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.
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.
Hi Steve, this one is for you. I Loved seeing you in the store the other day. It was a gift to be able to give you that hug and a kiss on your furry cheek. My prayers include you, Shann and your family. I’m all in for ya.
Steve, thanks so much for the update. I was thinking of both of you today while digging out Patty Peirsols deck so was delighted to find your post on my return home. I too am a donor, and will go the marrow site to see if I can give there too. You two know we are all thinking of you and pulling for you (South African expression). Love you both, Joy in Fairbanks and Susan in Paris
I love this picture! it looks like shanns arms are around everyone!! love you sooooo much!!!! the kate brood!!!
Hi Steve, I’m grateful for your post. I was also impacted by the repeated inquiries around my chances of survival when I went through the cancer journey. A chaplain I used to work with shared a Norman Cousins quote, which keeping with your betting metaphor, was a “game changer” 🙂 “My chances are 100%: 100% chance that I’ll live, and 100% chance that I’ll die.” Love to you, Shann and all the family, Ruth
Steve, Thanks for the update and the clear thinking. I remember talking with Shann about her ancestry in one of our first conversations (that would have been in about 1991?) I think I remember Mexican and Scotch. Is that right? I’d like to put out a request for the right genetic mix on Facebook (though I know we should all be donors, but not all of us need a donor RIGHT NOW). So could you post the genetic mix that we’re looking for? We could at least expand the pool and maybe find the perfect match. I hope, I hope, I hope….Thanks, Marnie Allbritten
Thanks for sharing how you’re feeling and what this ordeal is like for you and your family, Steve. It is such huge stress – you have my total respect and love for the way you are handling it. My heart goes out to you. Love, M
Thank you for writing; both of you. I’m sending hope and prayers and love. I hope and believe your words will inspire many who care deeply about you, to become donors.