I already know that answer:  Its, some of both!….I wrote this next section a week or more ago—It still holds’ true.—–“So far today, I’m a S.O.B..  Its 9a.m.  and I am in that state of mind that my guy friends refer to as,  Porten’s pre-verbal time.  I don’t want to speak to anyone, or interface with anything beyond what I want.  “World, stay at bay!” and I will decide who and what ‘gets in’.  Today all I want in, is NPR’s Weekend Edition and my coffee.  I have already given poor ole sick, weak Shann, the cold shoulder, with a “not yet, not now!”

It’s a head space that sometimes over-rides my generally helpful and empathetic  and present, self—–we’ll call that, the saint  part of me (SPOM).  The SOB Land (SOBL), is epitomized by  a withdrawn nature, cheeks withered in, shallow breathing and regular deep ‘sighs’.  The mornings for some reason (perhaps its the freshness of a new day bumping up against the reality of cancer?) are almost always the rawest periods of the day for me—-Then, and again when I am lying in the front room reviewing the day, after ‘tucking‘ Shann into  her bed.   I’ve been reading Hesse again after a 4 decade hiatus, and at a page a night before I fall asleep, it will take me to Thanksgiving—–at which point if all goes well, we will be able to move away from the 30 minutes radius  of UW Medical Center —-talk about a sobering reality check!

Ok—–am looking over the kitchen table now, at  our life (I know its way bigger than this!):  The Neupogen single jet syringe’, the alcohol wipes, UW Physicians bill, pill canisters, tapioca box, tissues, notes on transplant data, nieces graduation notice, the vase of plastic flowers (real ones aren’t allowed in our living quarters), and I give out a big sigh.

It’s time for a 2nd cup of java, as I pull myself around the corner and into transaction with the day.  Its time to cajole Shann into eating and drinking something/anything!   The most basic things now have their own challenges.  The drip bag for hydration (I have renamed it  with my own verbiage—‘irrigation’ ) is awaiting—–250 mg per hour for 4 hours, with a little potassium added  to keep that important element in balance.  Then a trip the SCCA for a blood draw and the  90 minute wait to meet with the nurse and the report on what the lab results are…..and so goes the day.”—–

The above was  written some, many days back, and things are more or less at the same place for us.  It reminds me of the sage words from a mom of about my age, who has been through this for over a year now with her 20-something year old daughter: “Every day, no matter how bad, brings us one day closer to health—You have to think of it that way, during the hard times!”.

I suppose I should try to add  equilibrium to this, with some sign  that I actually have a counter balancing SPOM.  Food—-Its always been the Porten way.  If you are sick, heart broken, leg broken, in love, depressed  or out of work—-We’ll fix your some food!—I do that, and clean up, and shop, and order drugs, and rub her back, and cuddle with her to watch our evening show—West Wing’, and hold her while she ‘chucks her cookies’, and make sure the Dr’s ‘get it right’, and that we make the multitudinous appointments more or less on time, and that some physical movement (even if  its just around the corners of the cottage)  happens, and the bills get paid, the drugs get taken  and the——holy smokes I AM A SAINT!—-at least a part time one J.

Cheers all—-Porten SR.

Ps  Eldest daughter and partner are joining us this weekend, and will be here with us as we go back into the hospital for Round IIIB on July 5th, and then to July 30th when the front work gets started,  in preparation for the haplo stem cell harvest and transplant in mid August.  Its good to have us four together for these next months—Jack is here for awhile too, down from our island home (our rag a muffin four legged). These have been ‘trying’ weeks, as Shann’s health has been steadily zapped….It’s very hard to watch and for Shann even more difficult to endure.   Our friends are the steady rock that we are now leaning on.

Listening to my daughter Mariya’s Healing Hymns, tears come as expected. So many gifts I have been given by so many, and I have not even had the energy to say thank you. Since the last blog post, I have been in a dark cave. I am beginning to emerge but I can’t deny where I have I have been.

What the doctor called “chemo induced gut damage” was hours and hours of nausea and throwing up. I lost track of days. I only knew my body was shrinking in front of my eyes. When I could get past the gag response to food, it stayed uneasily and barely. Round 3A stalked me; the slightest walk made my heart pound, energy was something that seemed like a distant memory. All I knew was fatigue. Steve and Elena nearly went crazy trying to get me to eat and drink. Finally, with my electrolytes out of whack, we resorted to nightly hydration with potassium-enriched saline dripping into my central line.

This helped. I was able to keep food down, though appetite is still something I am working on. I have found out that at 114 pounds, I am rather too accurately skin and bones.

And yes, I lost perspective and hope and no, I wasn’t able to hold onto all that I know can be true. I just curled up into it, and went beyond anyone’s ability to reach me. This was a cruel thing to do to Steve and the daughters, and I knew it. I just couldn’t seem to help it. Full of doubt and confusion, I felt like giving up.

You know how a blue sky can slowly emerge out of rainy clouds while you aren’t paying attention? It’s raining and dark and then unexpectedly, a little bit of indigo nudges the gray over. And before you know it, the day has changed, and the sun shafts down and the difference between shadow and light becomes obvious.

One of my favorite cards strengthened me. I described it in one of my early posts; here it is again: It is of an exhausted Hawaiian in a canoe   surrounded by endless rough seas. As he slumps in the middle seat, two spirit angels take over bow and aft with strong arms and clear direction. All I can feel is being in the middle seat now. But everyone else; my family and friends, my angels and own spirit are steering the boat. And just like that sunny day emerging, I am seeing this again.

So, here I am, recovering from a round of chemo that felt like it very nearly killed me. My doc doesn’t like the weight loss but he still thinks I am doing well. My white blood count has already bounced back. My main job over the next couple of weeks is to recover weight, strength and perspective.

We have been watching Doc Marten. If you have ever seen even one episode, you know how entirely without social graces he is. Well, Steve—my Caregiver, husband, friend and long-suffering nurse, I have been your Doc Marten. Nothing has been fair, and this is just as hard on you as it is on me, but being gracious about that has often been beyond my grasp. I am gluing myself back together. There’s just a lot of little pieces. It might take awhile.

The road ahead is still long and scary. We are going to go with a Haplo transplant. We have been told by the leading expert in the field: “I would be comforted that Seattle is the best place in the world for this and this gives her the best chance of making it through as safely as possible. I think you four are making the right decision and you should go forward with confidence.” Hopefully we will get a date set soon. Of course, I still need to get through 3B.

I am holding the image of healing and health. That I can do this again is a good thing. There’s a place I want to go back to in Scotland with Steve.

View from the treadmill on a rainy day.

Last Thursday morning, after 4 days in the hospital, I wrote a draft blog post that stated “I have not forgotten that the days immediately following chemo are often the worst—the worst nausea, the worst fatigue and fragility due to PTSD. I try not to anticipate it but I also know from experience what to expect.”

But I had forgotten. And, also, I hadn’t factored in the full impact of the 3^rd round of Group A chemo alignment on a weakened system under sustained attack. Group A is a heavy hitter: a 24 hour drip of Doxorubicin, 6 doses 2 hours each Cyclhophosphamide (cytoxan), steroids and the push of Vinecristine. Then there are all the medications to protect you or repair you from the chemo, basically. And the shots, both of which I have learned to give myself in the stomach; once unimaginable.  One to prevent blood clots in the hospital and one at home to boost white blood cells. Funny skills to have, but I learned not to say I can’t do it when I had babies and also that any time you are asked to do things you think you could never do, somewhere, somehow, you find a way to do it

Hospital days are exhausting for both of us.

Anyway, by Thursday afternoon, I started feeling bad in the hospital in the last hours before they released me. But I held it together until we “escaped.” When we got back to the Cottage, it was clear that I wouldn’t be keeping anything down (thought I would phrase that delicately, though delicate process it was not.) That night, the Doxorubicin burned through my body like a late summer grass fire. We almost turned around and went back into the hospital, but the doctor on call suggested we try to keep the fever down with Tylenol. This we did—or rather Steve administered and worried and tracked while I rode the ups and downs of fever.

The next day, feeling like a wounded animal lying deep in the brush, I hardly moved. 24 slow hours of lying in bed, working with Skeleton Woman to ease Hospital/Chemo PTSD, rebuilding my Self from the inside out. Slowly, the fever subsided. The nausea lessened.

On Sunday, I felt good enough to go with Steve meet Elena after her 11 mile run on Mercer Island. We walked at Luther Burbank Park and ate ice cream and enjoyed the beautiful June Day. I need those moments, just to be out in the world and re-myself stitch into it again. It is surprisingly easy to go around in a disembodied state . . .  too easy. You have to work to bring yourself back.

The fatigue has been hard, If you have ever had anemia, or worse, you know how challenging this can be, if you want to do anything but lie in bed.  I had a set back yesterday when I couldn’t keep food or drink down. I keep reminding myself “food is your friend”. I was always a good eater and loved my munchies, but I sure have a different relationship now with food. Without appetite, and with chemically altered flavors and a general metallic pervasive taste—eating food has become a duty, a chore—I must accomplish everyday, for the sake of my health.

After last month’s long trial with fevers and scare with the dangerous neutorpenic fever (where you have no immune system to protect you), I regard the month ahead with caution and full awareness of what is still before me. Isolation will continue to be a hallmark of my days, though the out of doors is open to me, just not crowds of people.

There is no matched donor for me. A matched donor would make all aspects of recovery and survivability better. But not everyone gets that. And I am one of those. So, we are trying hard to thread through the choices of cord blood vs. haplo. (daughters) The differences between the two are subtle, not well documented at this point. Though we have been invited into a randomized study, I have come to the conclusion I want us to make the decision, based on the best advice, which will probably boil down to “we don’t know which is best”. Studies in hand, we try to tease out things like . . .  is it better to have a long and scary engraftment time (time it takes for new immune system to begin in your body–up to 30 days) with cord blood or a slightly higher chance of possible relapse in the future? Which gives the better chances or less acute or chronic graft vs. host disease in the years to come, thus better quality of life? The docs say if they knew the answer, they wouldn’t need the studies. How is that for a puzzle to work through?

In the end, the four of us, our little family, will have to sit down soon and just make this decision, based on the best advice we can get. I think so, far, we are leaning toward haplo and Mariya has the best match by one more thing (no idea what to call it) that they try to match up. I think that will be our direction.

Working with home health care nurse for home hydration.

So I have 2-3 weeks to be “out” and try not to go back into the hospital, walking twice a day in the never boring streets of Maple Leaf and various parks. My job right now is to try and not lose more weight, stay away from infection and regain some strength.

Sometime, after my white blood cells come back, at the end of those 2-3 weeks, I go back for one more intensive chemo hospital stay, Group B, Round 3. I am not sure how it goes from there. They may keep me in and go right into the even more concentrated 6 day “Conditioning” or Preparative chemo/radiation, where they kill my immune system.

Sometime in late July, we think—I will get my little bag of my daughter’s stem cells, and a simple transfusion will happen…and then it is all a waiting game to see how my body reacts. I have heard both horror stories and “no problem stories”.  All depends on every other factor, my health and will, the skill of the doctors and nurses, the Great Spirit and Angels, and the loving community that surrounds me.

As for me, I will be dancing on the edge of the world, walking the line between the Great Unknown and the very focused and detailed regime. When I have extra energy, more and more rarely, I am nourished by my love of frontier science, the beauty of the biosphere and quantum physics. Buddha, Jesus, the, Upanishads –and poets of all kinds run through my brain with all of it. The majestic spread of branches from an old tree lifts my heart—the representation—I am sure, of the Tree of Life. This enduring image will be with me everyday I am in the hospital.

