Clues and clueless

So my friends, come on a mystery tour with me. Forgive a little bit of science here, but don’t worry, I won’t cite the various oncology journals I’ve been reading this week. Here’s the thing. There are two drug treatments that get used with hormone positive breast cancer like mine (this represents the lion’s share of breast cancers). Tamoxifen is for pre-menopausal women. AIs are for post-menopausal women. They are both meant to deal with estrogen which, for cancers like mine, is the preferred diet. Cancer starvation is our main goal. (As a note, in cancer like mine, the drug therapy is as important as the chemotherapy to long term survival rates. With surgery only, the 10 year survival rates are less than 50%–low number. Surgery + chemo gets you to more than 60% and surgery + chemo + tamoxifen gets you to slightly above 80%.)

So Tamoxifen hasn’t worked for me, because I got cancer again, so they want to change it to an AI. But I have to be in menopause for it to change. So they took blood to see whether I was or not. One doctor looked at the blood results and said, Nope. Not in menopause. The other doctor looked at them and said, Yep, you’re in menopause. Weird, right?

Turns out there are three things they measure. Two are about ovarian function, one is about the amount of estrogen in the body. The doctors were looking at different parts of those two. My ovarian function is well into the menopausal place. But—here’s the rub—my estrogen is through the roof. Like crazy high, higher than it is for most women even at the height of their cycle. This is bad on so many counts, the most important of which is that high estrogen leads to breast cancer recurrence. What on earth could be creating such estrogen levels?

I scoured my diet. I stopped taking all my supplements, fearing that one of them was creating the estrogen banquet that had fed my cancer. Then I retested. Estrogen still through the roof.

So, I googled. Turns out there was something I was taking that is well researched for creating these super high levels of estrogen—Tamoxifen. Yes folks, you heard that right. The drug that is meant to starve my cancer may well be throwing the banquet instead. And this side effect is well known. Doesn’t this strike you as a problem?

To be fair, Tamoxifen isn’t supposed to suppress estrogen; it changes the way the body absorbs estrogen. But as far as I can tell, it’s still quite a bad thing for it to augment it so much.

But here we are. The doctors didn’t even hazard a guess that it was the tamoxifen, even though it’s well studied that tamoxifen raises estrogen levels. And so, moment by moment, my faith in the medical community leaks away. These lovely people, well experienced and well meaning, somehow aren’t asking important questions. And when I ask the questions, they just don’t know the answers and suggest I get back to doing the typical standard treatment. This typical treatment now means a shot to my belly each month, or another surgery to have my ovaries removed. It means the sudden onset of menopause from the incredibly high levels I have now to none over the course of days or weeks rather than years for most women. It means the side effects of menopause—depression, anxiety, memory loss, headache, sexual and bladder problems, osteoporosis, heart disease (one of the risk of sudden onset menopause is—I kid you not—sudden death. Now THAT’s a serious side effect). These might not be all horrible for me. But they might be.

And they want me to radiate too, with another set of side effects that makes my skin crawl. And I’d do it—I’d do it all—if I knew that these things really were right for me, that people were thinking about me and my body and my future and my cancer and my life. But it doesn’t feel like they are.

So today I am totally bewildered, and totally discouraged. I’ll bounce back. I’ll figure out a way to march toward the future again, loving each dawn and feeling grateful. But today I’m just feeling grey. I was so ready for this to turn to the easy part. I realize I wanted to retire from being a cancer patient, not just from surgery. Turns out, some jobs you can’t retire from…

(The picture today is an almost super moon to remind me that night is beautiful too.)

3 thoughts on “Clues and clueless

  1. W0w. That’s so strange. That which is supposed to starve the cancer feeds the cancer. That which you thought was your friend is your enemy. The world you thought you lived in isn’t the world you’re actually living in. You thought you were done being a cancer patient. But you’re not. Perhaps, on a fundamental level, you’re not who you thought you were.

    Hmm. Not much to hang your hat on. As Almaas says, “Reality does not take breaks.”

    Yesterday, my realities included a totally weird conversation with the person I know and love most in the world, who could have been from a different planet. Another conversation with a collaborator with whom I seem to be describing the same phenomenon with different (and incompatible?) language…. like this person is speaking English and I’m speaking Chinese. I’m seeing my more-fragile-than-I-thought country appearing to unravel, with wholly unpredictable consequences. And, I’m writing a book that I’m genuinely not sure I yet understand enough to write, yet I’m writing it nonetheless.

    From Howard Zinn, some words that I am finding comforting these days:

    “To be hopeful in bad times is not foolishly romantic. It is based on the fact that human history is a history not only of cruelty, but also of compassion, sacrifice, courage, kindness.

    What we choose to emphasize in this complex history will determine our lives. If we see only the worst, it destroys our capacity to do something. If we remember those times and places—and there are so many—where people have behaved magnificently, this gives us the energy to act, and at least the possibility of sending this spinning top of a world in a different direction.

    And if we do act, in however small a way, we don’t have to wait for some grand utopian future. The future is an infinite succession of presents, and to live now as we think human beings should live, in defiance of all that is bad around us, is itself a marvelous victory.”

    The future is an infinite succession of presents. Now, that’s reassuring!

    In this particular present, it’s 3 AM. I’m sitting at my laptop writing to a dear friend on the other side of the planet. My dog is at my feet. My butt is firmly in the high stool at the kitchen counter.

    I can live with that.

    Liked by 3 people

    1. Thank you my friend. I had lost the capacity today to see into possibility. I have been miserable and grey. And yet your middle of the night musings and Howard Zinn quote have opened something in me and maybe now I can find my way. In this moment, I’m reading a novel I wrote 25 years ago. I’m listening to my son crunch a snack that must be bad for him. My dog wants me to scratch him under the chin. And I am grateful our infinite presents are overlapping.

      Liked by 2 people

  2. Forgive me, Jennifer, for writing in technical terms and not in soothing poemics. I am still not object on that level. I think that Doug is right when he says: “Perhaps, on a fundamental level, you’re not who you thought you were.” This is true but you are subject to it and I have no way of helping you become object to it. And I have tried, although perhaps feebly. Please listen more closely to yourself.

    But technically, I can help. If your body is producing estrogen at the rate it always has and there is no place for it to go because the Tamoxifen is working then your estrogen levels will be sky high. You will need to ask your doctors and Google about what to do about this but there are only two approaches. First, find something that reduces the output of estrogen. Is there a pill, food regime, etc that reduces estrogen output? Second, find some way for your body to use the estrogen up. I have a recollection that testosterone may be involved in some way, that there is a relationship between the two but this may not be correct. What is estrogen used for in the body and can that function be enhanced? This will lower the estrogen level. In fact, you may need to do both.

    Going vegan will help and raw is even better. I know that you were vegetarian at one point but it doesn’t make much difference to health. I also know that you travel a lot and being a raw vegan in far away places can be very challenging. Your body is trying hard to heal and this takes energy. When you eat animal products it takes a lot of energy to digest them so there is less energy left over for your body to heal itself. When you eat cooked vegan food it does not take nearly as much energy to digest so there is more energy available for your healing. When you eat raw vegan food it digests itself and so takes very little energy. This leaves the maximum amount of energy available for your body to heal. When you are eating raw soy is not on the menu at any time. The more raw food you eat and the less meat or cooked food you eat the better off your body will be. I don’t expect you to change your eating habits but I thought you might want to know the effects food has on energy and healing.

    So, just some more things to ponder on. I am sure that you will make the decisions that are best for you.

    Liked by 1 person

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