Warning: This Post is Rated PG. I'm Back to Phooey! and Darn It! for Now

Before my update, I just want to announce that my best healing treatment thus far for today was an email from Will, my dear boy, who wanted me to know that he and his hand-to-hand partner, Heloise, just finished competing in a big circus arts festival in Paris...or maybe it was Berlin. I forget. Anyway, THEY WON THE GOLD MEDAL and THE "PUBLIC PRIZE." And a tidy sum of prize money to go along with the medals.

I am SO proud of him. He peppered his email to me, btw, with a huge number of offensive swear words, remarkably similar to the ones that peppered my recent rant post. For example, his first line was: "

Mama!

We won the mother fucking goddammed gold medal!

He was teasing me, of course. It worked. I laughed all the way through the obscenities.

Moving on:

Here's my Cliff Notes Breast Cancer "Technical" Update:

1. A couple of weeks ago I finished my twice a week high dose Vit. C infusions (12 total, at a cost of around $3500 out of pocket), and the next morning raced to the blood lab to get tests (comprehensive metabolic panel, CBC/platelets, natural killer cells, lymphocytes)  to see if my tumor marker numbers had gone down down and/or my immune response had improved.

2. The tumor marker results were: CA15-3 went up from 93 to 116 (normal range is less than 32), the CEA went up from 7.2 to 17.2 (normal is less than 2.5), and the CTC went down from 46 to 40.

3. My overall immune response improved, ie. absolute lymphcytes went from 821 to 1669. Also, my "albumin" number was good, which Doc Renneker said was a sign of good health. Who knew?

4. Renneker also said that the rise from 93 to 116 wasn't that big a deal, in the sense that just time of day can affect numbers by 10 to 20 percent. Which isn't to say that ANY rise (or lack of a decrease) is good. But at least the rise wasn't hugely significant.

4. Both Renneker and Cowan said that the biggest concern is the leap of the CEA markers from 7.2. to 17.2. CEA markers can indicate any number of possible cancers, from breast to colon to GI to pancreatic to ovarian. But both R. and C. basically just said they didn't think I have any of those; I just have metastatic breast cancer that is very small (micrometastic tumors floating around "somewhere" - at least I hope they're only floating, which is better than attaching and growing). My wording here may be all wrong, but these are Cliff Notes, and I am rushing.

5. The one thing Renneker said that was different from what Cowan said was that in 15 to 20 percent of breast cancers, the breast cancer cells have a "neuro-endocrine component" that can cause "carcinoid tumors" in the GI tract, which could cause a rise in CEA numbers. I started to freak out when he said that, but then he explained that, in fact, carcinoid tumors of the GI tract are not that bad. He said people can live with them, feeling nothing, for 30 or 40 years. They may only be discovered after death. Who knew? And the treatment for them, if you do have them, is entirely different than treatment for breast cancer. A whole different  and non-toxic protocol that involves, for example, one shot a month of something called Sematostat. I haven't looked that up yet. No time.

Both docs also said I need to take the freaking blood tests over again, because no one told me that I shouldn't have had my blood drawn until at least 24 hours after my final high dose Vit. C infusion. This didn't occur to me because I had been told that Vit. C is water soluble and thus the blood plasma levels go down really fast. But for some reason, said the docs, this still could have somewhat skewed at least some of the test numbers (probably not the markers, but some of the other parts of the metabolic panel, It might explain why my "eosinophils" skyrocketed from 112 to 1161. Usually, it seems, eosinophils rise because of parasites, allergies, bacterial infections or viral infections. I had none of those. So...it might have been the Vit. C.

And Renneker suggested I add in two more blood tests that measure two more "neuro-endocrine" markers. If those numbers come back high, it would be a red flag for the GI tract carcinoid tumors, something that, he noted, hardly any conventional BC docs pay any attention to, but HE does. He is actually following 10 women with breast cancer who have high neuro-endocrine markers. Granted, it's unlikely I have carcinoid tumors of the GI tract, but why not take the tests and see? (Well, the health insurance company may not see it that way, since they don't acknowledge any connection between these markers and breast cancer, of course. But all I can do is try. What if I AM one of the 10 to 15 percent who have them? That could be the reason my CEA has risen.)

Cowan, on the other hand, thinks that the likelihood of my having carcinoid tumors is almost nil, BUT he was willing to write an order for the two tests anyway, because I insisted. He said, "It will just distract us." I said, "No it won't. It will just give us extra information that can't hurt and might help."

6. Even though my markers didn't drop dramatically or even AT ALL (except for the CTC, slightly), Cowan wants me to continue with Vit. C because: a) You need to do for longer than just six weeks, as is often the case with alternative therapies -- they don't work FAST, the way chemo does, say, or radiation. But fast doesn't necessarily mean permanently. Fast results can be very temporary. Then the problem (the cancer) just comes back, sometimes with even more vengeance.

I said, "I can't afford to continue to pay $1600 a month." He said, "We'll see what we can do to lower the price. Let me crunch some numbers." So I'm waiting to see what those numbers $$$ will be.

He also wants me to start taking mistletoe (Iscador) again. Three shots a week, which I can give to myself. I know how to do this. I did it for two years, back in the beginning. He's changing the kind, though, that I'll be using now.

Then he tweaked my supplements and we agreed that I would continue with the pancreatic enzyme and liver detox protocol (liver detox = coffee enemas; please don't think that's some quackery thing. Look it up on the Internet. It's a valid method of liver detoxification, which is a really really important way to rid the body of toxins that build up even faster when you are doing all these treatments. Liver detox also helps your body get rid of excess ESTROGENS, which is especially important if you have hormone positive breast cancer. I'm not trying to eradicate my estrogen, but I AM trying to keep it from "dominating" over my other hormones. I'm aiming for moderation and balance. A healthy liver can help me with that aim.

So.....that's where I'm at right now. I literally just got back from my appt. with Cowan, which is five days after my consultation with Renneker.

Oh, and BOTH of them grilled me about how I FELT. I told them both that I feel really GOOD. Better than I have in a long time, despite the higher tumor markers. Cowan commented on how I LOOKED better, too, than I did three months ago. I have more energy, my cheeks are rosier, I'm sleeping better. (I attribute this mostly to the liver detox, because as soon as I started doing it, I IMMEDIATELY felt way way better and had a lot more energy.)

Apparently, even when you have cancer, something as simple and unscientific as the answer of "great!" to the question "how do you feel?" is a good thing. It counts for something, when assessing the disease. It also counts for "quality of life."

Good thing, because I need lots of energy to keep earning  more money to pay for treatments that give me more energy (and hopefully are fighting the cancer, too, slowly but surely). I have not even come CLOSE to giving up in any way, shape or form.

Comments

[Marilyn Lloyd]

Jane, I believe the tests for carcinoid are a blood test and a 24 hour urine test. But I am fascinated by the connection of these cancers. My friend has carcinoid--Barbara the one I have talked about. If they suspect it you need to take those tests. Its not a cancer that you can live with for 30 to 40 years. Thats not true. The hormones carcinoid secrete ca affect the heart valves. I am just so surprised that there is a connection. Hope you DONT have it.

Marilyn

[harlan lewps]

Unbeleivable, all of it. I wish the only test you needed was the one where he says 'how are you?' and you say 'great!' and he says 'Well, that's fine. Come back in a year."

[Jay Underwood]

Ya HOOOOOOOOOOOOOOOOOOOOOO!

[Jill]

YAY WILL!!!! YAY JANE!!!!

[linda]

GREAT POST.