I still concern myself with elephants everyday. They are one of many symbols for what humanity has agreed to trade away for its own self-vanity. Wild elephants have been with me on this journey since it began. Last night, as I went to sleep, I could sense the passing spirits of the great African matriarchs, touching me gently as they moved into the Great Spirit’s realm. I swear there was gratitude for the simple act of not looking away. For any who are interested in this work, I recommend the organization Elephant Advocacy http://www.elephantadvocacy.org/ and https://www.facebook.com/elephantadvocacy

They don’t shy away from what is happening but they also have some beautifully written pieces about the process of humanity waking up. If elephants aren’t your passion, you can interchange any other way that we need to wake up. And then, commit yourself to what actions you can take and witness it without flinching, so the consciousness of the world, and most especially, those in the line of attack, will know that someone cared.

If anyone wants to go “out there” and really see where my mind is clicking these days, check out Inner Worlds, Outer Worlds from Awaken the World on You Tube. You can watch it in 4 parts, which I recommend, because it is a lot to take in. I guarantee it is more engaging and heart enlarging than the daily news and grind would ever let you know. https://www.youtube.com/watch?v=08CnDSQelNg&list=PLD8E5F0D70B62BEFE

Oops! Guess I went off in a lot directions! It is fair representation of days spent without job, commute, TV, or socializing. There are days I am barely hanging in there, and days when my mind and heart just go out joyriding in a huge interior world.

Bottom-line, I believe I will survive this. I will really need and welcome prayers and intentions and good energy to take into the transplant process.

This poem is from one of the wonderful cards that have found their way to me. This is my intention, my goal, and my focus for life after transplant.

“Afoot and lighthearted

I take to the open road,

Healthy, free,

The world before me.”

Walt Whitman

The last two weeks have been hard—in and out of the hospital, and crisis mode. Mostly what I have hated about it is the way I feel like I have dropped out of communication mode. Even today, trying to get this post out, I am low on energy, and I don’t know if it is an infection, the antibiotic or low red blood cells and barely have the energy to get through the most basic of tasks. But on Memorial Day, the SCCA is short staffed and we made the decision to wait until tomorrow. I hope we don’t regret it.

To catch up, we definitely learned that my body does not like the chemo drug, Cytarabine. It gave me a two day fever following the hospital exit on May 8^th.

Five days later, I went in for my 9^th spinal tap—not 5^th or 6^th as I originally  said, where Cytarabine was injected directly into the spinal fluid. Anyway, I felt fine after—for awhile. Met up with friend Sean Ochoa and the girls, ate dinner. And then, abruptly, I didn’t feel fine. “Must go” I whispered to Steve. By the time we got home I was getting blinding pain from any source of light, even the night light. I literally could not do anything but crawl into bed and shield my eyes. The sharp stabbing pain intensified the next morning; making me yelp out loud when contacting any kind of light. To function at all, I had to wear two pairs of sunglasses and an eye patch over the worst eye. The doc suggested steroid eye drops. After dropping them in, hour by hour, things slowly improved, until I was able to go out into the day with only one pair of sunglasses. A few more eye drops over time  and I was over my 2^nd chemo reaction to Cytarabine, a drug that is known for this photosensitivity pain.

Funny thing is, every time we called the hospital, looking up the side effects of the drugs seemed to be our job. Their job seemed to be to freak out, assuming infection, and want us to come in immediately. When I become a transplant patient, we won’t muck around. If they want us in, we go. But for now, it does seem worth it to argue back an immediate trip back to the hospital over a drug interaction that they should know about. 

Anyway, three days later, May 17^th, was the date of the Fabulous Fundraiser. I will come back to this amazing event. While all of that good energy flowed my way, I found myself in a sudden and immediate need for both a blood and a platelet transfusion. So, on that same night, when the community gathered, Steve and I waited for hours while the blood products dripped slowly into my body. Wait, that’s not meant to sound miserable. It really wasn’t. We went home late and assumed I would feel better.

