A Quick Update, So You Know I'm Still Here and Kicking

Yup, still here. I've just been using my ex-blogging time to do other things. Now that the mysterious allergic hives outbreaks, mastectomy and shingles are behind me, and now that my body has had time to rest and come back from all of that, I am focused on working to get my still too high tumor markers and CTC (circulating tumor cells) test numbers down.

It took one doctor visit to Dr. Cowan and a couple of consultations with Renneker, plus a couple of consultations with myself & my own knowledge/research, to come up with a ramped up protocol. That was the easy "planning" part. But then I had to actually implement the plan, which took several more weeks. It would take too long right now to explain why, which is one of the reasons I've stepped away from blogging.

Anyway, after much effort and a few frustrating false starts, I finally found a place in SF (rather than the first option offered to me, which was to drive to San Rafael two to three times a week) to get high dose intravenous Vitamin C infusions that could be given according to the specific protocol that includes a special kind of monitoring. Long story, again. I got started on that a few weeks ago, but then had to stop after one infusion because of confusion and lack of preparation on the part of the clinic. Waited two weeks, then had to start over.

During the two-week (or was it three?) wait, I forced myself to get going on the other "arm" of the revamped protocol, which is a modified (less expensive, less intensive) version of the Gonzalez protocol. Bottom line: I can't afford the real deal Gonzalez protocol. The Vit. C infusions alone, which are scheduled to last six weeks (then tumor markers and CTC checked again) cost around $3500 out of pocket, to be exact, plus time off work. Each infusion takes from 2.5 to 3.5 hours.  For me, this means using my now-almost-gone savings. But at least I still have enough savings for this. That is a good thing. If I have to continue with such infusions, or switch to some other expensive protocol, I'm going to have to take the fundraising route, ie. "Bake Sale! Bake Sale! Buy Your Cupcakes Here and Help Finance Jane's Next Out-of-Pocket Treatment that Isn't Covered by Her Health Insurance Even Though She Pays $751 a Month for It!"

That $751 a month pretty much only goes to cover standard tests (MRIs, ultrasounds, PET scans, blood tests) or surgery. Neither chemo nor radiation are treatments that would help me, and the conventional medical system has little else to offer except hormone blockers, which as you know if you've been reading this blog, are fraught with problems and are not by any means a panacea, and are in truth not the only option. There ARE other options, but they aren't covered by insurance. And that doesn't mean they're quackery. It means that the drug companies can't make money off them because in many cases they are natural substances that can't be patented. Or it means that the oncologists know nothing about them because they weren't taught anything except chemo, surgery, radiation, the sacred conventional triad for cancer.

See what I mean? Once I start a post, I can't stop. I have to leave here in an hour and a half to go to another Vit. C infusion. And then come home to prepare to teach a class all day tomorrow. And tend to running the Writing Salon, because Summer Session is beginning tomorrow. Thirty-two classes total.

But you are sorta updated now! Later...

Comments

[Elliot Margolies]

I'll bring my Toll House cookies and lemonade when you set the bake sale date.
xo,
Elliot

[Jill]

What kind of cupcakes and how much?!

xo

Jill

[John Underwood]

Thanks for update Jane, its good to hear your still kicking! (sounds like your kicking pretty damn hard!) Hang in there....JayBird PS love the new photos!

[Julie]

Me too! Might you develop a new navel, a wee stem?
It's SO good to hear your voice!

[harlan lewps]

If you turn orange I want self portraits. I'm happy to have you blogging again, even if all we get is once a month.