Memory from this summer.

12/23/13  A little touch in from the ‘peanut gallery’ ala howdie doodie

In a hand made bag delivered to Shann’ss hospital room the other day is a collection of a dozen small hand made gifts offered out by the PNNAG—a local needle arts guild—with a lovely letter, a portion of which follows:

“The gifts in this bag are for you to give away or keep…..The giving of gifts is an important part of winter holidays in most cultures.  Making and shopping for gifts are two of the pleasures of the season.  Many years ago, one of our members was a nurse at the bone marrow transplant unit—-she noticed that patients and families experienced isolation from the gifting activities of the holiday season.  Patients’  energy was put into regaining health and family energy was directed toward support of their loved ones.  The impulse to give was there, but there was no time or energy to spare in crafting or shopping for tokens of esteem and affection.  Higher priority must be given to the task of healing.—-there is a saying that a gift blesses the giver as well as the recipient.  May the blessings of the season be with all of us”

I can only say that the gift bag and the letter have touched me deeply.  Unknown to me, unnamed ‘elves’ have been working away selflessly through the year to bring a cancer patient and her husband a touch of joy.  It has worked!  I would like to challenge myself along with any readers, to take this example out into our world and do selfless acts of kindness  on a daily basis: hold the door for someone; let a car merge in from a side street; smile at the world; put a buck in the struggling persons mitt;  mentor a kid or hang out with an elder; do some good work for our over worked and under appreciated natural environment—-the list goes on

My birthday treat. Chocolate cake, strawberries, whipped cream.

AS for Shann;  she is making positive progress.  Her O2 levels are climbing back up into the mid 90’s with less and less assistance from artificial sources.  Her RSV is at the very least  been slowed, and has not gone deeper into her lungs.  We are awaiting the most recent echo grams, which will tell us how the fluid around her heart is faring.  The thrice daily regime with the Ribovirum continues.  She is still in isolation and not seeing anyone but her ‘hubby’ and the network of medical care providers.  Not sure when she will be ready to make the move out of the hospital and back to the island—we’ll keep you posted.

Cheers!    Sgp

P.S. From Shann—I have been told I am optimistic. And so I believe we will be home on or before Christmas. Or thereabouts. We are in The Pause now, when Solstice time slows down on either side—darkness fades slowly and light returns also slowly. A good time to an optimist.

Sending Mariya back to Tahoe after Thanksgiving.

December 20, 1950—a most auspicious birthing day–! Shann Cathro Weston arrived into this good world in Mexico City, where Bruce met Maria, and became the newest member of the Weston and Camerana Tribe.

And here we are 63 years later, celebrating from U.W. Medical Center—our old haunts from various points during this journey with Acute lymphoblastic leukemia (ALL).  Shann was medivaced from our island home on Tuesday eve—on a pretty full moon and starry night for a helicopter ride across our Salish Sea,— down to the UW stadium where her chariot (ambulance) awaited her.  A seamless transition from our 4 bed and spanking new island hospital, down to the multi storied complex at UW.  Shann is resting and doing well at this  point.  Two issues:  fluid around her heart, which may have been the cause for her rapid heart rate (pressure not allowing her heart to get a full volume of blood to flow and thus working over time to keep her 02 levels up) and two–something called Respiratory syncytial virus (RSV) which is threatening her lungs with pneumonia. Most us would call this “the winter grunge” and work through it in 5-10 days—but people with compromised immune systems are much more at risk. Presently she is going through a therapy involving the drug Ribarivin, which is administered in a mist into a ‘tent’ 3 times a day for two hours each.  Both situations are serious and will be monitored closely.  I expect that we will be here for some, many days.  More on her health situation as it develops.  For friends; please call my number if there is an issue, and as she gets healthy she will be back on board with hearing directly from you.

I haven’t written anything in quite some time.  I have started and stopped a dozen times; sometimes it was because I was frustrated and fatigued with this all and wanted to ‘belly ache’ about something or other, sometimes because there were/are so many people and situations to give thanks for and celebrate: vis-a-vis Shann started driving again a couple weeks back and regained that level of independence!  Neighbors/friends stoked the fire and warmed our house in advance of our coming back, and supplied us with some dandy hot dishes.  We got to walk on home turf with Jack, and Shann got to be with her ‘girlfriends’ and I with my ‘boyfriends’ for that week after we were ‘released’ by our transplant team.

