Put a wig on it.

Part Two of my longer blog continues. There is a new age fallacy that is not supported by any traditional or ancient wisdom that somehow we can create all disease through our “bad thinking”. I just watched Kris Carr’s excellent Crazy Sexy Cancer and she talks a lot about this. Trying to go back through every possible bad “juju” you may have committed is literally crazy making. And standing beside you are all the people who done worse who are perfectly healthy. I have a disease more commonly seen in kids. Did the 2,4,6-year old attract their leukemia? Do people attract Alzheimer’s or Huntington’s Disease? No. The truth is that sickness is part of life. Some you attract, for sure, with bad habits: too much terrible food, too much drink, not enough exercise, stress and guilt can cause illness. But I think there is an injury to life-giving quality of compassion for yourself and others that comes from too much of this judgment and self analysis of all the mis-steps you might have taken. Some things just happen. Injury—and sickness—can come out of the blue. And despite how much Americans, especially, would love to outrun the possibility of sickness or injury or death, it still happens.

I am not going to go over my life to see how I created leukemia (which has no known medical causes other than intense radiation). My life is a song of gratitude. I have grieved for the world deeply and I will not turn away from that. But I have also received so many innumerable blessings and been bathed in so much beauty and grace that this has healed every wound.

When I walk the hospital halls, I see so much activity supporting some very sick people. And the more I can see it, really see it, the less lonely I feel in my own journey. I am part of existence there, the part we don’t see very often, the nitty gritty reality, strength, pain and beauty of people who fight for life. I am using the meditations and dharma talks of Tara Brach to help me stay mindful and in my heart. One of the things she reminds us is that fear shrinks our world. Wrapped in panic, you end up walking through the world as a small tight self, sure that your own little drama is separate from everyone else’s. You can’t order the terror to go away. But you can enlarge your sense of self and connection. And so, using her meditations, I breathe into the fear and the unknown, recognizing it, accepting it. Then I breathe out into the Ocean of Presence, into the spacious heart of the Creator and the mystery and miracle of Love.

In closing, I found this piece of writing in a little booklet called Voices of Hope and Healing: essays written by transplant survivors. This piece of writing spoke to me so I am just going to quote it. I think she fearlessly says what this time of life really feels like beyond all the drugs and hospital and doctor visits.

Elena and Justine Pope. Elena said I looked like Fivel from American Tail.

“I clung to life and became friends with death as I reframed my life as to be fully prepared to live and fully prepared to die.” This woman loved sewing; it was her lifelong passion. During the long waits of her treatment, she made a series of narrative quilts. Again, to quote her: “In my own hand I had stitched the story of how life changes in an instant, that this is a journey with a perfect ending whichever it goes, and that in the end ‘all will be well’ . . . I think that when faced with the real possibility of death and fighting fiercely for life, everything came into sharp focus and took me to places I wouldn’t have gone otherwise . . . Now, eight years post- transplant, I have the luxury of survivo rship and value time, telling myself, “Look! Listen! Pay attention! There is beauty all around, and you may never pass this way again.”

If I have a story to tell in eight years, I would like it to be like hers. I pray for a good donor, my brother to match, or an unrelated stranger or a cord blood from a newborn baby. Some of you have been wiling to donate stem cells right away, and I cannot thank you enough. We have to find out if this is something that can even work in the complicated world of blood typing and genetics. More on this week.

My gorgeous quilt from the San Juan Quilters.

Your poems, wisdom, notes, love and support are carried deep in my heart. I read them everyday, and they sustain me deeply. Even when I don’t answer—I am sorry to be so slow. Just that busy cancer life . . . chemo brain and overwhelm. But right now, I am saying thank you to each and every one of you who have touched my world.

I have started this blog entry three times, wondering what to say. Ended up with so much to say that I will be merciful to you and break it into two parts. There is not much to say about the last stay in the hospital. It had all the same qualities as the last time. Hard it is, there is no getting around it. I owe my life right now to the medical staff at UW Medicine, and the Seattle Cancer Care Alliance. To the nurses, especially, I bow with respect and deep gratitude for all that they do and endure. No matter what I say about the rigors and sometimes, the horrors, of being under the chemo “therapy” regime, I cannot deny that without it, I would not have lived to see this budding spring.

Somehow we thought that chemo was the main event of this disease. But it’s not. It is the stem cell transplant (which I believe has largely replaced the bone marrow transplant) that is the ticket to future health. Chemo is the hammer that takes the disease down. Transplant ensures the success of the endeavor by giving your body a new immune system.