But by Saturday, the next day, I developed a Neutropenic Fever(meaning my white blood cells were at zero, so any small thing could become very dangerous quickly), with a resting pulse of 120, and I was admitted into the hospital.Because my immune system was at zero, they were very concerned. After a battery of testing turned up nothing, the docs let us go home the next day with an IV antibiotic. Only problem was, it didn’t work. By Sunday—yes the next day—I was back into the hospital. There I had more tests to find the source of my twice-daily fever spikes. They tried hard and unsuccessfully, to find the source of the infection. An abnormal CT scan led them to suspect pneumonia. but after a Thoracentesis to withdraw some of the fluid from the lung, which came up negative, they ruled it out.

In the middle of all that hullabaloo, my body starting making white blood cells again, something I do not take for granted because there are people on the oncology ward whose bodies don’t do this easily. I wasn’t tethered to Herman, the IV Pole—and so acknowledging my growing restlessness, the last couple of days they let me go outside on walks with Steve, on the UW grounds, which were lovely and rich and graced with barn swallows flying low all around us and big stately trees that sheltered us from the rain showers.

But by Friday, I was over it. When they wanted to do a swab for upper respiratory infection which would have put me into isolation for 24 hours, we argued that they could do the swab and then release me immediately to do the “isolation” from home. We were relieved when they agreed to this. Antibiotics in hand, we gratefully left the hospital. 

The fevers have not entirely gone away. Before I sent this post, we made our trip to  to the SCCA. The numbers  (all my blood work) show everything looks good for the next round of chemo, 3A. It is currently scheduled to start  this Sunday-a 4-5 day session, . The fact that we haven’t found the source of fevers didn’t bother our doctor particularly, she told us that in 60 to 70 % of the time, they find nothing to explain them. She took me off the antibiotic I was on, which was packing quite a “feel bad” wallop. She also used the word “battle weary” to describe people in my stage of treatment. “That’s a good description,” I told her That’s exactly how we feel.

Funny how the spells between chemo remind me of the fragility of our lives: the red blood cells that give us the simple and precious energy and oxygen to carry out our days. Platelets keep us from bleeding out every time we cut or bruise ourselves. White blood cells are like a coat of armor that allow us to go into public. Lose any of these, and this past two weeks, I have lost each one temporarily, and you can’t function. One drug interaction and I am suddenly blind. A normal temperature is something precious to experience. No chills, no sweats. Just good old 98.6. It never looked so good.

And now that mine are just about gone, when is the last time you stopped and really appreciated your eyebrows and eyelashes? Such marvelous things we take for granted.

Meanwhile, while we essentially “dropped out” with all of the above, a most wondrous event unfolded on the island. Daughters Mariya and Elena went to the island, with a mixture of nervous anticipation and eagerness (sorry I don’t have any photos of them but there is a youtube link below); knowing that they would be received by the full force of island community; feeling a combination of dread and excitement to be back at our island home for a few days, wanting the fundraiser to be successful and fun;  wanting to be truly present with people . . .  it was a tall order and they knew it. But the alchemy of the night was in a word, astonishing, and something our daughters will never forget. Steve and I got enough photos and movie clips to at least get a taste of it it in remote form. But what we felt was like a like a beam of healing light radiating from a small island in the Salish Sea. No matter where we were: blood transfusion, back at the cottage, at the hospital, it caught us and lit the way. Beautiful, overwhelming, awesome–all words fall short.

There is no way for us to adequately express our thankfulness and appreciation. We are, all four, humbled, awed and understand that this is something to be paid forward in the World. A gorgeous Prayer Wheel sits on our table, written blessings around it like leaves from an autumn tree. Our community, family and friends, we bow in deepest respect and gratitude to you.

P.S. These are the lyrics of the song For All the Good People, This was my message to all assembled and all others who are part of our extended community and family., The two YouTube clips are of the daughters delivering my message and the community singing the song.