We are optimistic and our spirits are good—We are appreciative for all the care and loving that has come our way—Our wish to you all, would be that you remember how tenuous and rich our existence and environment are.  Celebrate with gusto and full-throated gratitude, as you move through this Solstice and Christmas Yule Time. Doing that will honor us deeply.   Be of good cheer!   Steve

This was written a quite awhile ago when arrived on island non the late night ferry, Friday December 6. Moving out of the cottage and in to our home proved to be rather tumultuous and a cold with a nasty cough took me down first, then Steve, then both us and back to me.

But here my first impression: We are home. The dark firs rise into the cold gray sky, a soft pink rims the edges of the horizon. Last night, the moon was so close I felt I could nearly touch it as we swung out and on the Salish Sea, shadowy islands slipping by. I slept for most of it, that deep ferry slumber like a baby being rocked. And when we go to the house, the sky spread out overhead, oh my god— the sky, so full of stars that I have missed.

People have asked me what we will do when we get back. Well, dear reader, there will be a lot of trying to sort out 2013 and accepting what 2014 brings to us. The triumphant story is that I survived a deadly disease. For now, I am cancer free. I am grateful. And we can leave it at that.

I never imagined how many other stories would be in the mix. While reluctant to put my experience on a par with a survivor of war, I recognize more than ever how much is left unsaid in the rush to proclaim the good news. I am glad to be back at the deepest level because I know what the alternative is. I am changed in ways I can hardly articulate.

Some things are worth noting. I now have the relief of being off prednisone. With it, the steroid induced diabetes also disappeared. I also have a body greatly weakened by what one of the nurses called the “devil drug”.

My dad always answered he was “peachy keen” when you asked him how he was. Even if it was obvious nothing could be further from the truth, that was all you could get out of him. But now, I think, it is time to adopt his saying, for rest of this saga.

As for the transition from Seattle and the SCCA . . . I will miss many things about Seattle. I cannot say the same about the SCCA. A short example to explain why. Just before we leave, we get a call from one of the Maravir (clinical trial drug to control CMV) study coordinators.

“So, looks like the Maravir isn’t working anymore for keeping your CMV numbers low. So we need to get your left-over drugs and an EKG and your logs.”

“Okay. Um, so what are you saying?”

“We just need to get these materials, so we can stop the study.”

“I understand. But what are you saying about the CMV for my body?”

“Oh, well, you went from 31 to 200 to 20000 in a few days.”

It now occurs to me that no one has ever really explained what these numbers mean, or what CMV could do. It also occurs to me (and not for the first time) that the study is more important than me.

On the day 106, six days past the normal Day 100 discharge date, “the doctors” come to me (another group of “I-have-seen-you-one-or-two times doctors”). They ask me to stay another week or two for monitoring. I don’t know how they expected me to react, but you do, right?

“Why?” I ask.

I am thinking they are putting me on back on Gancyclovir. It is my only option.

“We want you stay here so we can monitor if the numbers goes up.”

I ask, “But if the CMV numbers goes up what can you do?”

“Your little “Podunk” (they don’t exactly SAY this—it is implied) operation in the San Juan islands can’t monitor you over the weekend.”

“But if the numbers go up what can you do?”

“Put you on Gancyclovir.”

“We have that all set up—to get the Gancyclovir in Friday Harbor.”

“We want to be able to monitor you.”

“We can do that from Friday Harbor.”

This boring conversation goes on for quite awhile. Meanwhile I wonder who I am exactly talking to, as the Post Transplant people have signed off the discharge and the Long Term follow-up crew has had only one Wizard of Oz meeting with us—with two doctors that told us they would be the ones following my case from now on. We really liked them. We never saw or heard about them again.

Suddenly, and with urgency, I know I just need to talk to a doctor who will be there again to talk to next week and next month. I can’t deal with the Ant Colony anymore.

And so, we wrest ourselves away from them and depart with no words of encouragement of or acknowledgment that we had spent months working together (in theory). The best we get is a brief “good luck.”

For 99% of the time (okay, 95 %), I have been a good soldier, and taken what they gave me. But I had quite enough of all this. And no one ever told me the inclusionary information of the numbers and what they mean. Luckily Dr. Google spelled it out for me. They were worried that if the numbers went too high, it could—well, kill me. But this seemingly irrelevant information was never explained to me. And if the numbers were 20,000, what is that out of? It sounds alarming but is that out of 21,000 or 60,000? Is the patient deemed too dumb to handle this kind of information? I understand is a teaching institution. Research keeps the doctors fresh. Not arguing with that, But really the SCCA always comes first. And finally after many months, I had to say, no—this time I come first. I am not a chart. I need good care but I also need a human face that recognizes me.

