Image by califmom via Flickr
This past year handed us a fuckwad of undesirable stuff. We did our best to keep the hospitals, doctors, legal and pharmaceutical industries hopping. I cursed God (when we were speaking). I prayed. I sat in silence. I sat in tears. I curled up in the fetal position on the shower floor. We nearly lost some of our loved ones. We did lose others. We lost my husband’s brother-in-law on the final day of 2009. Many things about 2009 were just plain wrong. Unexplainable.
But like life, this past year had a flipside. We loved. We were loved--sometimes by perfect strangers, people we’d never met extended their kindness and generosity our way. We laughed, inappropriately, uproariously, during chemo. I laughed with my friends—my girlfriends, my husband, my children, my blogging friends in Chicago, my online friends in the comfort on my pjs. I listened to the laughter of my children as they discovered Ferris Bueller’s Day Off for the first time—those belly laughs that melt a mother’s heart. We felt the love and caring of friends and family who cared for us and continue to care for us in more ways than we can enumerate.
Without the pain of 2009, I would not have experienced all of its humanity.
As we move through 2010, we will again test the duality of the universe. In the next 3-4 weeks, Bob’s blood with be tested against that of his five siblings to see if any of them are a match to be a donor for an allogeneic stem cell transplant. The doctors at Stanford and Kaiser feel that given how aggressive his cancer has become, this is type of transplant has the best chance of success. In an allogeneic transplant, the donor’s cells help to attack the cancer—sort of the reverse of an organ transplant where the recipient’s body tries to reject the organ, in a marrow/stem cell transplant the marrow/stem cells of the donor attack the recipient. (Layman’s explanation, there.)
There’s a 1 in 4 chance a sibling will be a match. In the event that none of his siblings are a match, Bob will undergo an autologous stem cell transplant (where they use his own stem cells) to buy time while they look for an unrelated donor. Once a donor is located, a mini-allogeneic transplant will be done. (In case you’re wondering, as we did, only siblings are screened. Children, parents, other relatives, are not screened as they don’t share enough DNA, which makes them, at best, only a 50% match and the donor registry would produce a donor with a higher % match.)
Logistically, this means that Bob and I will be moving to the Palo Alto area for the next 3-4 months as Stanford requires us to be within a predefined Safe Zone distance from the hospital during the transplant process and our city, while in the Bay Area, is outside the Safe Zone. The kids will stay behind with family coming to take care of them. Thank God for grandparents. Although, I’m not sure what they did in their past lives that they had to live through my angsty teen years and now have to endure them again with my children. Do say some prayers for the grandparents. Or send booze.
Bob will be an inpatient for a number of weeks, but once he’s an outpatient, I’ll be his Nurse Ratched, responsible for preparing his low-microbial diet (he’ll have no immune system), administering his outpatient meds, being his gatekeeper, and a big list of other shit that’s in the 3-ring binder we got from Stanford that Bob’s required to read but refuses to read because I asked him to. That’s how he rolls. From what I can tell so far, his diet’s going to be even more limited than the neutropenic one, I’ll be boiling a lot of water for him to drink, and we’re going to need an apartment with good cooking facilities because we won’t be eating anywhere but in for a LOOOOOONG time.
And hey, if you’d like to help: register to be a donor. You might save my husband’s life. All it takes is a swab of your mouth. They mail you a kit. Super easy. And donating is easy, too. They don’t drill you in the bone like the old days, it’s done with an IV in your arm now. Out one arm, back in the other. If you don’t save Bob, maybe you can save someone equally awesome. Or a total asshole. How the hell do I know? I don’t think they screen for that. Stick a post-it in your kit. Tell them "no assholes, please."