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Home My StoryMedical Updates March 2020 Test Results: Pandemic Edition

March 2020 Test Results: Pandemic Edition

by Maggie Jones

Last weekend, for the second time in two years, Brad and I took a one-way flight to another continent. This time to a continent where we don’t have health insurance coverage, with cancer, in the midst of the global coronavirus outbreak, with no income. Curiously, I’ve never felt more grounded and certain that everything is going to be okay. Nay, continue being awesome.

Things have been awesome for a while. Right before leaving, I was vindicated when the lesion my oncologist was convinced was a fifth brain tumor that should be treated with more radiation, turned out to be, in fact, radiation necrosis from previous treatment. MR Spectroscopy and perfusion tests proved there is no cancer in my brain.

Last week’s PET-CT continued the trend by confirming No Active Disease in my body. The primary lung tumor in my left lower lobe is still there, stable and inactive, reminding me to keep prioritizing my health and to continue this healing journey.

Looking good! Log scale so this variation is just natural fluctuation within normal range.

All my tumor markers are in the normal range and I feel pretty darn good. Side effects from medication, of course, but I’m increasingly used to them – peripheral and periorbital edema with remarkably impaired cognition, memory and attention from the lorlatinib; muscle aches and arthritis from the statins; and hilarious bloating and alternating constipation and diarrhea from who knows which drug. None of these are urgent or anything to complain about. In fact, I’m happy to report that I haven’t pooped myself once in 2020.

The brain radiation necrosis, on the other hand, is a little more urgent. My headaches and coordination issues have been increasing. Official guidance for this kind of injury is brain surgery to remove the necrotic tissue but I”m nowhere near there. Instead I’m hoping to stop or reverse the spread using Hyperbaric Oxygen Therapy.

Or I was, anyway, until the world went on lockdown and all the HBOT clinics in London had to close. Fortunately, all the tobacconists are allowed to remain open in an ironic interpretation of “essential services” during a public health crisis.

Bitterness aside, we’re evaluating options. Now that the stress of the move is receding and our days revolve around yoga, writing, and an idyllic, government-sanctioned daily stroll through Regents Park, my symptoms are receding somewhat and I’m comfortable waiting another two weeks to see if HBOT clinics can reopen. If they haven’t by late April, we’re looking into renting a chamber (so far nothing with enough pressure to be effective) or buying one (the costs, OMG – shipping alone!).

Regent’s Park in Spring

More than anything I’m just happy to be cancer free, in touch with my body and energy, surrounded by love — overflowing with it, really. There are no words to express how grateful I am to all of you for your support through this. I’m inspired by you and dedicated to giving back what I can to help others find the same happiness.

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