The really wonderful news, is that the Cancer Center at the new hospital has been great. A spa-like experience compared to the SCCA. Competent and attentive nurses, a good oncologist from Bellingham who comes once a week, blood draws, infusions and delivery of medical materials, no problem. Also we have robust options if I needed to be flown off. I am very pleased with their care.

So, how does it feel to be home? Great. Overwhelming at times. But also peaceful and right. So many potentially threatening possibilities that I lose track. The effects of the Transplant are front and center of very day. But the birds at the feeder, the walk to the beach that intersects with a super pod of orcas, a friend coming by with goodies and just being here make the details tolerable.

The first place I always start to get grounded is with the season. Solstice is a celebration of the dark sacred night, even though it comes round at an astonishingly early hour.  The Winter Solstice asks us to Pause in our lives, to rest, to breathe and reflect. And to gather with friends and family, but not in a frenetic way. I am a Winter Solstice baby, so it has special significance for me.

The blog will continue, as it did before leukemia. Unless there is a significant event, I will report my health as peachy keen. I will explore my island, share the ways to do tangible activism and most of all, I will participate in the beauty, appreciation and gratitude that make life worth living.

Just the morning drugs and blood sugar log.

My title comes from my experience with the host of drugs that are my daily companions. One of them, Tacrolimus, makes my hands and sometimes my body shaky. At the same time, I have to give myself finger pokes and insulin shots in the stomach 3-4 times a day to combat the prednisone-induced diabetes I now have. With my hands shaking, I have nevertheless learned how to do this quickly in a restaurant bathroom, in the car, at the SCCA, etc. Every time I do it, I think about all the ways we do things though our hands shake, as we navigate Life—facing illness, the scary things we reveal or confess to, deciding to commit, deciding to leave, deciding to stay . . .  bringing new life into the world, caring for our parents, starting a business, starting a trip, going on after someone dies or leaves. All of it. Hopefully I will be over this type of diabetes as I ease off the prednisone (Dec. 4) but it has taught me a lot. I have not learned simply about blood sugar and the work of the pancreas and adrenals and but also gained a new respect for what millions of diabetics deal with every day.

Blood draw. Not a simple procedure.

I had my last bone marrow biopsy last week. The news is all good, the procedure was the most painful I gave yet experienced. Pretty sure it was the technician’s fault it hurt so much but the bottom-line is that I cried out loud and continued on for several minutes after the corkscrew needle was taken out.  I don’t easily cry and it surprised me. The pain that was just inside, beyond the needle, was not just for my own body and soul, it was also the Filipino woman searching for her children, for the death of my dear friend Marta, the African elephant slaughter, the vanishing orcas and salmon of the Salish Sea and all the pain and suffering of the earth. Steve was present, and I was infinitely grateful for his tender touch while the two technicians waited for me to get it together and the next doctor entered to give me a spinal tap (which went easily). That pain and that needle gave me permission to cry and I probably need a lot more of it.

Often when I say such things out loud, people get worried that I am depressed or holding onto pain that makes me sick. Since I have a dogged need to remain a witness and not turn away or numb myself out, I have developed own ways of dealing with it and one is to let the pain go through me and not hold onto it. Because THAT is what makes sickness. I witness and I do get sad. But then I let it go because this is how the world has always been, full of pain but also full of grace and beauty. And I want to see both—because somehow they are connected.

I just love the creativity of this neighborhood.

Prednisone gave me back appetite and filled me with manic energy that kept me from sleeping. So while my husband and then my care-giving friends slept peacefully in the past few weeks, I was awake for hours, mostly watching Netflix, in my current theme, Science Fiction. Time warps, anomalies, dinosaurs, a warehouse full of magical items, a band of survivors left over from a world wide plague, that all just makes sense at 2 AM. I ate too, late night munchies of all kinds while I watched these crazy shows until I got too exhausted to keep it up. Meanwhile the muscle wasting is too real and more scary than anything I was watching. This might explain the crazy desire to escape. Though I have walked everyday and can circumnavigate Green Lake (three miles) quite easily, the loss of muscle is evident and startling and intense. I have a long road ahead to bring it back. I am now being weaned off of prednisone, going from 100 mg of the stuff to now 15 mg. This is done slowly and we all hope that it does not inspire a flare of Graft vs. Host Disease (GVHD)— or they would probably want me to go back on the stuff.

