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.