Stem Cells, the givers of life

We had no idea when we checked into the hospital in late February of the startling and complicated world of stem cell transplants. That seemed far away and all of our energies were concentrated on getting through chemo, not to mention setting up a whole new world in Seattle. When the process of trying to find a stem donor began, it came with a bang, with a rush of new information and not a whole lot of help from any quarter in actually sitting down and explaining the total intricate procedure.  If I were German, my chances of finding a match would be great, as so many of them sign up. But this is where the complex dance of my globe trotting ancestors steps in. Turns out being partially Latino or Hispanic—a population that doesn’t have very many donors—mixed with Scottish/Irish/English—the very genetic pieces that make me “me” lead to a very small pool of potentially qualified unrelated “Full match” donors, on the scale of 10/10. Then they have “mis-matched” donors, meaning that they match on everything except one allele, put that puts your match to 6 to 9/10.

At the same time, breakthroughs in using cord (umbilical) blood from delivered babies is making news—miracles, really. At no cost to the family, and no obstacles other than donating the umbilical cord which is normally discarded, people of all ages who had no donor matches—and therefore no chance to live—are getting successful transplants. So, when the time comes, I could be given life from a baby. This thought makes me smile, though it is not the stem cell team’s first choice. It truly is a remarkable time for a disease which children and adults share. When my droll Swiss  Doctor called me sturdy, in terms of taking the chemo with no game changing drastic effects, and my daily walking, it also made me smile–though all that can change in an instant. I hope for a new sturdy immune system, like my old one, as they will kill mine off and replace it it with a new one.

So, I think—this is what they don’t want to even get into in those first desperate days to kill the leukemia with the chemo arsenal. You couldn’t take it in. And it all the uncertainty and possible impediments could make you lose the belief that all this ghastly stuff you are going through will lead to the place you want to go. Now they want it on a fast track but that still means 1-2 months before all is said and done. And that’s not counting the recovery, or the possible complications.  Now the one thing I know as the days roll by is that  . . . we just aren’t going to know until it’s happening.  One day at a time. When the world is fueled mostly by planning and calendars, living one day at a time has the effect of creating a time out of time. I walk slower, and observe more these days. Knowing how much injury and waste is aimed at this fair planet of ours, I also know for sure that the faster we go, and the more mindless we get, the worse it is for the planet. Thích Nhất Hạnh talks about touching the earth gently and mindfully with our feet. Not a power walk.

I keep coming to the same conclusion: This is not the worse thing that could happen to me. Quite simply, imagine being the parent of a twenty-something who has my condition. I’ve met two. And then go from there to all the other uneasy worse scenarios your vivid imagination could cook up. Anyone with knowledge of the world knows that there are far worse situations that could confront a person. And I am left with a single astonishing and obvious truth. Life isn’t safe, it doesn’t come with a guarantee or a warranty and all the seemingly healthy people walking around me are at risk, all of the time. Death awaits everyone. And we mostly act like this isn’t so.

Part Two to come tomorrow. It’s a lot to take in.

With Mara Lawrence on a walk in Arboretum just before entering hospital.

Just a few random thoughts that have been brewing these last couple of weeks:  #1. A number of people (men and women both) have asked me what the percentages are for Shann and which level of cancer she has  (stage 1 etc.).  Now, I can’t speak for anyone else (specifically Shann) that is in this or similar situations, but for me that question doesn’t settle real well.  I know as a betting man (I am pulling for Syracuse in the final four, despite their underdog status—-it’s where I went to law school) that knowing what the bookies say, makes some sense before I place my bet.  But with Shann’s illness, what’s the point for anyone to know what the percentages are? We’re ‘all in’, in poker lingo and we, or I should say I, am not very interested in discussing the percentages or the level of her cancer.  Suffice it to say– that it’s not a good ailment to have.

So, that was written a couple weeks back and ‘the smoke has just now settled’ for me, and I am thinking again of sharing some of Porten’s random thoughts to add to this blog.

Watching The West Wing in the Hospital bed. Steve is not really asleep, just looking down. And yes, we dress like that in the hospital because it is so cold.

Frustration and fear have been two of the hallmarks for me of this past few weeks—the reams of paper work for the insurance and social security sign ups for Shann.  Trying to come up to speed about this stem cell donor process—pushing and pleading to make sure that the t’s all get crossed and the i’s dotted—learning 10 days after the typing has been done on Shann, that something called a PLA test (needed before the nonrelated donor process can go forward) had not been ordered or run or delivered to the donor team….how is one to know?—or that some new processing was required  on the part of the insurance company, before the ‘team’ could dig deeper on the 7 potential donors that have been identified—-how was I to know?  Thus the frustration.