If I wrote the chapters for a book called My Experience with Acute Lymphomic Leukemia, the shortest would be the Getting Sick chapter. The most dramatic would be the Chemo chapter. The most hopeful would be the Transplant Chapter. Little did I know that all of these would comprise half of the total book. The rest of the adventure would be known as Post Transplant. I have suddenly realized that I am in the middle, not the end of a marathon. I have a set of medications, restrictions, and possible conditions that my body could further endure from the consequences of a new immune system and the effects of chemo. It makes my eyes glaze over and my brain freeze. These are not things that anyone wants to hear about but they will be acutely a part of my life for another year to come. GVHD will be on the possible or real horizon for the foreseeable future. We will only know as I come off the immunosuppressant drugs how it is all working.

But here’s the good news (always barring complications).  We will come home for Thanksgiving with the doctor’s blessing on Day 99, then return to Seattle the following week for long term follow-up and final discharge. By the time I have taken my last prednisone, we will be home on island and then faced with the real questions of our lives. Life is uncertain. If we ever thought it wasn’t, we were kidding ourselves. So, given the stark awareness of that irrefutable fact, what do we do with ourselves? That question has been sitting there from the time I became an adult, to be answered daily.

My prednisone face and dear friend Lisa.

I have had such am amazing life. Now it is time to give back… slowly, keeping my health as a priority and only doing the things that bring joy and healing into the world. Now is the time to be amazed and transcended by the Hubble images and all the scientific news pouring out about the Universe, from quantum physics to the great elegance of the Cosmos. Now is the time to reflect on the face of God, Rumi style. Now is the time to listen closely to whales and elephants and bees and trees and turn what they are telling me into openhearted tangible steps to help. Now is the time to take a walk with friends and marvel at the beauty all around us, and make music and create things with our really cool hands and brains. And now is the time to give thanks, to give, to be with friends and family. I LOVE Thanksgiving. To eat! Yippee. Did you ever notice how good food is? What a gift! To eat! Yay! Life is full of miracles.

Wow. It’s November. I don’t know how that happened, that February turned into November but it is now Day 75 since my transplant. I can cautiously say I feel better. I AM better. I am starting to heal instead of cope.

The blood infection is gone, though I am still on antibiotics. The CMV numbers are way low (which is great news) and the graft vs. host disease seems to be settling down. I did have to go on prednisone,  which was awful but also good, as I have appetite and thirst again, and with that, something I had lost for a long time—energy to do things and exercise. I am still on prednisone and trying to get used to the rounded look of my face, but the dose is being tapered down and I will be free of it by Christmas…unless there are complications. “Complications” are the catch all term for all the things that can happen with a suppressed immune system, and there are quite a few. But we won’t go looking for them. Hopefully soon, I will no longer have steroid-induced diabetes. That has been quite the unwelcome learning curve! Soon, they should be able to let me off the immune suppressing drugs and let my body start functioning more naturally.

I had said that I was grateful to be cured by modern medicine but also shaken by the experience. And that I would sort out those feelings. Well, I have thought and thought about it. I know one thing for sure: I don’t know! The closest I can come to an accurate description of these past several months is that I was cured by a kind of super Ant Colony. I became my chart and the handling of that chart was well attended to, and signaled much of what came next. Doctors and Physician Assistants rotated in and out, nurses provided the only real human intermittent touch. Research was the ever present luminating force that provided solutions to very real urgent questions like when I had out of control CMV and the new clinical drug arrived to save my kidneys from the older medicine. Who can hate that? I am alive and cured because of this Ant Colony, industriously using all the tools at its disposal. Some of the means are outdated and we will look back at them as barbaric. But it was enough of the old and new, and as one of the first PA’s cheerfully said to me early on, this is a good time to have leukemia (and be able to survive).

Notice that I said cured, not healed. Healing is my job now. The soul splitting, body debilitating, shock of this experience will take awhile to restore to health.

