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).
Steve and Shann, again we thank you for sharing your progress and thoughts with us. We hear your wariness and the yearning for normalcy to return. So wonderful that you could come to the island if even against dr’s orders. Sometimes you just have to break the rules. Take care, we think of you both with great affection.
Hi Steve, I greatly admired your latest account of what’s been happening. You said so much, and so well. That’s wonderful to read that things are progressing well – not sduenough sthat Elena and Mariya can resume their lives, and that you could go home. It was disconcerting to read there are still opotential pitfalls out hethere. You so beautifulloy descsribed what this ordeal has done to you.
So glad you had the energy to write to us! We trust there’ll be another ‘infusion’ of energy for both of you in enjoying Elena & Mariya’s fresh adventures & endeavors. Love, Suli & Thom
Thank you for your beautifully written, informative update. I’m very sorry to hear about the setbacks. Shann has to fight very hard. I’m glad she has the support of a good family. I’ll be overjoyed to hear that she is again going forward toward a full recovery.
If Elena comes back to the US for a job after completing her training in Peru, she might find good job opportunities in the Capital District area of New York State. A recent edition of the Times Union has a front page story “Accessing literacy without English” indicating that in coming years students may take a Spanish Language Arts Exam because “New York like a handful of other states is considering asking the federal government to let it offer an alternative exam for students who are new arrivals to the United States and may not speak English, much less read or write it.” The web address is: (www.timesunion,com ). The article is on the front page, above the fold (Tuesday, October 22, 2013).
Thanks again for sharing your thoughts and feelings regarding Shann’s life-threatening illness and I wish you all the best of luck.