I had a huge moment of poignancy just a few days ago when I re-read what I’d posted to Facebook exactly one year before, about the strangeness of my world post-craniotomy. I wish now that I’d been able to keep up with posting here throughout the past year, and over the year I saved a sheaf of the past year’s Facebook updates to repurpose here, but for now I’m just going to bring you up to date in one fell swoop. It’s hard to believe all that has happened.
Is it gone?
I’ll cut to the chase: my latest brain MRI, spine MRI, and abdominal CT scans all show that things are going wonderfully. My brain is healing from last year’s craniotomy. There are no new brain tumors. There is one remaining brain tumor that’s been there ever since I began having brain MRIs four years ago, and it’s stable and smaller than in the past. All my spinal tumors (more on those in a bit) are gone now except for the one at T6 that I had radiated last September, and it’s now smaller and less distinct than before. The scattered wee tumors in various spots in my abdomen (lung, breast, and above my spleen) are either gone or much smaller than before. The tumor in my lower right pelvis, the one that was once a lymph node and exploded four years ago to four centimeters and set off this whole chain-of-cancer thing that horrible day in the ER, is way smaller now, and measures either 1 millimeter (unlikely) or 1 centimeter (more probable), depending on the level of accuracy of the person who read my scan. Either way, it’s a win.
Yesterday I went to hot yoga for the first time since September 2014, which is when I had to stop yoga because of the massive unrelenting headaches that took me down the brain surgery path. I felt alive doing yoga yesterday, even though I could do less than half the class. I lay on my mat for much of the class, sweating and panting, feeling my heart beating hard and fast and sweat droplets rolling off me onto my mat. Today, of course, I can barely lift my arms. My tendency is to jump right into things, so my takeaway is to go much more slowly next time.
Three weeks to live…
Let’s go back to spine tumors. Last August, coincidentally on my unofficial wedding anniversary with my beloved, we got the news of seven tumors in my spine. Leptomeningeal carcinomatosis. This carries a THREE WEEK PROGNOSIS, thirteen weeks with treatment. By “treatment” they probably meant “chemo that will kill you anyway, oops”. Of course I didn’t believe it, just like I haven’t truly believed any of my dire prognoses, but Kahuna was shattered. I would have been too if our situations were reversed.
That’s when we re-entered the world of magic. More on that in a bit.
Immunotherapy to the rescue!
I consider myself extremely fortunate to have melanoma. Not in the “cancer is a gift” way (ugh, please don’t ever say that phrase to a person with cancer), but because melanoma has historically been so deadly, money was poured into research to combat it and it’s one of the first types of cancer to have some new and actually effective treatments that don’t kill people while killing their cancer cells. Immunotherapy. It’s not chemotherapy. Immunotherapy boosts the immune system to help the body go after mutant cells, which means cancer, while chemotherapy is a barbaric treatment, a nuclear option, that kills all kinds of cells including those that make up the immune system, leaving a person with less cancer but also less chance to ever be healthy. I had two infusions of immunotherapy, Keytruda and Opdivo, brand names for the drugs pembrolizumab and nivolumab, which I received under a clinical trial through Dr. Gregory Daniels at UCSD (University of California at San Diego) after consulting with Dr. Antoni Ribas of UCLA, a world-class doctor who was also the principal investigator of the first clinical trial to use pembrolizumab and who is a melanoma expert. Pembrolizumab is the same drug that President Jimmy Carter received, and he’s done quite well on it. Not everyone does, and I am fortunate. I had my infusions in August and November 2015.
The land of golden light
Not long after I received my first immunotherapy infusion is where things got sticky. I don’t remember much of it, in fact I don’t remember much of the past two years. But what I know is this:
- I had radiation, in this case CyberKnife, to my spinal tumor at T6. This, added to the expected inflammation response (a normal immune response caused by the immunotherapy infusion), caused a perfect storm and I had my second tonic-clonic seizure (the first was while coming out of anesthesia after my craniotomy) in the ER the day after the radiation treatment.
