There and Back Again


Gasworks Park.

Reflection is something that comes easily to me but last week was so dreamlike that my thoughts and memories about it are equally surreal. You, Google, and I all have a picture in mind when we use the term “a near death experience”.  I don’t know what to call a casual recognition that I could have died last week. It comes and goes, along with musings, like—this is how so many women died in childbirth before modern medicine. They bled to death. And I could have done so too, with a blood pressure so low that it causes organ failure and a rapid pulse that wears out the heart. I look back on it, how I went from “fine” to “not fine” for a few days to “emergency” abruptly without pain or trauma and observe that I was on a downward slope with a free fall at the end but for intervention of a modern Intensive Care Unit.

The week began easily enough. I was enjoying walking and visiting with friends. I will spare you the grittier details but I got a GI (gastrointestinal) bleed. I had no idea how precipitously that would lead to the situation above. Only in hindsight do I realize I lost a fair amount of blood. At the same time, my blood pressure started being consistently low enough for me to feel a bit light-headed and my pulse hovered around 125. On Tuesday, I went to the SCCA and based on my blood work results, got 2 units of blood and another unit of platelets. It is common to need blood and platelets after chemo.  But by Thursday, I could barely make to the bathroom without passing out. Back to the SCCA for more blood tests and this time the results were alarming. My red blood cells and platelets were scary and dangerously low. My white blood cells were nonexistent. Acting quickly, the doctor called the ICU and told them they had an incoming patient.

WP_20130718_001And suddenly there I was, in the ICU, which was a very different experience than the oncology floor. Stripped down, given back a simple gown and then essentially hogtied to the bed with tubes. Everything was monitored. Resistance really was futile, and so I surrendered while they worked on me like mechanics over a failing race car and received another 5 units of blood in the time it normally takes to get 2 and another 2 units of platelets. Meanwhile Steve and first Elena and then Mariya sat by and were simply present as they had no role in the ICU process.

The rest of my story is simple. After the infusion of blood and platelets to keep me from continuing to bleed out, I came back to life. I actually felt fine again. After one night at the ICU, they put me back on thWP_20130719_027e oncology floor.

This next part reads like a novel where the characters encounter one intense challenge after another. Mariya came to hang out with me and on the way home she was hit by a drunk driver who crossed the center line on 15th Ave. Luckily, she was driving an Explorer and therefore much taller than the Mercedes that hit her. People had already called 911 before her trembling hands made the call. She said her first reaction was pure fury because if she was injured, she might not be able to be my donor.


Survivors! And yes, that’s a wig I’m wearing.

She and I frequently remark to each other about our angels. Both of ours were working over-time. Mariya emerged with minor injuries. The drunk woman was arrested. Unfortunately, the car Mariya was driving (her cousin’s) was totaled, but insurance will deal with that. The next day I was released early from the hospital, in part because my female doctor and PA were mothers who understood when I said “if you keep me here, I will just be a nervous wreck. Cancer takes so many things away from you but the one thing I can still do is go home and be a mother.”

And I did do that. Mariya and I tucked in together and ate some food and joked about our exhausted angels. We watched Yentl, one of my favorite older movies. Meanwhile, Elena was completing a two day relay race with 12 other team embers from Blaine to Langley, on the far end of Whidbey. Steve, as usual, was Support Extraordinaire.

Family photoIMG954115

“Life astounds us in an instant” Mary Chapin Carpenter sings. It truly was just a small moment in time. One that had a lucky ending. By Steve’s birthday, the 22nd, just 3 days after the hospital and the accident, we had a picnic at Gasworks  Park and all of us ate heartily and enjoyed the Seattle skyline and the people watching and the glorious July sunshine. We had been astounded by two frightening events, and then astonished at the beauty of the world, celebrating Elena’s victorious race and Steve’s 67 years of adventures.

“Ordinary” (read extraordinary and magical—the same as yours) existence resumed.


The END of Hospital Chemo and the Old Ones


Round 3B, you did NOT almost kill me. Thank you. Part of it is that the doctor dialed down the dose a bit; and my gratitude for that favor, small in gesture, huge in effect, is boundless. Thus far, I have had no fevers, kept the nausea in check and generally have felt as good as I could expect to feel. What a relief to feel good enough to enjoy the height of summer. Bright flowers adorn the Maple Leaf yards, summer bees gather and distribute pollen, mornings and evenings are full of birdsong. That I can experience these things is a miracle I do not take for granted.

Now, if I can get through the next few dangerous days of Neutropenia  without infection, and my white blood cells return to protect me, I should be able to arrive at the transplant date (Aug. 20) in good shape.


Something happened the other night that I am still trying to make sense of: the death of tree. This has nothing to do with leukemia and everything to do with just trying to come to terms with how things happen. I take it as a good sign that my mind is working on this instead of just trying to survive.

Let me say this: I don’t take tree deaths easily, especially if they are big and/or old.  When the fine old leaning tree in front of the Office Supply store in Friday Harbor was abruptly taken down (sudden to me, and all who did not expect it), I was devastated. I had to change plans and go sit by Ben White’s grave for an hour before I could pull myself back together (for those who don’t know him, he was a nature activist who died far too early. But Ben would understand tree grief. Many people don’t.). I know trees have a natural life span and that rot can make them dangerous and kill them. I just take it hard.

IMG_7583It seems to me trees are so heroic, innocent and brave all at the same time. They root and grow, competing for sunshine and nutrients until one prevails. The Old Ones are full of sentience, with years of supporting other life forms, from raccoons to birds to moss and lichens and countless insects; providing shade and oxygen without demanding anything in return. Perhaps it’s their vulnerability that touches me so, that they are so big and stately and grand and they can’t run away when danger threatens.

We have certain tree-friends we especially love in a neighborhood that is old fashioned enough to allow and/or still have big trees. One of our favorites was a magnificent old weeping willow, one of my special tees. We went out of our way to sit on the little bench provided beneath this beauty and we felt rich and at peace. When I could barely walk around the block, this tree nurtured and fed my soul like a baby bird. On a still night, a week ago, the 70 year-old cracked from its heart rot and fell apart in a way that the grieving owners had no choice to take down the remaining section.  And there is no replacing it, except in another 70 years.


I am not sure why I have chosen to blog about this. There is just empty sky and a naked view of other houses where once a splendid life flourished. And because of shifting baselines, it is too easy to forget about it, and begin to take the tree-less view as “normal”. I can’t come up with a snappy philosophical turn-around about it.  I don’t even want to try, as it would be callous and disrespectful. I would rather grieve with neighbors I don’t know for a tree we loved for our own reasons.


I do think we are on this earth partly to witness. I want to notice and feel, pause and absorb the circle of life, even when it is hard. It puts my own aging and death into perspective. Life doesn’t last forever. Savor. Be an activist. Save. When you spot an Old One, lay your hand on it, and give gratitude and appreciation for its life energy.

“If the world were merely seductive, that would be easy; if the world were merely challenging, that would be no problem. But I wake up each morning torn between a desire to save the world and a desire to savor the world. This makes it very hard to plan the day.” — E. B. White


The Last Chemo Intensive

IMG_7555I think I will start with the non-medical story of how Steve hustled me out the door when I was still weak and getting sad in the dark cave on a bright sunny Monday last week. Determined to get us both out into the world, he asked me where I wanted to go and I said Rainier. He got a cabin arranged via friends, and Mariya and Will, who had just arrived in Washington, agreed to accompany us. I had never been to Paradise, nor had Mariya or Will. The drive up the mountain started to wake my slumbering senses; the hot day allowed us to drive with all windows open and the sound and scent of the cascading waterfalls, evergreens and ripening berries filled my heart.


By the time we got to the top, my energy was, to be fair, flagged out. Steve positioned the car with a perfect view of the Mountain and while the others romped in the snow, I rested in perfect communion with an elemental presence. Really for me, it was a gift not to move but to literally be LIKE the mountain and just face to face, witnessing the movement around us, the parking lot a half inch lake of water from melting snow, cars coming and going and enjoying the foreign accents of visitors in our national parks. The whistles of marmots mixed with ravensong and helicopters. Wafts of breezes came in through the windows, cool and pregnant with wet earth, snowmelt and emerging wildflowers like the breath of God. The Elemental is a healing place. Eternal, still, expansive. It was everything I needed.

IMG_7540After that, we drove to the cabin in Packwood and settled in. Again, because my energy can drop like a stone, I left the hustle bustle to others and stretched out on the porch recliner watch watching the light shift through the twirling leaves, the cottonwoods spilling their white tufts and all those amazing little gnats and other insects that seem to do nothing but swirl and drift and dance through the breeze. The stillness of my life right now is something I have rarely experienced. I do not multi-task in anyway, but just watch the world. I do this everywhere now, sitting n the car, at the cottage, out the hospital window. It helps me immensely to experience this quiet being at a time when my doing active body is so weak and changed. I can barely open a pill bottle but I can float my consciousness out into the world and witness it. There are so many things happening in the world hidden to humans only because we are all so busy all the time, we don’t notice. Now, that stillness is more common in my life than movement, I am rewarded by this other form of communion with the world. It is something I don’t intend to lose when I get better.