Gratitude and appreciation continue to be my pillars of strength. I can’t do justice to what Steve has given me. He has been the constant steadying presence of my life here, and gave meaning to the word caregiver when I had nothing to give back at all. My women friends who gave him respite and me their love and support were critical to our ability to continue on. All of my tribe and friends and community have sent so much love and energy gave me the elements I needed to stay whole. The daughters are in contact nearly everyday and we have maintained an intimacy that we forged during this year together. Hey, I almost make having leukemia sound good!

Life is ever surprising, and I have surprised and astounded by the year of 2013 so far, in every way. Nothing I would have wished on myself, and I also know that my own little life is forever changed. I touched the cold hand of Cancer.  That imprint will stay always on my skin and in my body. Maybe that’s a good thing, I can’t decide—for though I would have liked to stay innocent to this, and age as the healthy person who was never sick a day in her life, I didn’t get to choose that.  What comes clean over and over is this: How we react to life’s circumstances is the real gold; everyone carries their own hard burdens and there is a lot of heart and courage and abundant Grace in the world. I will do my best to forget the worst of this sickness and its treatments and complications but those are keepers.

Still looking forward to being home by Thanksgiving. Barring complications.

I got the call at 5 a.m. Saturday morn that the lab at SCCA had grown bacteria in Shann’s blood, which had been drawn  the previous day.  It was kindly but firmly impressed upon me by the calling P.A., that this was not to be messed with and no “I couldn’t just let Shann sleep in for another couple hours—We needed to come in NOW”.  Well we are into day three at our old haunt on the 8th floor of the MontLake Tower at UWMC, and in some ways its comforting, as so many of the nurses et al are now friends from our  pre-transplant days here.  For me the care during our pre-transplant months stands out, head and shoulders above our transplant and post transplant care—More humane and lovingly attended to—perhaps it’s that these are professional ‘care givers’, and the transplant team is more often made up of researchers that cycle in as caregivers?

They are now working at the hospital lab growing out the bacteria to figure out with greater specificity just what she has, and until then she is on a powerful antibiotic drip called meripenem (sp?).  The heavy doses of steroids that she is on to deal with her GVHD, has caused her pancreas some issues with her sugar, so for awhile we are doing pre meal checks and depending on the numbers (if they are over 140) then units of insulin are injected into her belly.  We are told this should be reversible as soon as the need for the steroids drops off…..and they are hoping to slowly wean her of the prednisone, budesonide and beclomethasone over coming weeks.  For a guy who only knows about aspirin and aleve and then only on occasion, this regime of daily pill taking is befuddling.  Some with food, some on an empty stomach, some in the a.m.only,  some in the p.m. and some several times a day: dapsone (to prevent pneumonia); fluconazole and now voryiconozole (prevent fungal infections); maribavir (a clinical study drug to treat the CMV); tacrolimus for the GVHD; sprycel/dasatinib the chemo pills she will be on for 180 days, to keep the A.L.L from coming back; zoloft (for anxiety); synthetic bear bile called ursodiol to help the liver); norvasc (blood pressure from the tacrolimus); daily bags of hydration with ever changing amounts of needed elements—magnesium and potassium; which the heart uses to make the electrical ‘storm’ to make itself beat on without thought;  plus a dozen other ‘things’ that are required from time to time for a myriad of issues created by the drug regime and its associated cancer/chemo body pollution.
We are still hoping to get home for early December (with a special pass for Thanksgiving), but as was brought to the fore a few days back with the early morning call out, we cannot afford to be far from the working hands at the hospital’s cancer ward; not now and not yet!

Two weeks ago, Elena started the process of getting her teacher’s certification as a TEFL instructor, from a highly regarded, accredited program called Maximo Nivel in Cusco, Peru. This will allow her to teach English all over the world. She is sharing a room with 2 other gals, at a yoga retreat center close to the school, and seems to be acclimating pretty darned well;  What a courageous and soulful young woman!  Mariya is working two jobs and going to school back in the Tahoe basin—also a strong, intelligent and loving super star.   Shann and I are blessed so, by these two gals, and by bunches of good friends and family.  Jack the mutt with the floppy ears, is a great salve for us both.  And right this minute the sun is out and the color filled leaves are rustling, still attached to the neighborhood trees.

