I'm back! Finally. Whew. My last three months have been so interestingly packed with the unexpected and challenging. I will attempt to give you a nutshell version, something I am NEVER good at. But I will pretend to try. Maybe bullets would help me with that.
- Back on July 20th, I went to the oncologist and we made Big Plans for me to get going on the new improved treatment plan, which I've written about in earlier posts. I'll call it the Recchia protocol. It involved using Interleukin II, Acutane, and low-dose Xeloda (oral chemo). I was already on Xeloda (for a year) but this, we hoped, would further improve my chances of living longer with stage four cancer (maybe even living long enough to be able to take advantage of some new breakthrough treatment). It is a very expensive, out-of-pocket therapy, but after much tearing out of my hair, and some creative money-juggling, I handed the doctor my first $600 for one month of partial treatment (to go up to $800 the next month).
- However, right before I left his office, I pointed out to him that I had sprouted a red itchy rash on my collarbone/neck area, and was concerned that I most likely having a new reaction to the Xeloda, and was hesitant to begin a new therapy that involved using a drug that would ramp up my immune system (because the rash showed that my immune system was already in overdrive, and the Interleukin II might make that worse not better. Just my lay person's opinion.)
- Well, he blew me off. Said it was probably just a spider bite or poison oak. Huh? I told him no way, that's not what it was. I KNEW, in my gut, that it was the Xeloda. I've spent the last seven years getting better at paying attention to my body's messages. Getting to know my disease and how my body responds to it. But all I could get him to do was advise me to try some over-the-counter cortisone cream.
- Nutshell now: Of course the cream didn't work. The rash got worse not better. I tried other things but it began to rage out of control. Doctor went on vacation and I couldn't reach him because although he'd given me his email address, turns out my SOS pleas for help were going into his spam folder. I sought other help but it was too late; we hadn't nipped it in the bud in time, and soon my arms, legs, and several other areas of my body were covered in a wildly itching, inflamed mess of a rash.
- A whole huge convoluted saga of dealing with this Evil Rash took over my life. I was one big Walking Itch Machine. Torture. 24-7.
- Long Nutshell Short: Three months later I am still dealing with it. Am on prednisone to control the rash. Have tried three times to taper off prednisone, which is a nasty and dangerous drug, and each time, at a certain point, the rash begins to flare up again. The dermatologist has said that the worst thing possible would be to allow the rash to rage out of control again. So we up the dose of prednisone.
- This has meant that the Recchia protocol had to be put on hold. In fact, I've also had to stop all my supplements, which is what you do when your body goes into hyperactive allergic reaction. Even if the reaction was to a specific thing, ie. Xeloda, that reaction eventually takes on a life of its own -- your body's immune system starts "reacting to the reactions" rather than just to the original allergen. Like a chain reaction.
- Anyway, okay, forget the Nutshell Fantasy. Geez. Why do I ever even try?
- Oh, also, the dermatologist, mid-way through all of this, "Don't ever go back on Xeloda. It could kill you."
- Oh. Okay. So. Hmmmm. Change of plans.
- Now to the good news. At some point in this saga, I began to wonder if I could find a silver lining within this mess of a scenario. Was the universe trying to tell me something? Could there be a reason my plan to do the Recchia protocol had been stymied?
- So I started to focus more, again, on alternative options. I doubled my visits to the acupunturist, and he began to give me a new kind of herbal concoction. I also took advantage of my temporary "prednisone energy" (it's a steroid, and the one good thing about it is that it gives you lots of extra energy in the beginning, before it fucks up your body in all sorts of bad ways). I got way more creative with some creative entrepreneurial stuff I wanted to do for the Writing Salon (like getting the ball rolling on starting a reading series). And I started writing poetry again. I even began taking a private poetry tutorial. Because I wasn't dealing anymore with Xeloda side effects (not the rash, but other ones that I'd sick with for the past year), I felt elated DESPITE the rash! I felt wildly energized and pardoxically optimistic. I felt, dare I say, HAPPY. Because I was back in my more "normal" mode of living.
- I also looked really really hard to see if I could find ANYTHING else to do, outside of the box, to replace the shelved Recchia plan. I sought out more help from Dr. Renneker. We began looking into clinical trials for new cutting edge immunotherapy treatments that are different from the Recchia protocol. I also went back to see Dr. Cowan, my alternative doc, who I hadn't seen in many many months. I updated him on everything, and then said, "So, do YOU have any suggestions for me now? Any ideas for some new out-of-the-box treatment I can try?"
- And he said, "Yes. One." And I said "What is it?" And he said, "A medically supervised ketogenic diet, based on Thomas Seyfried's new book, The Metabolic Management of Cancer."
- This was only three days ago. But for those three days I've been a busy bee, studying up like crazy on this subject, and setting into motion a whole new plan of action. Finally! Something I am excited and hopeful about, again.
- I have lots more to say about it, but for now you can watch, if you want, the YouTube video above, which is one woman's experience with the ketogenic diet. This woman is not medically "sophisticated" in the way that she talks about it, but that doesn't matter. The gist of what she is saying is what's important. There will be more "sophisticated" ways for me to fine-tune my own ketogenic diet plan, which WILL be carefull supervised and monitored by professionals. This is what I am working on now.
So stay tuned. :-)