Anyway, determined Elena, who had to work, got off early and doggedly drove herself up in time for dinner. So suddenly we were a quiet woodland setting with the whole fam damily, including 2 dogs and it was, in a word, lovely.

IMG_7553The next day, we played and rested and the girls and Will went home. Steve and I spent another night and went up to Sunrise on the way home for another sheer treat of being above treeline with wildflowers literally springing up through the last of the snowmelt. I even felt good enough for a short walk in the sun. It shifted my awareness of my own health to be in the presence of such well-being and life. Just a little different than the SCCA routine.

And so, I carried that gifted energy into my last scheduled “Hyper-CVAD” chemotherapy (small frequent doses of highly potent chemo; CVAD is the acronym for the drugs used in Round A). “Herman” the IV pole holds only one bag at the moment, Cytarabine. When I have had 4 doses of Cyterabine and when I have been “rescued” (meaning the levels have dropped) from the Methotrexate, the 24 hour drip I had at the beginning, I can go home, hopefully on Tuesday. This hospital stay has been okay so far, busy. I have met with both the physical and occupational therapists to talk strategy about building strength back. All that weight I lost (now up to 117 lbs) was a lot of muscle mass. So, I need to build back strength in my arms and legs. The CMV counts prompted the visits of the Infectious Disease doctors. CMV is something many of us have but it lays latent in the body, suppressed by the immune system. But suppress that hard working system and suddenly CMV is on the prowl and growing in the body, and potentially wreaking havoc. So we are working hard to get the levels down.

And that dry little update is all anyone needs to hear about the hospital. It is that last scheduled chemo time before the induction chemo, which I believe can be done out- patient. It’s hard to believe I have been here for 6 rounds (7 counting the emergency visit where they tried so hard to figure out what kind of infection I had, which we think now was the CMV). By way of cheering me up, one nurse remarked “you’ve done most of the heavy lifting now.” It did not exactly cheer me, but there is comfort in knowing that some of the hardest parts of the trail are behind you. I hope.


Elena teaching Mariya how to do home hydration.

It’s the transplant now that looms up with so many unknowns. What we do know is that we have chosen the haploid or haplo route instead of cord blood. The reasons were subtle and there is not much research to go on which one is better. Mariya will most likely be the donor, unless for some reason, her health assessment uncovers something unexpected. Haploid donors—those that are not a perfect match but rather a half match, a couple of years ago caused horrific issues with graft versus host disease, but the recent studies out of Fred Hutchison Research Center have found a way around that (simple; more chemo). Anyway, now it seems, they can do the transplant all out-patient, whereas it used to require long isolated hospital stays. That is, unless, you run in “roadblocks”. And that list is long and scary. So we won’t go there.

What I do know is this, and I’ll just give it straight and dry, like I have been getting it:  The Induction process for both Mariya and me begins July 30. We will both be checked for health in every possible way. She will have to take the same shots in the stomach that I took to boost her own white blood cells for a few days. I will get to have induction chemo and tests of every part of my body, plus another bone marrow biopsy and many more spinal taps.

The transplant will likely be on August 20. For Mariya, that means a few days before she will have her stem cells harvested from her blood over couple of hours for 1-2 days. They will be replaced by her body over a short time. For me (and Steve), this begins the “100 days with a 30 minute leash to the hospital”. The month after will likely be hard, lots and lots of medications, visits to SCCA or hospital, and the potential for many unpleasant reactions. I will be very vulnerable to infection. Miraculously, this can be done out-patient—unless there are complications. That means the cottage instead of the hospital. Then, as Mariya’s immune system engrafts to me, and starts to work, I will slowly get better. I will have her immune system and her blood type. Maybe I will even be gluten-sensitive, like her.

With any luck, health will find its way back to me and hair will grow back and I will learn to eat again. My intent is to be back on island well enough to go for a walk and ready to enjoy Thanksgiving dinner.

IMG_7529I will be praying for the a successful transplant;  that it goes well, and that my body reacts well and engrafts quickly to Mariya’s stem cells. I will pray for no infections and no complications and quick healing. I invite you to pray with me. Until then, I just need to stay as strong as possible.

STeve’s Post: Saint or S.O.B.?

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 frienIMG_7463ds 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.