. http://www.youtube.com/watch?v=LjVfmvIhDYU  and http://www.youtube.com/watch?v=OIKT68T6hm0 K

Shann’s intro to “All the Good People”

***   I fell in love with this song many years ago when I first heard it on the radio, sung by Fed Holstein, a grand old folk artist who loved to sing with people in friendly gatherings.

This seems like a perfect opportunity to share it with you. I changed a few words to make it truly a message from my heart to you.

In ways you know—and in ways that are invisible—YOU are the place I come from—and I address all the people in the room and all the people not in the room who have created Community and Friendship with me. As a family of travelers, we have often received extraordinary insights and kindness from chance encounters and powerful wisdom and generosity from those who have rarely left their home.

These days, I am communing primarily with The UW Medical Center, the Seattle Cancer Care Alliance, Seattle neighborhoods and parks, my amazing family and the Great Spirit. Your strengthening, comforting and wise words come to me via the computer—it is my gateway to the big world and your life. I am blessed by this, and grateful.

Thank you. Two small words will have to do for the immense feelings in my heart. I know I speak these words from Steve, Mariya and Elena just as strongly as we have been washed by your love and friendship.

This is a song for all the good people! That’s you! Sing it to each other.   ***

For All the Good People

Original lyrics by Ken Hicks, sung by Fred Holstein

Chorus: This is a song for all the good people
All the good people who touched up my life.
This is a song for all the good people
People I’m thankin’ my stars for tonight.

This is a song for all my companions

Who knew what I needed was something they had

Food on the table, a heart that was able

Able to keep me just this side of glad.

This is a song for all of my good friends
Who shared up my time, and good times we had
We sang round the fire and shared no competition
Each knowing the other was a good friend to have.

This is a song for all the travelers

Who passed through my life as they moved along

Gypsies and tinkers, ramblers and thinkers

Each took the time to sing me their song.

This is a song for all the good people
Singers and healers I dreamed of at night
some helped in all ways,
some helped in small ways
Some always told me I was doing all right

I was listening to NPR a few weeks back when I heard a story about some American rural town that had been devastated by some ‘bad’ thing (I can’t recall what it was?) and those words above were used by one of the townspeople, who went on to talk about how folks there had spent a lifetime living and being there, in a sense “building a levy against life’s high and low waters”.  They went on to talk about how the ‘levy’ they’d built collectively over time, against the woes that are sure to come in life, WAS HOLDING.

Well, I just want to give a ‘shout out’ from our Cottage in Maple Leaf, that the “levy is holding”!  There are so many heart-warming things that have come our way, as we finish up with our third month here and our wrestling match with the difficult maze that is “cancer treatment”.

At Carkeek Park

We are just now finishing up with IIB, the 4th chemo cycle, and have recently learned that we will go through at least two more rounds (about 3 weeks per segment), before we head into the ‘conditioning’ for a yet heavier whack of chemo to kill off Shann’s T-cells (they might get in the way of allowing the introduced cell transplant to ‘do its thing’ —-which is; kill cancer cells that the chemo hasn’t been able to reach).  How’s that for a run on sentence?!

Moving right along here; After 6 or 7 more weeks of chemo cocktails (I do my own near daily gin cocktail, out in the four wheeled “office” parked in the driveway—our trusty road warrior van the 95’ Econoline)—I can just see my old, and by now quite dead, English teachers pulling their hair out  with frustration, at how uncouth my sentence structures are!—-so, where was I?—after two more months of chemo +-, we will be heading to a stem cell transplant—Shanns ‘Ph+ A.L.L (Philadelphia chromosome positive acute lymphoblastic leukemia) requires it (or so says the best  guesses by the best minds present)!?

We don’t have a related or unrelated donor at this point –or on the horizon—that is a sufficiently good match.  That puts us into the world of choosing between umbilical cord blood (and there are some good cords already marked for Shann) or ‘haplo’ donors (half the right number of chromosome matches—ie one of the daughters) transplant possibilities.  It’s confusing and weird and technical and still new enough that we will most likely become part of a clinical study (read that: experimental/ “I don’t know the answer-ville”).