*****Postscript Oct.29–Shann here—Steve’s blog entry ended there so thought I would write a quick update. I hope to be Getting out of the hospital today. Over all, this was a pleasant stay and I feel better than when I came in. I am even eating again. They are starting the taper on the prednisone, and they have isolated the bug, which luckily was a sensitive and not a resistant. They got me off the really harsh kidney med (for the CMV) and resiliently my kidney function bounced back to normal. The Graft vs. Host disease, as long as it ca be controlled, shows that the graft is strong, alive and sturdy. Mariya’s cells are ready to work, as soon as they come off immunosuppression (the tachrolimus and the steroids).

It takes until 5:00 PM before the predicted “afternoon sun” finally emerges. To be frank, I had given up on it. Still, though it’s been a prolonged gray day, the weather forecasters were right. It is “afternoon sun”. I hope that “beating cancer” and what the doctors and survivors say, that the sunlight of health will show up is true, even if it’s a long time waiting for it.

All the cancer news is good. The last test we’d been waiting for came in saying just what we wanted it to say; that the Philadelphia Chromosome has been eliminated from my body. If you’ve forgotten, since it’s been a while since I wrote about it, this is the once deadly abnormality that causes the cancer cells to grow uncontrollably. So we have the final test back to show that the transplant was successful. But you don’t get very far in the happy dance before other dark forces make themselves known.

CMV (cytomegalovirus) keeps stalking me. The numbers got up into the “ohmygod” region, freaking the doctors out. Mariya’s immune system is still too immature to fight it off. Plus all this immunosupression I am on keeps my body from mobilizing to slam the CMV down. CMV is in 50 % of adults, a leftover from many common childhood diseases. Normally your immune system just handles it. Since I wasn’t responding to the first more mild med, they put me on a much stronger med which injured my kidneys, and required lots of fluids to wash it out–so that was three IV two-hour long saline fluid sessions a day. Luckily I did this at home. The med itself took another hour and a half, so that was a total of nearly 8 hours a day with “mini Herman”, the portable IV pump. The numbers came down to “very high” to “high”. Last week, I entered a clinical trial for a new drug which will hopefully handle the CMV without destroying my kidneys.

Trying to put my body back into some kind of balance is definitely the battle now. After an endoscopy, I was told I do have GVHD (graft versus host disease) in the stomach. The symptoms are a drastically reduced appetite, feeling of fullness after just a few bites, vomiting and even more fatigue. As the days have gone by, and the pounds with them, I have nearly given up on food and now simply force myself to take in 3 Ensures or protein shakes a day to get calories into my system. The drug they give for reducing GVHD gave me high blood pressure, so now they have had to put me on a drug for that. The other therapy is steroids. The pharmacy compounded a formula which goes into my stomach with a milliliter of corn oil. This steroid is not system wide, so it is preferable to a powerful drug that affects the whole body. If I get better, I may be able to escape prednisone, which has so many side effects that I get sad just looking at them.

Both girls have gone from our lives like the passing of summer. Mariya has returned to Tahoe and school. And Tuesday, with a mixture of tears and excitement, Elena began her trip to Peru. It took her 2 days of traveling . . .  made infinitely easier by a friend from Friday Harbor, who generously offered his house to her to spend the 10 hour layover in Atlanta. She is now in Cusco, in the shadow of Machu Picchu, an irony which is not lost on us, since that was our destination when all this began.  Cancer gave us the gift of “La Familia”. Now we go back to our lives—but with this profound difference in our collective memories—this shared battle, deep love and mutual experience of the past several months. We are not the same people who began this journey in February. I could not imagine the cancer experience without my generous and loyal husband and children. It frightens me that others do without.

My steps will continue to be a choppy cha cha. On the positive side of things: I can now walk for an hour. Since I had to fight for that, I say it proudly. But today was shaky, literally. My body would have used the words of one of my favorite children’s books: “a terrible, no good, very bad day”.  I—we—are all sick of this and want steady progress, but that’s not how it is. I am feeling strong enough to drive, but the GVHD fatigue is as bad as anything I have yet experienced. And on it goes.

This blog has not been my best writing, but it has always been honest writing. The aftermath of leukemia + transplant is bruising. Every time I start to express it however, a conflicting feeling catches me. I am ever so grateful to be cured of cancer by modern medicine, but also shaken by the treatment. It is difficult writing because it is complicated thinking through thorny feelings. Sorting it out will be the topic of my next blog.

