Is Tamoxifen the Boat?

Columbia at daybreak, on my way to work last week.
Columbia at daybreak, on my walk to work last month.

There is a humorous fable about how God intercedes in our lives, probably told in millions of churches the world over.

A big storm sets the water to rising, and soon it has turned into a flood.  A man looks up at the sky and secure in his faith, he asks God to save him.  Just at that moment a neighbor knocks on the door and says “Jerry, come with us the water is rising, soon the road will be gone.” and Jerry says “God will save me.”  Then the waters come up to his house. Before long another neighbor comes by his window in a boat, and says “Jerry get in!”  to which Jerry replies “God will Save me.” The waters continue to rise until Jerry is on the roof praying. A coast guard helicopter comes and calls down – “Hey Mister grab the rope!” to which he replies ‘ No thank you I’m waiting for God.” the water rises a bit more and Jerry drowns.

When he gets to heaven and is in the presence of God- Jerry says “But I had Faith in you, Why didn’t you rescue me?” to which God replies. “I sent a car, a boat and a helicopter, what more did you want?”  badum bump.

So lately I’ve been thinking about Tamoxifen and wondering. Is this the Boat? Is taking that little white pill every night for three more years the thing that will keep my cells from veering into cancer-land again? Aren’t I lucky to have the tamoxifen tool in my tool kit to remain healthy and well?

The thing is I am beginning to notice more and more side effects creeping into my life after being on it for nearly two years. Weird itchiness, ankle swelling, leg and foot cramps from the beginning,  persistent brain fog – and the ubiquitous hot flashes galore. Does the yucky taste in the back of my mouth upon taking it a sign that my body does not want this type of pharmacological interference?  Is the risk if uterine cancer, liver and ocular damage worth it?

It is hard to live fully in the bunnies and rainbow world when I am taking my daily dose of “insurance.”  I recently learned that nearly half of all patients given a five year prescription for Tamoxifen do not finish all five years.   Which sets me to wondering. What is being done to follow those women? Do they experience a significant increase in recurrence and metastatic disease? Then there is the nocebo of my own thoughts, some days the fear that my frequent leg cramps are indication of possible blood clots far outweighs any fear of a return to cancering.

Daily I take 5 supplements plus drink a formula of Chinese herbs twice a day- all of which occur to me as nurturing to my health and wellbeing. I don’t begrudge them a bit. So what is so different about the Tamoxifen? Perhaps the side effects are simply me getting older, and being a bit paranoid about my health, and I am mistakenly attributing all the ill effects  to the Tamoxifen? The magnitude of my stirred up thoughts by just one little white pill is possibly a bit ridiculous.

I know that there are many people on all kinds of pharmaceuticals -the arsenal of western medicine is vast. Do people on Statin drugs feel like this? What about those taking medicine for their diabetes? What about people who make positive changes in their life , and continue to take certain western medications even after their usefulness has passed? Does the medicine eventually cause more harm than good? With only one western medicine prescription I know I am very lucky. But because I am doing so well it begins to seem so easy to let go of the Tamoxifen safety net. Is this a false sense of security?

Is Tamoxifen the rescue boat?
Is Tamoxifen the rescue boat?

One argument against stopping comes from the wise words of Dr. Allderdice, the naturopath I visited during my chemo treatments. He explained that in a way the presence of cancering cells is not related to how “healthy” you are. And while my relatively good eating habits and regular exercise are beneficial – “No one is cured of cancer at the spa.”  General good health does mean that you can process the strong western medicines with less harm. Just as younger people recover better from anesthesia than older folks, younger healthier bodies usually tolerate other medicines better.

One of the first tenants I adopted on this trip came from some other wise words, this time passed to me by a friend Lynn, from her QiGong master, simply, “Accept all help.”  I have looked for help in all kinds of places and found it. I have aligned gratitude with perceived healing experiences to maximize the good.  For instance, smelling spring flowers.  (Which by the way is a national past time in Japan. There are national nightly bloom reports during apple blossom season.) But as far as I know flowers have not cured anyone. So even though I am a huge believer in the theory of myriad contributing factors to our health I am realistic that any one small factor is likely not enough on it’s own.  Which means that I neither trust Tamoxifen to be the sole thing standing between me and renewed cancering, nor do I believe any other particular thing I have done or will do to be acting alone.

I am in a strange place, in which a pCR – the most favorable outcome of targeted therapies and chemo, has put me in an area of the statistical map that is uncertain. Do I have a 30% chance of recurrence or a 3% chance? If Tamoxifen cuts that chance in half, am I gaining a 15% advantage or a 1.5% advantage? Do my many alternative complementary medicine and mind set efforts reduce the need for three more years of Tamoxifen? Or am I being lulled by delusional thinking by turning away from a major source of help being offered?

Certainly no one is suggesting to me that I stop taking it.  And perhaps the benefit of Tamoxifen is less about what it does in my body and more about the soothing benefit it has on those on my healing team, or those who love me? A reassurance which allows them to be thinking positive thoughts about my longterm outcome.  If I were to stop, would their level of worry be detrimental to my health?

For right now I will stay in the boat.
For right now I will stay in the boat.

The strategy now is gathering more information from studies about Tamoxifen, wading through numbers trying to get an accurate assessment of benefit vs risk. A task that is harder than you might think, as all the studies seem to have an agenda they are trying to push.

In May I will see the Oncologist again and I hope to have some questions answered about my specific situation. There is a new staging tool announced in March from MD Anderson that takes HER2+ status into account, something which wasn’t available before. So perhaps I can get some less magic 8-ball numbers for the first time.

Until then I will continue to take Tamoxifen each day, along with the homeopathic remedy made for me recently by Dr. Fruehoff to fend off any adverse reaction I may have to it.  I don’t want to jump out of the rescue boat as it were.


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