplant.

“By not knowing, not hoping to know, and not acting like we know what’s happening, we begin the access our inner strength.” Pema Chodrin