Joe sent me a thought provoking article from the New Yorker on the need for incremental medicine, the kind practiced by old fashioned generalists, contrasted with the heroic medicine practiced by specialists. Which of course had me thinking about how Cancering treatments might be different if we valued the more subtle aspects of medicine as much as the flashy ones.
To me, cancering seems to be a crescendo of sorts. The coming together of many contributing factors, which have been slowly accumulating over time until, Blammo! a perfect storm. Once a tumor is detectable cancering cells have harnessed their wild power into something more fierce than subtle. The response is necessarily heroic in nature. When you get the cancer diagnosis it is time to call in the heavy hitters. If this life were an ancient epic, you would want to call in the god of thunder.
However, if a person is lucky enough to have an after treatment phase, it is nearly all subtleties. The sharp focus of treatment decisions is replaced with a kind of guessing game. Side effects, the accommodations to pharmaceuticals that the body makes, are not nearly so dramatic. Boring is very very good in the post treatment reality. You need more finesse, maybe it is time for a goddess of the hearth?
Last fall when I decided to stop taking Tamoxifen, it was as a response to a spike out of the subtle into the intolerable range. The spike out of boring happened over the summer. In June I reduced my dose from 20 mg day to 10 mg daily, and yet I was still having symptoms. Though while two had reduced – the crazy leg and foot cramps and ubiquitous hot flashes, other things actually spiked. I was definitely noticing an upswing in the tinnitus and reduced hearing. My neuropathy too, which had previously seemed to have leveled off, now seemed to be worsening. Then there is the whole onset of symptoms from my gallbladder sludge and polyps. Not to forget the king of it all, the anxiety that invaded my life. All of these things combined to create resolution on my part, namely to step off of the standard of care Tamoxifen train.
I felt justified because gallbladder issues and anxiety are bothknown side effects of hormonal drugs, and because hearing and neurological changes may be connected to Tamoxifen too. By stopping that prescription drug I dropped my last connection to the oncology toolbox.
It may have been cowardly on my part, but I did not check in with my Oncologist about it at the time. Next week it will be time to pay the piper when I go in for my annual mammogram and my six month check up with my doctor at Compass Oncology. April 1st will mark three years since I last had chemo, this seems like a good way station to assess the long term fall out of my cancer treatments with him. Which unfortunately is probably unlikely to occur in the 15 minute appointment.
Back during chemo when my hearing changes and neuropathy were getting started, my oncologist claimed to not know if my rapid onset tinnitus was connected with my chemo. The reading I have done since, on how Platinum based drugs are known to have auditory impact, creates some doubt on my part to his sincerity. Or at the least whether his priorities include much beyond life and death. So while I am generally satisfied with his care during my initial year of treatments, I am questioning it for this very different phase.
There is no way to slice and dice whether or not I would have had a pathologically complete response to the chemo at a lower dose. Dosage levels are set due to weight. I don’t know how tolerance levels are adjusted. Because I know my body, and know that my system is sensitive, I am guessing that dosage might have been adjusted lower and still been effective, but who knows? The chemo didn’t kill me, and because of the chemo theoretically cancering won’t be killing me any time soon.
So does it make me petty to be bummed out that my fingers can no longer effortlessly distinguish between silk, wool, cotton and linen? Is it ungrateful to be frustrated by my ongoing word retrieval problems, or the loss of acuity of my hearing? Which BTW is impossible to prove since I have never had a hearing test in my life.
(The whole behavior modification and compression sleeve reality that make up the necessary response to my surgically disrupted lymph system is a completely separate can of worms. I won’t talk about that right now, other than to say that my swelling is currently less on the effected side- which may well be cooler temperatures, or may be related to the Tamoxifen.)
As I consider the questions I want to have ready for my doctor visit, I need to to know what I am hoping to get out of it. I know where my concerns fall on his triage list – most likely near the bottom. It is right that those who are critically ill at this time are a higher priority. However that leaves me wondering, if not his office, where is the venue for my concerns?
Can anything be done for my hearing, neuropathy, brain fuzz etc from the western medicine perspective? Is western medicine at this point the equivalent of using Thor’s hammer to put in tacks?
The change of my health insurance means that I will need to pay a sizable amount for this upcoming trip to the city. I am grateful to still have insurance, who knows how long that might be. However it brings to light how I want to prioritize my healthcare budget. If I am no longer taking any drugs from the pharmaceutical world, what do I gain from visiting the expensive oncology world? Might my primary care provider serve just as well to provide the semi annual blood work and orders for imaging? Especially since there are never any explanations offered to me of my blood work from oncology world? Is it time to retire my oncologist?
I continue to go to the Naturopathic/TCM clinic every 8 weeks, am still taking vitamins, minerals and chinese herbs daily, and go to the lymphatic specialist every 4-5 weeks. Right now I see my general care provider once a year. If I added one more visit with her that seems like I may well be covered in the surveillance department. If my body starts the cancering rodeo again then I would want to confer with oncology folks certainly- but if I am theoretically cancer-free, do I need a cancer doctor right now?
What is magic about 5 years? If I don’t spend the money at the oncologist, could I not spend it on other life enhancing health pursuits? If there is any cancering going on in my body, it is subtle- what If I just turn up the volume on self care? Could that keep the ghostly threat of recurrence at bay? There is no good answer to why some folks progress to stage 4 and others don’t. So, just what am I paying an oncologist for if they would be just as surprised as anyone else if recurrence does happen?
All in all I am generally non compliant at this juncture to all of the suggestions coming from the oncology tool box. A trend which started when I refused Radiation. It seems that the subtle medicine as described in the New Yorker article may be more in line with what I need at this time. We will see how it goes next week when I visit Dr. Thor and fess up to quitting tamoxifen 2.5 years early.
Here is the New Yorker article:
Tamoxifen as a gallbladder risk factor:
General tamoxifen side effects: