Weird Days All Around

Weird days all around, between my own medical challenges and the world’s, i.e. Covid-19 pandemic. Plus even weirder through the sleepless lens of the massive steroids I am now on. But I promised another annoyingly optimistic post so I have to deliver. 

No doubt a diagnosis of leptomeningeal disease is dire. But the optimistic news you won’t find on the internet yet is that Memorial Sloan Kettering Cancer Center just completed a clinical trial for a modification of standard proton therapy that was so successful they are now using the modified therapy and rushing to publish the results of the trial. That is the therapy I’m starting next week. But I am getting ahead of myself. 

Last week was my most recent Sloan ultimate experience. This is where, when you are just about to despair, Sloan doctors, nurses and staff swoop in and fix it. I can’t say it enough: in my over 6 years as a Sloan patient I still don’t know how they do it. 


Within one week of the spine MRI revealing this new complication, I’d gotten additional scans; met with my medical oncologist, my neurologic oncologist, and my radiation oncologist; had other related issues explained, like what additional scans I’ll need for other decisions such as whether my systemic meds will change; I have a clear plan for treatment. A single call to one of my three amazing nurses ended up expediting my simulation appointment for proton therapy, moving it up a week and a half.

That simulation yesterday was a piece of cake. Unfortunately I’d spent a good deal of anxiety currency on it, which wasn’t needed. Honestly it was like I imagine a spa treatment would be (never been). While I listened to James Taylor and Jessie Colin Young, a nice woman pressed a piece of flexible wet mesh that will harden into a mask against my face (like a massage through a warm towel), while two others marked my body with felt pens and tattoos in what my brain interpreted as a sort of reiki-inspired shamanistic ritual. I’ll have 10 treatments over 2 weeks, targeting my spinal fluid and everywhere it travels through my spinal column and brain. The side effects will include fatigue, skin irritation, hair loss*, swallowing problems maybe, and possible longer term minor cognitive impacts to short term memory. But I’ll be symptom free and alive for at least a while longer. And I don’t even have to worry about traffic to and from treatment because I timed this perfectly to coincide with a pandemic! How’s that for looking on the bright side!

I did have a very disturbing bump in the road yesterday while at my appointment. There were two times when I was unable to walk and nearly fell down. They tried to get me into a wheelchair but I refused. Honestly it freaked me out completely to even think of sitting in that chair: Wait, so now I’ve lost the ability to walk!? I cried, it passed, and I was fine. In hindsight I think it was not a progression of symptoms so much as the fact that I attempted to continue walking through one of my attacks whereas I usually just stop and hold onto something and ride it out. But, note to self, it was a wake up call that I better work on resiliency planning to better be able to deal with what may be in my future. Sorry, I know that wasn’t very optimist thing to say!

So to say I am Sloan’s biggest cheerleader is an understatement. When my first medical oncologist Dr. Latif left, I feared the worst. Then I got Dr. Ligresti, who was awesome. When she stopped seeing patients at the office I go to, I got Dr. Rizk. The biggest complaint I had against her was that she wasn’t Dr. Ligresti, which I admit wasn’t fair. I’d only actually seen her once before this new turn of events. Turns out she is also amazing, and has experience with and has done research on this condition. Then there is my neurologic oncologist Dr. Gavrilovic who monitored an unrelated brain meningioma with me for a few years. He was as perplexed as everyone when I returned to consult him about my recent symptoms. He is kind and smart, and the best advocate for prioritizing treatment for me, his patient with a year’s-worth of weird neurologic symptoms just discovered to be related to a condition with a prognosis measured in months. Although I wish Dr. Schupak were still my radiation oncologist, I now have a team lead by Dr Yamada whom I have yet to meet, overseeing experts in proton beam radiation, backed of course by the math PhDs who are creating my treatment plan as I write this.

Last night Fletcher and I were talking about how amazing medical diagnosis and treatment is. That physicists and engineers and bioscientists and surgeons can use surgery, chemicals, and radiation to cure people. I struggled yesterday during simulation to not “go there,” that is, back to the state of mind I clearly recall during my prior radiation sessions where it was all I could do to not cry through the sessions for being so thankful smart people were working to save my life (see September 5, 2014). Hurray hard science! 

Our conversation wandered into the territory of less-hard science, such as natural medicines and other things less well-documented and less “hard” cures. Then on, of course, to the nebulous mind-body connection realm and how hard it will be to prove that we are capable to making our own bodies inhospitable places for disease to take hold. And also to get to the point where such things are routinely part of treatment, considering there’s no money to be made. But over my years as a cancer patient I’ve seen some slight changes. Sloan now has integrative medicine. All my docs are fine with acupuncture, massive mushroom and green tea concentrate supplementation without even a sideways look (after treatment to avoid interference). So that’s a start. And maybe all that clean living and meditation I’ve been up to recently is playing a role exactly right now at this very minute.

That’s enough optimistic rambling for today. I am now compelled to go eat something by the same steroids that will make whatever I eat taste bad. I declare that due to steroids, for the next few weeks, I will not be optimistic about sleeping or eating! (except ice cream, which somehow defies steroids’ evil way of making everything taste like oil.)

* Reminder & weird fact: This is not my first head-shaving rodeo. The day I first shaved my head to take control of chemo-related hair loss was April 6, 2014. I expect to have to do the same for radiation-related hair loss on about April 4, 2020, almost exactly 6 years later. I’ll have to plan a trip to the beach that day to once again memorialize the event (see April 9, 2014). 

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