I remember a few years ago (more than 3, fewer than 5) Lance Armstrong rang to give me a fist bump as I launched myself into the world of clinical trials. We talked about all the options that were out there at the time, but I said, “No more chemo.” He said, “Unless you need it to stay alive, right?” My mouth said, “Yes,” but my brain said, “No way, dude.” That’s pretty much been my mantra for the last, I’d say 18 years since the Adriamycin/Cytoxan combination for breast cancer sent me to the hospital on a regular basis. I cracked some when the Thymic Cancer arrived by adding low dose chemo to the radiation sessions. And technically, camptothecin, which was part of my last clinical trial, is a chemotherapy. I suppose TECHNICALLY, it’s all chemotherapy, but you know the kind I have been pushing away with both feet for so long.
That’s why no one was more surprised than I was when I decided over the weekend that chemo, standard chemo, is the next route I want to take instead of the MRNA interlesional trial. My last freefall from lack of cancer treatment (since June 4) has convinced me that I need to go with the surest therapy, and that is the combination of Gemzar and Xeloda (Gemcitabine/capecitabine). Even richer in this turn of events is that I’ve been pushing to start the first cycle two days ago and yesterday and today and tomorrow. I can’t start it soon enough. That probably answers your next question, but I can elaborate: Hammered shit, to quote a much beloved former news director, Steve Ramsay. That’s what I feel like… sometimes more hammered, sometimes shittier, but up here at 7,000 feet in Park City, I don’t get respite at all. Some part of my torso, ribs, core, back, shoulders, or the tumor I can see hurts all the time. I’m taking more Tramadol, more ibuprofen, and I seriously can’t sleep without a few milligrams of THC.
I was watching some of the Ironman 70.3 World Championship last weekend and remembered that I’ve done that race twice. I’m in awe of that athlete. Now, as I told a doctor friend this morning, the extent of my “training” is walking, and I don’t always do that well. And did you know that taking a hot shower is incredibly taxing? A PT at Huntsman told me it can be one of the most intense activities of the day because of the humidity and heat and movement. Sadly, it is for me. I have to choose if and when I’m going to take an extra few seconds to shave before I burst out of the shower gasping for my supplemental oxygen. Today, the legs are hairy, but my feet are smoother. Trade offs.
I’m scheduled to start the GemCap on Wednesday (or Tuesday if my oncology nurse, Kelly, works her usual magic). Supposedly this treatment won’t make me too sick to fly back to Maryland on Thursday. Supposedly, my hair won’t fall out, but I’m still going to try the Cold Cap. It basically freezes your follicles and scalp so no drugs get all up in there. It’s expensive, but seeing as hair loss is high on my list of Reasons to Dread Chemo, it could be worth it. It’s worked for people I’ve talked to, but it’s supposed to be super uncomfortable. Of course it is. I’m starting the chemo at Huntsman in Salt Lake, but when it gets cold outside here, I’m going to transfer to Georgetown/Lombardi Cancer Center and continue treatment there. One of Dr Rajan’s former fellows is an oncologist there; I remember him from the NIH and like him already. My target is Thanksgiving to move to sea level Maryland for the winter, but it snowed here on the mountains the last couple of days. I may not be able to hold out that long. I may have to seek sea level and less indoor heating before then. Linus and Lucy are coming with me, which will require a blog post of its own.
I’ve been trying to mitigate the effects of my high elevation home by going to lower elevation for a few days at a time. Two weekends ago, I took Linus and Lucy to Hotel Monaco, the Kimpton property in Salt Lake. They allow pets and in fact had cat beds and food bowls out in the room when we arrived. I just watched indie movies at the Broadway and ate and hung out with my cat posse. 4800 feet was pretty good. It was pretty fun, anyway.The cats were into it.
Then last weekend, we went down to Lake Las Vegas, which is closer to 1400 feet, and that made a difference. I was able to get off the oxygen to sleep and even to walk around which hasn’t happened in a while. We met up with my Livestrong friends, Will and Serena, and saw two Cirque du Soleil shows, Michael Jackson One (conflicted about this one) and the Beatles Love for the third time for me.