When we get to that point we will be writing more about it all.   Bottom line is that when we get to the transplant part of this ‘dealio’, it represents some finger-nail biting times for some many months, while we watch for how well Shann’s body accepts the new/foreign cells and we stay on guard for GVHD (graft vs. host disease).

My head is spinning—sometimes my heart too!—Both daughters are enroute as I write this, to the island to be participants in Fridays fundraiser—so many people, pulling , donating, working  on our behalf—it’s “choke you up with humility and love time”, for the Porten-Westons!  Whoever it was (Jesus I think) that said it’s more blessed to give than receive was no doubt correct.  Having said that, I hasten to add that being on the ‘receiving end of the line’, has /is being a major challenge for me to do with grace.  I guess that’s part of ‘this journey’ for me as well.  Bottom line:  So many thanks, to so many, for giving us so much!

Me, looking like one of the Supremes, with my Mother’s Day gift.

I am overdue for a touch in.  Round 2B has come and gone, so that’s 4 rounds of hospital chemo. The day after I leave the hospital, I need sleep like a suffocating person needs air. Skeleton Woman had her hands full restoring the basic building blocks of daily living before I was fit to see anyone.  Luckily, by Mother’s Day, I’d recovered enough to meet up with Elena on Queen Anne for brunch, never dreaming that Mariya would surprise us as well! The three of them perfectly orchestrated the day’s events so that I was properly speechless and amazed at her appearance. I knew she was coming later this week, but she’d changed her plane ticket to come on Mother’s Day.

I was very thankful to have the ability to walk down the genteel avenues of Queen Anne Hill with my family, look out over Seattle and the ferries coming and going, admiring the stately street trees and landscaping and just be upright and in the world. We take it all so for granted. I do, even during this illness, I still have to be reminded frequently to be awake and to let the world truly enter my personal walls. I want it to soak my cells. Help heal them with its living energy. But I have to let it all in first.

A little story: Steve and I had been at the hospital for all of 15 minutes when he cajoled me into taking an “untethered” walk in the hallway. There is always a grace period of an hour or so before they get you hooked up to “Herman”, the IV Pole, and your first rounds of hydration or chemo. I was still in my stoic realm, having left the sweet warmth aliveness of the day and exchanged it for the cold sterile walls of the hospital. Carrying myself a little resentfully down the hall, I could feel a cold ball of bitterness inside my chest, and I knew I was thoroughly wrapped in my own personal drama.

A woman came out of one of the shuttered rooms. We have seen her every round at the hospital. I judge her to be younger than me, in her fifties. Her 20-year daughter has the same disease I have. The mom greeted us warmly and told us they were leaving the hospital at the same time we were entering. Her daughter is not doing well. She has not responded to the chemo; her white blood cells refuse to climb back up (mine bounce up quickly) and there are no stem cell donor matches. All of this, she tells us, with a mother’s courage and need to be strong that has soon has me wishing I had Herman to lean on. I feel the threat of tears and I know it is the last thing she needs, so I command them back. With options running out, her daughter will get a cord blood transplant later this month. There is no need to state that it will be chancy but you do what you have to do. The mom stands there dry eyed and strong, I give her a long hug and hazard a few words and we leave her to this Herculean task.

As soon as we rounded the corner, I crashed and cried as openly as I have on this whole journey. In a heart’s moment, I had been taken from my drama to our collective journey.  I was shaken and cracked open by her love and strength and once again, I know this is not the worst thing that could happen to me. By the time we lapped around back into my room I composed myself but the openness in the heart stayed large. People do what they have to do. Courage is common. Love is bigger than doubt.

Later, sitting in a hospital bed, hooked up to getting one of the most toxic Chemos—methotrexate (the one that has to have leuvovorin, the methotrexate “rescue” to stop it from killing you), thankful for anti-nausea meds and Pandora and Bob Dylan, I reflect on “Chemo Brain”. I always think it is a bit amazing that your own chemically damaged mind can reflect about its altered state. I am also on steroids and so my thinking bounces and skids between the most mundane of topics to half-finished esoteric ramblings. I can’t even really describe what Chemo Brain is like, but think of it as a foreign landscape where normal foot trails morph suddenly into conveyor belts going in another direction and the ecosystems of your world have a dream-like quality where things don’t match up the way they used to. Quite Alice in Wonderland. And then there are the big voids you fall into, where essentially you check out, and you don’t even know you are there until, minutes or hours or days or weeks later, you crawl out and hope that you didn’t miss anything too critical (sometimes you do though). I wish Chemo Brain was just being forgetful, I could handle that more easily.

What’s next? I have a virulent disease currently held at bay by strong chemicals, research and the best of western technology. I am right on the hinge of history with leukemia. A few years ago, there was no chance for someone like me. A few years from now, I am convinced that all this chemical bombardment will be replaced with the very research that is rolling out of the Fred Hutchison Center. We should hear today if there is a donor. Tomorrow we meet with the oncologist (for my 5 or 6th spinal tap–I’ve lost track..) and the first of the transplant people. Now come all the decisions before us. Which donor, if there is one, and what kind of transplant. Do they give me a “mini”, which means they bombard me with less poison before the transplant or an “ablative” which means super high dose chemo? Decisions hinge on my age, my health, the weight of research on things like relapse and the incidence of “graft versus host disease”, a term, I fear you will hear more about. Do I go through another round? Round 3 of Groups A and B? That’s another month of this “hit and recover” stage of chemo, then the transplant. Many of the same nurses work both the oncology ward and the transplant ward. Their faces and their responses tell me transplant will be harder than anything I have experienced so far.

So, simply, I don’t know anything. I will, sometime soon. What I do know is that I feel like a novice being prepared for . . .  something. Without my easy prop of tangled wavy hair, and as my eyebrows and eyelashes slowly disappear, the word “lean” keeps coming forth. I have lost 20 pounds and 6 dress sizes. (I can’t recommend the diet though.) I am lean, in some elemental way I have never known. I can stand on the edge of this present moment and not teeter, even without knowing anything. I never could do that before.

We have gotten many generous and gracious offers and suggestions for donating stem cells. Like you, it makes sense, at least from our rudimentary knowledge of genetics, that a similar heritage leads to more possible matches. But turns out, there are still so many variants that a good match is still very very difficult to find. Testing to see if it might match Shann’s typing would have to be done by a private lab, at a cost of about $250 per test. We’re told, that even if your heritage is similar, that having the exact genetic variants to help Shann, are slim. Shann has a rare allele called HL_DRE3 , and this is the one that is hard to match. They are doing some further testing on Mariya and Elena (who are not good matches) to investigate this allele and its properties further.

So the bottom-line is basic: Here is the web site with all the information.

‘Be the Match’ http://marrow.org/Home.aspx

It is set up for people to become stem cell donors in a world-wide stem cell bank.  It is a great thing for anyone who wants to be a stem cell donor to get on this registry, with the knowledge that they are offering to donate stem cells for a person in need anywhere in the world.

Given what we now know about the world of stem cell transplants, we would like to again encourage anyone over 18 and under 45ish+- to sign up as a potential donor (especially if you are of mixed African/American, native  American or Hispanic blood lines; because those groups have very low donation rates).  It costs you nothing; it’s simple and easy, and it could well save a person’s life.  Also a good time to remind ourselves that giving blood is a gift of strength and life, from you to someone who needs it.  Finally, donating or asking your pregnant friends to donate the umbilical cord from their successful birthing can provide life sustaining blood cells for those without good stem cell matches.

The main thing now is to thank those of you who have asked and been willing to donate stem cells, especially on the possibility that your similar heritage could make a difference. It is deeply appreciated and the best thing you could do is to get on the Be the Match Registry, if that idea moves you. Thank you.

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.