Maybe it’s with this change into yet another season that’s brought me out of my writer’s shell—we have now seen all four of them from our lovely warm, safe ‘cottage’ in Seattle—-or the song birds that have made their appearance in the spring and now have moved south again—-or the greening after the rains and bleakness of February—the summer warmth and our little sunflower patch (thanks to Erin)—the autumn leaves rustling along the sidewalk and dancing down our neighborhood street as we three go out for a walk with our coats zipped up tight to our necks (actually Jack doesn’t wear one, but having been shorn at the height of the hot days in August, his winter coat is just starting to thicken).  At any rate here I am again with my ‘two bits worth’, after a long hiatus.

O gosh—– and so many trials and tribulations and joys and victories!  Daughters hanging tough with us for all these months and now both moving on with their young active wonderful  lives—Elena off to Peru and an ESL teaching certificate. If you have contacts of suggestions for her in Peru, for jobs or places to go , she’d love to hear it. Email us and we’ll get it to her. Mariya back to college in S. Lake and her home/honey/job & dog.  The successful blending of Mariya’s cells with Shann’s.  The anticipation, fear, fatigue, set backs and the myriad of ever changing pharmaceuticals are all starting to ebb back in to the ‘near’ but still rear view mirror.  It’s like the proverbial 1000 lb. gorilla (actually I admire gorillas a lot, maybe a ‘1000 lb. evil alien’?) that has been wrapped around us all, for these past eight months, that has let go of the death grip and we want to shout out “YEA”, but for me at least I don’t quite know how to let down my guard and rejoice—-too many hours/days/weeks/months of uncertainty I am battle fatigued and bleached out and tattered and not yet quite trusting of it now being a ‘downhill run’ from here on out.

We are optimistic none the less, and anxious to get back to our island home—-hopefully sometime next month (later in November or early December).  Jack seconds that vote, as the constraints of city living have fattened and curtailed him as well.  The steam of love and light has continued unabated from near and far—–poems from island, Portland and Alaska friends and family—-table cloth and napkin set from Fairbanks—cards galore from every direction urging, cajoling, enticing us forward—-goodies to eat from Hawaii and Seattle and our farm friends.   So many thought filled and  loving wishes, from so many corners;  I am humbled and warmed by those BTU’s!

We have recently been put on  a new antiviral–foscarnate (sp?) (every twelve hours for 4 hours of home infusion) that seems to have stemmed the advance of CMV, which was of concern.  The past two days we have been at the SCCA for many hours while Shann has gotten transfused with  whole blood and  immuno-globulins.

A week has elapsed since I wrote the above, and now we are up to 4 home infusions—our day from dawn to dusk and beyond, is pretty much eaten up with associated energies.  Shann struggles to eat and has little appetite and often regurgitates what little goes in—-that is the biggest bugaboo right now—keeping her from losing more weight.

Elena and I flew to Boise two weekends ago and met up with Mariya and Will and a whole gaggle of Porten/Ciani/Davis’s to celebrate nephew Dan’s wedding.  FUN to be away with extended family!  Women friends from the island took turns attending to Shann.  Then last weekend we did slip away to our island home for a couple days over the weekend;  first time Shann has been home in over 220 days!  We sat together by the pond quietly watching Jack ‘snoof’ around after frogs;  Shann met with her ladies group for a couple hours, and went for a great walk in sweet sunshine and I played/worked around the property and got out for 9 holes with my ‘buds’.  All in all a good restful time (minus the fact the transmission on our old van went out.).  We did get busted by our teams lead oncologist who chastised us mightily for leaving the ‘within 30 minutes of the hospital’ range.  We are now at a point in the post transplant (40+ days) when it is expected that her body will ‘wrestle’ with GVHD , which can cause her whole system to ‘go south’ in a matter of minutes, not hours or days!  We will be good ‘boys and girls—-“Mother may I’s” for a bit longer, despite our/my fatigue with the short leash.

That’s enough for one —I mean two— sittings.   Salude to all you Prince and princesses (ala Cider House Rules).

Porten Sr.

A correction, since it is now impending. Elena leaves for Peru next week, not in March. I suppose that was another sneaky chemo brain mistake on my part where for for some reason, my hands type March while thinking October.  A sense of excitement fills the house whenever she walks in. Her program looks great, a month of intensive classroom experience teaching English, which will allow her to go anywhere in Latin America and have a skill they want. Her personal goal, to be totally fluent in Spanish, will be fulfilled by her daily interactions.

I will deliver the critical news first, like a headline.

