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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Porten Sr.

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