Marty's Myeloma Odyssey
I'm Marty and I need some help. Here's my story.
I recently got a terminal diagnosis, along with renal failure caused by my rare form of cancer: IDG Lamba Lightchain multiple myeloma. Sounds like something Deepak Chopra would recommend to raise your consciousness or some such, but no, it's an actual cancer that lives in your bone marrow and wreaks havoc from there.
At first I was devastated, but once the existential grief wore off, I looked around and realized the silver lining - that I am an incredibly lucky person. Lucky in that I have the support of a loving family and family of friends who are often beautifully indistinguishable. And lucky in that I have the love and support of Debbie, the love of my life and my now wife (we were married in May 2016). Also, living in Sonoma county, I'm surrounded by such beauty at every turn that everything, taken together has inspired me to take a "carpe diem" attitude and to just try to enjoy each day and each cup of coffee to its fullest, because really isn't that what we all should be doing anyway?
But, despite my positive attitude, the reality is that the treatments, prescriptions, appointments, and the procedures are bankrupting us. I am a web designer/developer, but I can't work very much these days and Deb has had to cut her hours way back in order to help take care of me. We have plowed through our meager savings and have few ways to generate any income at all. We hate to be in this position and we hate to ask, but we do need help. We just want to be able to take care of ourselves and our four children (we're a blended family) without incurring (more) crushing debt.
We are asking for money to help us pay the bills, medical expenses, and to keep up with the daily demands of our new reality. We need to raise cash as soon as possible - the credit cards are maxed out, the bank accounts are spent down and we would be forever thankful for whatever help you can provide.
Thanks for taking the time to read about me and my family and may you and yours have a very Merry New Year!
It’s been a while since I’ve posted anything, partially because I’ve just been busy healing and partially because of my philosophical distaste for Facebook. If you’re interested and want to read what I believe is the definitive analysis of Facebook, it’s “You’re the Product”: https://www.lrb.co.uk/v39/n16/john-lanchester/you-are-the-product
If you read that and come away anything less than horrified, then I really don’t what to tell you.
Forgive the tangent, but despite Facebook’s inherently malevolent business model, it is still the only way to cast the widest net. Certainly if there was some other way to achieve optimum networking for this sort of thing, I’d do it, but as of now, there isn’t so here I am.
Okay, with that out of the way, the crux of this missive is to update you all on my health and to offer my deepest, most grateful thanks for all of your astounding love and generosity.
My GoFundMe campaign was a success, both financially and psychologically. And despite my illness and all of the crappiness that entails, I feel so lucky to have such a marvelous family and extended family and community of friends supporting me. I also have good news in that my bone marrow transplant (not as bad an experience as you might imagine) was a success and my cancer has now been in remission since December 2016. I even grew back all my hair!
Now, the cancer is not gone, but it is dramatically suppressed and evidently my kidneys have recovered enough to the point that I am only in dialysis twice a week, which in the scheme of things isn’t so terrible. I am also on a daily maintenance, low dose of a chemo drug called Revlamid just to make sure that the cancer is kept at bay for as long as possible. It was also a requirement for the wonderful folks at UCSF’s kidney transplant department in order to ensure that I was a candidate for a kidney transplant, so I’m also happy to announce that I’ve been given the green light and approved for a kidney transplant.
So, as it turns out rather than waiting up to ten years to receive a compatible cadaver organ, it’s always better and quicker to try to find a live donor. Live donor organs also always work better and last longer. So, my new challenge is to find someone who’s willing to donate one kidney, since it’s perfectly fine to live quite normally with just one fully functional kidney. I’ve had some folks express interest, but again I figure it can’t hurt to cast that wide net, so if anyone’s interested here is UCSF’s donor information website: https://www.ucsfhealth.org/treatments/living_kidney_donor_transplant/
The cool thing is that donating helps me, but it also potentially helps two people because a potential donor doesn’t even need to be a match for my antibodies, rather live donors are tested for compatibility and then entered into an exchange system wherein they are matched with someone who needs a kidney and whose antibodies are a match. Meaning that if a donor is not a match for me, they’ll be a match for someone and since I’ll have someone donating in my name, I’ll then be matched with someone. Here’s the link explaining that in more detail: https://www.ucsfhealth.org/programs/kidney_donor_exchange_program/
Anyhow, if I’ve learned anything from this whole experience it’s that the cliché is true. Life is short. Control is a delusion and enjoying everything and everyone you love and cherish is really the only thing that matters. I want to try to do that for however much longer I have and recieving a donated kidney would drastically improve my quality and length of life, so of course I want to pursue that as I think anyone would in my situation.
So, please do spread the word and help me find a kidney and know that in even just talking to others about it, you’re helping me and potentially someone else out there who is in equal need.
Thank you all and here’s hoping that 2018 brings with it much health and happiness!
I'm not sure I'll ever find the words to adequately thank all of you enough... but I do know I can't say it enough!
Thank you all so very, very much! I wish I could see all of you simultaneously and sport a gigantic round of beer!
Wow, Martie, you look fantastic! Thanks for the update on your health. I'm happy to hear you are on the mend and on the list for a kidney. I hope 2018 is a wonderful year for you and your family. Gayle Petersen
Marty-- It has been a while. How are you doing? Well I hope. Colman Kahn