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Amazing Progress in the Past Month

by Maggie Jones
3 comments

I was pretty nervous about our whirlwind trip through the US. Seattle, Albuquerque, Austin, Minnesota, Baltimore, New York, and Austin again was a pretty punishing schedule given how I was feeling when we departed mid-January. I was also concerned about so much air travel in the middle of winter given my low white blood cell count and slightly damaged liver.

I’m thrilled to report that not only did I avoid getting sick (I credit all my immune boosting supplements), my symptoms seemed to improve over the course of our travels to the point where I’m feeling… dare I say it… almost normal.

My primary complaint through January and early February was periodic “spells” of dizziness, nausea, and blackening vision accompanied by a “sickening” feeling that only went away after I sat and rested. I also had much milder dizziness and blackening vision when standing along with periodic morning nausea and faint headaches. I still don’t know what caused these symptoms but developed some theories:

  • Lingering adverse effects of the brain radiation. Effects can last for years.
  • Low blood pressure. The blackout vision and dizziness when standing is a classic symptom of orthostatic hypotension, a form of low blood pressure that happens when you stand up from sitting or lying down. I don’t know how to test for it. Under normal conditions my blood pressure has been around 110/60. Low but healthy low.
  • Anxiety. I’d been taking Lexapro for almost 5 years to treat air hunger that was apparently attributed to anxiety even though I never actually felt anxious in my mind. I had to go off when I started crizotinib. The air hunger has returned so I guess it’s possible that these are new physical symptoms.
  • Low blood sugar? I picked up a blood glucose monitor and am testing twice a day to see if there’s a correlation.

Regardless of the cause, the awesome thing is that all these symptoms started fading away our last couple of weeks in the states. Now that we’re home in Hong Kong, it’s even more evident.

  • I’m able to get out of bed as early as I like whereas, in the past, moving before 10am was a guaranteed way to trigger a “spell.”
  • I used to have to sit on the bench in the gym for a solid 5-10 minutes after a sauna before I had the strength to get dressed and take the elevator back upstairs to the apartment. A few times I had to sit down in the elevator. I’d then need to rest about 30-60 minutes before showering and then another 10 or so minutes before getting dressed. Yesterday I popped right from sauna to shower without any of the old passing-out-type feelings.
  • I confidently went to the grocery store by myself yesterday. In the past, Brad accompanied me since I’d frequently had spells while shopping.

I don’t know what caused the change but I’m testing a few variables. Was there something about my sloppy diet while travelling that helped? Higher calories? Higher carbs? I’d started taking daily CBD drops in the morning shortly before the improvement started – could that be it? Better air quality? Fat adaption from my keto diet? Now I’m grasping at straws. Maybe it’s as simple as the passage of time and the radiation effects wearing off as I become accustomed to Xalkori. I’ll do some testing and post an update when I have a better theory.

In the meantime, I’m enough of a functional human that I feel ready to get back to work. SCMP has graciously let me extend my unpaid medical leave; my first day back will be Thursday, March 7.

All my research and taking care of my health has become a full time job so I’m using these 2 weeks to catch up on errands from a month overseas and to set up processes that will allow me to keep up most of my protocol even when I’m working: streamlining my daily fermenting work; finding better sources for ingredients so I’m not visiting 4 stores to get what I need; teaching Brad to cook some stand-by meals; figuring out how to get all my rebounder and sauna time in; etc.

Most importantly, I no longer feel like cancer takes up 100% of my brain space. While I’m still not sure there will ever be a day that I don’t think about the fact that I have a terminal disease, I’m excited to be able to start focusing my attention on something else and let my cancer healing run on autopilot for a bit.

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3 comments

Jenni February 22, 2019 - 9:08 pm

❤️❤️❤️ glad to hear you’re feeling good.

Reply
Dave H February 23, 2019 - 12:00 am

This is good news. I’m so glad you had an enjoyable trip–just wish you’d made it to Florida! Take care. We love you, Dave & Lupe

Reply
Maggie February 23, 2019 - 12:18 am

It’s definitely on our agenda for next trip!

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