It was a great few days, even though I canceled the end of my trip, the part where I was going to meet my niece and sister-in-law in Springdale for some Southern Utah beauty. Like I said, I was trying to push my chemo up to two days ago, yesterday, today and hoped that would happen (it didn’t, obviously). These little getaways make me feel better, but coming home to Park City is almost always a punch in the face. I lose a lot of ground as far as doing everyday activities. And there’s no clawing my way back up. That would make my oxygen level drop. (Cancer joke. You can laugh.)
I’ve also canceled a trip to Israel and Jordan with the Admiral and Pally and my niece, Katy, which about killed me. But I didn’t want to be thousands of miles away if the chemo combo isn’t well-tolerated for me. I also didn’t want to bail right before the trip. And I had to back out of a speech I was going to give a large group of hospital administrators in Virginia, which is distressing to me. I was going to give them the patient perspective on treatment, mindset, survival, and more, but I couldn’t see myself as being even a little effective or having enough endurance for the event. I was planning to do a yoga retreat in India because I feel like India is calling to me, but I’m bailing on that, too. That one is heartbreaking. If my lesson in this life chapter is forcing myself to say no, I am getting good, though disappointing, practice. The Admiral, because we’re all just living in his world, says he’s keeping me as part of HIS trip to India in February. No one holds on to hope better than him.
As vehemently as I’ve refused standard chemo for the past five years, I am not conflicted about what’s coming next week at all. I accept that it’s my most promising option right now, a position that was further validated by Dr Sameek Roychowdhury at the James Cancer Center this morning. He, too, says the combo is well-tolerated. (I’ll be the judge of that, but I hope these doctors are right!) I’m actually counting the days (6 or 5… Come on, Kelly!) til I can get back on a cancer-fighting regimen. It’s been a long summer without. Who would have thought this would be me? Well, Lance, I suppose. The king of Fight Like Hell. #defy #livefearlessly
Love. You. Woman.
Thanks for sharing more of your life journey with us as it’s important to share what others may also be going through on their journey fighting cancer.
Continuing prayers and thoughts of healing for you. Hugs and Love!
You are always in my prayers; warrior woman❤️
Matt J. McDonald
Going over my shore excursions with my wife on our upcoming trip to Italy. I told her don’t expect me to go dancing the night after we spend 11 hours touring Barcelona. Then I watched your interview with Marc…..
Don’t worry, I’ve already hit myself over the head for that bonehead statement. You’re right, life is short especially when you get older…I mean bolder. I’ve had some health issues but you continue to inspire me quit whining. When I got out of the hospital and was home on the mend, I watched the movie Shawshank Redemption for the umpteenth time. My favorite line is “Get Busy Living or Get Busy Dying.”
Thanks for the interview with Marc, Thanks for your blog and Thanks for reminding me what’s important.
GO GIRL…YOU ARE IN THE RIGHT PATH…MY FRIENDS ARE PRAYING FOR YOU TOO…TUOU ARE GOING TO KICK IT…DEFY…DEFY…DEFY…BLESSINGS…BLESSINGS…BLESSINGS…
You are truly an inspiration. Prayers to you. Thank you for sharing.
India is calling and soon you will feel much need peace. Saying no is temporary Getting your health back is permanent. You felt the tug, you’ve got the answer. Can’t wait to hear about your trip to India. I know it will happen. I am on an unknown journey with very progressive MS so I am grateful for those big breaths and extra steps in a day. Anytime I am about to give up on treatment .. I think of #defy…you give me inspiration. praying everyday for you my friend Kelly
Sorry to hear about the chemo but it has definitely improved in 18 years! At least the anti-emetics have improved. I did the cold cap therapy and although it is a pain in the ass it is not painful., and I think that has also improved
In the 10 years since I did it! I was the first to do it at Florida hospital and now they have it as a regular adjunct for
Chemo there. As I recall you rocked the bald head with a yellow Mohawk at Headdress ball. Let me know if you need anything at all. Sending you healing vibes and good wishes for your chemo. I’m sure it will be better tolerated this time.
You are one amazing human!! Always in our thoughts with love and admiration!
Wendy so sorry for this horrible news. You were my support when I was going thru my chemo back on 1995. Unknowingly on your part I’m sure, you gave me so much strength and miraculously, I too survived those incredulous treatments they gave me for
several months. I’ll be praying for you and I hope for a better outcome of all the treatments you’re currently receiving.