- Based on those two seizures and other symptoms, I was misdiagnosed for months with epilepsy, but took large amounts of anti-seizure medications while we thought I had epilepsy. I could barely walk because I was so drugged up. I still take smaller amounts of two of those medications (Keppra and Gabapentin) but I’m tapering off.
- I developed multiple compression fractures in my vertebrae at some point. They grew quite painful and I couldn’t ride in a car without experiencing sharp shooting pains in multiple places along my spine. In September 2015 I had surgery (kyphoplasty) on the fracture at L2, which reduced the pain considerably.
- The infusions created a huge strain on my liver and I developed hepatitis.
- For hepatitis I took prednisone, a steroid which causes all sorts of other problems like spinal compression fractures. Ha!
- Oh, and the misdiagnosis? Turns out I have adrenal insufficiency, which is a life-threatening condition that I need a special medical bracelet for and that could have been treated with functional medicine, which my beloved Kahuna knows all about.
- Plus I have Lyme Disease, as if Stage 4 cancer and everything else weren’t enough.
Here we go with the death part, what I think of as the fun part. It happened at night. I had been trying to go to sleep but my heart wouldn’t calm down. I know lots of breathing techniques and mindfulness practices and none of them worked. My heart just kept pounding faster and faster, and I couldn’t make it quiet down. I felt like such a failure. But my heart kept pounding and it got harder and harder to breathe. Soon I got really scared. I thought I was going to die. This wasn’t a panic attack — I had had those in the past. Breathing into a paper bag wasn’t going to help me. I needed help but I couldn’t think clearly. I tried texting my beloved. When he didn’t answer right away, I figured that my strategy for getting his attention was lacking. What else could I do? I think I tried calling him on his phone, but it was the middle of the night and if he wasn’t answering a text he probably wasn’t going to answer a call either. I was panicking. I really needed help but I couldn’t think straight. I needed to breathe. I couldn’t breathe. My heart was pounding out of my chest. I needed an ambulance. I was going to die. I was so afraid. Finally I got up and pounded on the wall between our bedrooms. I had no coordination. I yelled HELP as loudly as I could. My beloved said it sounded like “Hehhhh”. I couldn’t even say “help”.
The ambulance came, they came right into my bedroom with their shoes on and all, and they put a mask over my face and somehow I got to the ER and I entered a doorway into a land of golden light where the people welcomed me with open arms. I remember the light. I can still see it, a particular shade of goldenness that doesn’t exist in this world. I came back, back to the ER and back to my beloved, and I told him I chose to come back because life with him was way more fun.
And now the magic
I decided today to accept the fact that my brain may need YEARS to heal after my two surgeries. There’s a constant high-pitched sound in my head — tinnitus — that may be a result of my craniotomy and adjusting intracranial pressures. I just spent two months receiving hyperbaric oxygen treatments to help heal radiation necrosis in my brain and to hopefully stave off blindness caused by radiation-induced optic neuropathy. I still have adrenal insufficiency and it may not be reversible. I have bursitis in both hips and tendinitis in one knee. My joints click. My vision is weird. I take more than 50 kinds of supplements, herbs, and medications every day. I don’t eat gluten, sugar, or alcohol and I may never be able to have those things and still maintain my health. I have near-daily Herximer reactions (flu-like symptoms, body pain, fatigue, brain fog) from treating my Lyme Disease. I haven’t driven a car in almost two years. I experience time differently than I used to, and my memory works differently now too. I will never not have cancer.
And all of this is magical.
After my near-death experience, I thought everything would be different. And it was, only not in the ways I thought it would be. I thought life might be easier after not-dying, and it isn’t that life is easier (because it’s not), but I do seem to be better equipped now to live the life I want.
I’m an Oracle, in the tradition of the Delphic oracle of ancient Greece. I see energy and I see spirits and I see the future of humanity. I see people’s individual life destinies. I’ve always had magical abilities like this but since choosing to walk back through the veil into this world and accept the life I’ve chosen, my magic has expanded a hundredfold.
I’m happy to be alive. Life is just beginning after four years of challenge after challenge. The doorway into the magic golden land is actually here. Magic on Earth is possible.