Light the night

All things considered, I'm pretty fortunate. Sure, one could complain about illness and the lousy luck early on, but I've caught some breaks in the last couple of months. Some folks have it far worse than I do, and without the kind of support I've had. 

The Light the Night walk is an effort to raise awareness of blood cancers and to raise funds for research and local support programs.  It also serves to remind people suffering from blood cancers that there is support for them out there. There are fundraising walks happening across Canada in September and October, and here in Ottawa October 18th. I'll do my best to participate if I'm not in the hospital.

My big sister is taking part in Winnipeg on September 27, a sweetheart thing to do. As a nurse who's seen and done all kinds of things, Trish has been a big help in guiding me through an often impersonal and indifferent health care system. Early on in this process, she made me kick down some doors, getting me into the system faster than the system wanted me to. And in hindsight, I'm lucky she did. Thanks sis.

I just had my fifth dose of the Brentuximab, and it's still working, and still the most awesome drug I've ever taken (well, maybe not quite as awesome as the hydromorphone injections or the steroid that let me eat six meals a day). The side effects are building, but again, it's pretty mild stuff given the alternative. The neuropathy (kind of a tingly numbness) in my fingers and toes is still increasing, and my joints are like the tin man's -- sore when I get off the couch, but fine once they get oiled up. My blood pressure, on the other hand, keeps getting better and better (so it probably had nothing to do with the Brentuximab and more to do with the kids acting like lunatics), and my blood counts - hemoglobin, platelets, white blood cells, etc -- are still in the normal range. I think this was the last treatment (though I've said that before). And no, I'm not getting paid by Seattle Genetics to push their magnificent products, but I'm including this stuff in case anyone in my position is searching for details and experiences about the drug. 

It appears that Montrealer Mai Duong finally found a match for her stem cell transplant. Great news, and a positive outcome in her hard fought and important awareness-raising campaign. Check out the latest on her here. She includes some interesting information on donations and registries around the world. Just another example of how these stem cell and cord blood donations can literally be life-saving.

At my end, we recently met with my transplant team to get an update, and it was a bit of a mixed bag with some harsh realities settling in. More on that later, but at least it was great to hear this will in all likelihood proceed sometime in late October or early November. Out of the approximately 22 million folks on the registry, my one best match has apparently agreed and already sent in blood for additional testing. As long as he/she doesn't get cold feet, this is a go. Whoever you are, wherever you are, thank you. I wish I knew who you were and could thank you directly.