My Rhabdomyosarcoma At One Year

(It's been a long time since there have been any posts here.  Not because nothing was happening, obviously.  But C has wanted to let you know where he is and has been, in his own words, and today being the one-year anniversary of his diagnosis seemed like a good time to do that.  So without further delay...)


hello everybody! one year ago today, i was diagnosed with this crazy cancer. and about eleven months ago i started 14 three-week courses of gnarly chemotherapy, along with 30 radiation treatments over six weeks.

a long and brutal ride - definitely the most difficult thing i've ever gone through. once we emerged from the unbelievably harrowing diagnostic phase, we settled in to what was certain to be a pure sufferfest - had to just kind of lean into it, take the rope-a-dope, deal with it one day at a time. i remember saying "it's not that bad if i just don't move..."

Photo by Vic Huber

but as of a few weeks ago i'm done with the chemo, and i recently received the results of a series of post-chemo tests and i am, dare i say it, cancer free. i can barely believe it. of course my cancer could totally come back - i almost feel like my oncologist expects it to - and i will definitely be sweating test results every three months for years to come - but i feel like if it does recur, it's something new to deal with. the cancer i had is gone. negative is the new positive, for sure.

now i take stock of my physical situation after all this fantastic "therapy" - i've lost thirty+ pounds and my hair and it kind of hurts to smile - call it chemo chic. my fingers and toes are numb. feels like i've been drinking bleach for a year. i think i've thrown up a thousand times - all over the hospital, in my own lap while in the fast lane, at jim and clare's house, joni's house, kevin and germaine's house, at the gas station, restaurants, the grocery store, at&t park, yosemite, laguna beach, skywalker ranch... and the radiation basically cooked my face - i'm so congested that i can't hear very well, or breathe easily through my poor embattled nose.

but now i'm eating like a horse, i've burned my bedding and ceremonially tossed that tupperware barf bucket - literally pulling open the shades to reveal a whole new landscape. so i'll continue to pursue various dreams and remedies, bitch to my therapist, get outside, and eagerly watch to see if my eyebrows grow back. plus, next week they will remove the hated catheter from my chest. psyched.

Photo by Kevin Horner

i have a lot of people to thank - you know who you are. all the people who kept me in their thoughts and prayers and sent such nice notes and advice and thoughtful gifts, as well as everybody who carried the dogtags. i absolutely believe that everybody's positive energy helped me. and special thanks to The Team, my family and friends, without whose support i truly wouldn't have made it to this point - brother jim and clare who were by my side at the worst of times and filtered a thousand pieces of data for me; and karen, chandler, david and lizanne who did a ton of research and came here to help navigate the new normal. and my mom, who just sat with me while i slept. and all the doctors and scientists and nurses at City of Hope... i could go on of course, but hopefully i'll see you all sometime soonish so i can tell you in person...

the tumor is no longer cancer and i move forward, thanks to smart people, thanks to caring people, thanks to you.

c.