7 people in the world doesn’t seem like a lot of people to me—-thus the fear.   Are they even still available, and what will the expensive further testing  indicate?  Will there be any 10 out of 10 available donors? And the lesser candidates, those with fewer matching ‘thing-a-mahootchies’, if used, will mean that Shann’s body will be more likely to reject the implanted cells—all of which gets ‘dodgey’.  So, Shann is now out of the hospital after the beginning 5 days of cycle IIA, and in two or so weeks if all goes well, she will begin cycle IIB.  After that, somewhere in mid-June by my reckoning, and if there is a good and available donor, we will begin the stem cell process  which takes about 3 months to complete and to ‘get out of the woods’ with.  There it is, as far as I can tell.  This next few weeks will uncover more info on the candidates and the match potentials.

A little ‘shout out’ now for a whole slew of people: from the fine fine staff on the 8th floor of the UW Medical center Montlake tower, to the crew at SCCA (Seattle Cancer Care Alliance), to Shann’s walking group who have supplied us with homemade goodies, to the island friends that have taken care of our four legged, and those that have sent cards and emails of support, those that are organizing a fundraiser for us, and those that have offered up prayers and chants of good will and healing…..It’s all humbling and heartening and appreciated!  Thank you.

Many have stated “anything, any time any way”—well here’s some thoughts:  Shann has had several blood transfusions.  They come to her from blood donors—both she and I have been donors and now it’s our time to receive.  Thanks to all of you that are blood donors and to others, consider doing it—it takes an hour and it’s not that unpleasant.  It’s truly a gift of life!  Shann is (like most of us) of mixed blood.  There are not enough marrow/stem cell donors of mixed blood; specifically those of Mexican mixes.  If you are between 18 and 60ish years of age, you can, with little initial discomfort to yourselves, become part of a worldwide network of life givers.  In the first of several steps, you will give a swab from your cheek and your initial typing will be put into a pool of ‘potentials’.  Consider doing it by checking out www.marrrow.org—or looking up national marrow donor on the google ‘thingie’.

If you are pregnant, consider donating the umbilical cord, as it can also be used for patients needing stem cell implants that don’t have good matches otherwise. From the Fred Hutchinson Cancer Research Center: “Cord blood has other advantages as a stem cell source.  It is readily available, fewer viral infections are transmitted and extremely close HLA tissue type DNA matching is less important than it is for bone marrow transplants.   This makes it especially promising for the 16,000 leukemia patients diagnosed each year who can’t find a matching bone marrow donor—-many of whom are of mixed ethnic or racial ancestry”

Lastly be a volunteer—helping kids, the elders, the infirm, those in hospitals and (my favorite but not directly connected to Shann’s medical situation) the wild places and the wild critters.

Outside now—(all of you, and me.  That’s an order!)—and smell the spring fragrances!—-salud and cheers,    Porten Sr.

Mariya has been here for the past few days. For a person who loves family time, I am doing pretty damn well. Nothing like looking across the table at our two beautiful grown daughters to make the air feel like dancing. Together, Mariya and Elena have cleaned and organized our overwhelmed life, cooked and nursed and chauffeured and generally been super stars. This also allowed Steve to get up to the island for a couple of days—something he sorely needed, just to get away from cancer and do something different.

We spend many hours at the Seattle Cancer Care Alliance, getting chemo, blood, platelets, spinal taps. But we have time left over to discover magnificent old trees in the Maple Leaf neighborhood and to take pleasure in the rocketing beauty of the Northwest spring. These days are quiet. The patina of chemo covers everything I eat, so I have learned to eat despite my inclination to not bother. But there are also so many good moments here.

I played an old Kate Wolf song the other day. It seemed to sum up what I am feeling. “We’ve only got these times we’re living in.” No one can make their life go exactly according to plan, but we can consciously inhabit our given time. Out the front window, the magnolia tree across the street is bursting with blooms. We had one of these “tulip” trees in my magical backyard when I grew up. This intimate space felt miraculous because it was so alive, pregnant with fruit trees and soaked with birdsong. I want this memory, and feel much gratitude toward this tree for reminding me that much of what was special during that time of my life was my attention to the “poetry of reality” (Richard Dawkins invented the term). It is something I had naturally as a kid, but everything in my adult life is slanted toward a more virtual reality. In a very real way, having leukemia gives me the opportunity to have time enough to be utterly enchanted by flickers and chickadees in the city, and to feel the preciousness of their existence.

Beside SCCA/hospital routine, life continues, even blooms. There are long conversations about all manner of topics with my family members that more often than not, merge tears with laughter. Steve’s stoic efforts to cater to a suddenly picky palate  sometimes hits us hard and sometimes cracks us up. Amazing supportive and loving cards and gifts and notes from friends and community keep finding their way to me, everyday. Each family member has had to learn to give me a nightly shot until finally, inspired by their grit, I had the gumption to do it myself. I greeted my bald reflection in the mirror and impulsively said “hi Dad”. Coming back to meditation, I am reminded every day about what really matters.

Doctor says I am doing “good”. This means hospital, for second round of chemo-Group A. Friday or Saturday–April 12,13. What I experience now will sustain me then.