Starting this blog with Lyrics from one of my favorite Nine Inch Nails songs. Ah you’re surprised I can even name a NIN song, but actually, I can sing whole albums. I’ve seen them twice, once from the second row of a mosh pit (try keeping that a secret, being Wendy Chioji and all), and the next night in a big arena. But I digress. The line before “Now, I’m down in it” is “I was up above it.” That’s a pretty good summation for me, anyway, to say that I’ve been able to avoid standard of care, standard chemotherapy for five years, instead going from clinical trial to clinical trial of targeted drugs, immunotherapy, and a couple of off-labels. But because it offers me a 30-40% chance or higher of responding and actually feeling human again in this lifetime, I started Gemzar and Xeloda Wednesday, September 18. It is used primarily to treat patients with advance pancreatic cancer, but really smart people who specialize in rare diseases found that it also is highly effective for Thymic Carcinoma folks. Thank God for that and for them.
“I was up above it, now I’m down in it” is also a pretty good descriptor of that happened to me between September 17 and now. This chemo combo is Gemcitabine (Gemzar) as an infusion of days 1 and 8, and capecitibine (Xeloda) as a pill, 2000 milligrams for 14 days, with week three as our Drug Holiday (there will be partying. Or at least staying up until 9). Gemzar is gentle as far as chemos go. It could have made me nauseated, fatigued (hold on to this one), felt flu-like symptoms, and affected some blood counts. The Xeloda can give you nausea, vomiting, insomnia, and fatigue (hold this one, too). I’ve been only barely nauseated, but I have forgotten how to sleep. I take Tramadol and THC gummies which help me fall asleep. For an hour. Then, I’m up all night long. Wide awake usually. Saturday, I think I saw most of the minutes turn until the sun came up. I haven’t seen the sun come up since college, and that was way more fun (and the drugs were probably better, too). (I’m kidding, or am I not kidding?). That means I am dragging myself through the days, barely keeping my head from hitting the table at lunch whether or not I have a lunch partner.
I also was adamant adamant adamant that I did not ever want to lose my hair again. I ordered the Penguin Cold Cap System, which cools your scalp to about -25 degrees before, during and for four hours after infusions. The science being that drugs won’t get to the follicles and damage them. Tiff, Patrick and I worked through the somewhat complicated instructions and got through the first frigid 20 minute rounds of cap changing. But I was feeling lightheaded and somewhat nauseated, and dizzy. Not good. Right at that moment, an infusion nurse walked by and said,”Don’t torture yourself. Your chemo combination doesn’t make y0ur hair fall out. I’ve never seen it happen.” And that was enough for me. I told Tiff and Patrick that I was just thinking there’s no way I can tolerate this countless more times. I know that thousands of women use these systems successfully, but I don’t think they’ve been kicked to the ground quite as many times as I have before they show up in infusion. I could be wrong, I could just be being soft, like I still am when my friend, Andrea, talks about her beloved Bikram Yoga classes. All I know is, we’re moving forward relentlessly with no cold caps and I’m hoping that cute nurse is right.
So far, not a hair has leapt to its death from my head. But it’s only been 8 days. 16 has been the key day for me and my traitorous hair in the past.
I made my planned flight to Maryland, though I’ve canceled everything else. While in Maryland, I didn’t go to my reunion pre-party. I didn’t go to my reunion. I didn’t go visit some family I haven’t seen in a long time. I didn’t go see the Redskins play in Monday Night Football (maybe that wasn’t a bad thing.. Although it’s always fun in the box). I mostly laid around and ate very small amounts of leftovers (I have no appetite. ME!!!), tried and failed to sleep for more than 30 minutes at a time, and had that chemo lethargy where you are too tired to lift your arm to turn off an alarm. I did, however, make meetings with Dr Rajan at the NIH and my soon-to-be-new Dr Kim at Georgetown/Lombardi. Both are so… “optimistic” isn’t the word. It could be that they’re so “convinced” that this drug combo is going to work that Dr Rajan couldn’t keep himself from asking me if I had noticed any differences yet. If it’s not my imagination, I have. The bone mets on my ribs SEEM smaller. And I can draw full breaths on a regular basis now. It used to be a weekly feat. Dr Kim is great. I do know him. He was Dr G’s Fellow at Georgetown, and also worked with Dr Rajan at the NIH. I met him when I did the Sutent trial, and when I did Keytruda and made milcicliv maleate at Lombardi. I feel like he’s doctor destiny for me. I’m totally comfortable with him being my oncologist for as much of the winter as I spend in Maryland and for whatever else lies ahead for me on the East Coast.
In Maryland this time, though, sea level didn’t seem to help me much. I was disappointed until I remembered that I hadn’t factored in, oh, two new chemotherapy drugs. The trick will be how I feel at higher elevation in a few days. In my down time that I gifted to myself through canceling commitments, the computer was too heavy and too much of a burden to get (from next to the bed), so I surfed social media on the phone, and am writing the blog 3 days after the trip, back home in Park City. I didn’t think being in Maryland at sea level was that great until I came home to Park City. Holy Cow. The shortness of breath is incredible. I’m fighting off panic attacks again. And here, I can’t sleep either. It’s my answer for this winter. I’ll be spending at least a coupla three months with Al and Sheryl and Chris. They’re good with me bringing Linus and Lucy, so we’ll all head out sometime before Thanksgiving, all dependent on my suffer factor and when Dr Kim can get me into the infusion room.
I believe I have passed the nadir of these weeks of wretchedness.
I believe that these drugs are going to work for me, hopefully sooner rather than later.
I am grateful to be able to choose where to get my care, and I know that most people can’t do this.
I am grateful that I wasn’t the only one who got angry and went into a higher gear when it was suggested that hospice is a reasonable option (and again, I believe that it is for people. Just not me, not now).
I am grateful for how my friends and family are standing right over my shoulder so I don’t have to ask for big things, like trying to make that dang cold cap fit, and getting food delivered for the many days that all I can do is nothing. Or small things, like sending notes and pictures and putting their favorite photos with me on my Facebook page. Mike, it did turn out to be my favorite thread of all time.
I am grateful I have lived well on my borrowed time for five years this Labor Day.
I am hopeful I’ll borrow five more.