Bone Marrow test shows no cancer; all white blood cells are from donor.

That is the truly good news I have to share. That means no mixed “chimerism”. In my bone marrow, there is no trace of my old cells. It is just Mariya’s cells doing their work, leukemia free.

I can’t say it’s been easy… but considering all the scary things they tell you of the things that could go wrong, I feel so damn lucky and grateful.

I know it’s a long time. I had the intention and even the need to write. For the first week, I was teased by feeling pretty good. I thought to myself, is this it? Have I somehow escaped the side effects? I am thinking this as I am running my hand through ¼ inch of soft downy new hair. The next morning I notice most of that hair  has landed on the pillow. By the next, I am once again totally bald. I was told this would happen, a result of the last chemo and radiation. No. I am not going to escape the side effects.

There followed the flinty all-encompassing period of time listed in the literature as “fatigue”. After 7 months of this, I have found there are layers of fatigue, and I am talking about one of the very bottom layers. I wanted to sleep nearly 24 hours a day, and had to fight for the ambition to do anything else but that. Standing up would make my heart race and blood pressure drop or jump to the point of feeling like I might faint (and sometimes I did.) So even getting around the house meant walk a few steps –sit, walk again, sit and then go lie down. One thing I did do for some reason that I cannot articulate, other than I needed a huge graphic story of the human condition, was watch nearly 60 hours of documentary and mini-series about World War Two, (Ken Burns: The War; Herman Wouk’s The Winds of War and War and Remembrance.)

During all this time the docs were calm. They aren’t a real communicative lot. They could have said things like –“well, of course you feel terrible, you have a stiff case of anemia!” Or, “look at all these drugs you’re taking and their side effects. Fatigue is top of the list of every one.” What they did tell me was the blood tests looked good and I showed no signs of GVHD. The only thing they worried about is the return of the CMV which should subside with antibiotics and the strengthening of my new immune system.

A few days ago, I woke knowing that I had to grit my teeth and go against the inclination to rest all day. Participating in the life of the world was a tremendous struggle at first but it’s gotten easier. Though Fatigue is still very much present, it no longer rules my life with such an iron fist. Slowly I am building stamina once again.

Eating remains a challenge. On the plus side, I have an appetite and no weird taste effects or nausea. But on the side of anorexia, I weigh 110 lbs., and my stomach has shrunk to the size of a walnut. Plus eating takes energy. The girls have been diligent; alternating stern lectures with deliberately eating in front of me, making helpful yum yum noises, and whipping up calorie and protein rich foods that are easy to get down (a shake made by Elena delivers about 700+ calories, Mariya’s cashew-based soup innocently slides more than 500 calories down my gullet and Steve’s Grand Old Diner serves up the standards, like bacon and eggs with toast and lots of butter. Since no one else eats this way that I know of, it is a bit weird to focus on trying to gain weight.  I don’t have time to mess around with anything that doesn’t pack a big caloric punch or I will lose more energy than its worth.

Time for the 2^nd Headline:

Mariya returns home to Tahoe, after 3 months in Seattle. Elena is going to Cuzco, Peru in March.

This week felt like closure. The graft has been successful! I may have CMV and anemia and other temporary things, but I don’t have cancer. It’s time for Mariya to return to her home and back to her life, starting with a certificate in Personal Training and moving on to a nursing degree. And we are all delighted that Elena, who put her plans to go to South America on hold when I got diagnosed, is going to Cuzco, Peru to get classroom experience and a certificate teaching English and working at a hostel. Her goal, for years has been to get perfectly fluent in Spanish, written and spoken. So, she is going, alone on an adventure and the three of us couldn’t be happier or more proud.

I am left with the simple monumental task of getting well again. Re-learning the basic skill of learning to be social, after so much time in isolation or just with family.  Being able to walk enough to fill my soul. I am eager to regain the carelessness of life, not being so fragile, or so metered with my energy.  Go slow, my body will remind me. This next part of the healing process opens the package of long term side effects and looks inside. I know my body and mind have taken a beating. I know I have miles to go before I feel “normal”. Just trying to get grounded and stop thinking things like “why are the pumpkins out, isn’t it still spring?” will be a big step toward belong in the world again.

Ok. More coming and in a more timely fashion. I will just end with one little happy dance and the title to one of my favorite songs: Gracious a la Vida (thanks to life).

“Health? It’s right over there”. Just get to the horizon and look for the next one.