Tag Archives: outdoors

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Forever or not?

Once someone has cancer, do they have it forever?

I think that is a complex question. But one example comes to mind.

An older woman, in her early eighties, is seeing me. She wants to go back on hormone replacement.

“But you have a history of breast cancer.” I say.

“That was six years ago. And I took that horrible tamoxifen for 5 years and I still am having hot flushes after a year off it and I am sick of it. Give me hormones.”

“Hmmm.” I say. “Let me do some research.”

I call the oncology group south of us. This is over ten years ago when we had no oncologists in our county.

“How old is she?” Her oncologist is digging up her records. “Ok, got her. Hmmm. Well, she had a stage one cancer and a lumpectomy and five years of tamoxifen. THAT cancer is gone, for sure. If she wants hormone replacement, it puts her at a bit more risk for a new breast cancer, but the old one is gone. As long as she understands the risk.”

My patient is back and we negotiate. “Ok, the oncologist says your previous cancer is truly gone, but hormones put you at risk for a new breast cancer. At least, raise your risk a little.” Age is the biggest risk in women, if they do not have the abnormal BRCA I or II genes. “Also, if we have you on hormones, you have to do your mammogram, because I’d want to catch any cancer early. That’s the deal.”

“Fine, I want the hormones.” She signs a consent that I’ve prepared and we put her back on her hormone replacement.

“I want to hear from you, ok? Whether it works?”

She calls in a week, delighted. “No more hot flushes! I feel great!”

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I took the photograph at Mats Mats Bay last week. There is a sign about osprey nests. I look up and think, oh, yes! Pretty obvious if you look up!

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I don’t remember her exact age and I don’t remember if the five years was tamoxifen or one of the other hormone blockers. She could have been in her seventies. At first I thought, no way back on hormones! Then I thought, quality of life is important. Maybe I choose this photograph because the nest is out on a limb.

Some cancers ARE currently forever, especially those that are stage III or IV and metastatic. Maybe they won’t always be forever.

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Long Covid and framing

Long Covid is being framed as the immune system going nuts and there are all sorts of ideas about what it is doing and why. And it may be that more than one of them is correct. But the assumptions that I am hearing are that we have to “fix” it. A disease model.

Since I have been through four rounds of pneumonia, and two other rounds that were probably also flares, I have a different feeling. I think that Covid-19 is a really nasty virus and that the immune system is CORRECT to be on high alert and upset.

But wait, you say, we are just supposed to put up with it?

No, that is not what I am saying. Treat infection. I wouldn’t be here if it weren’t for penicillin and clindamycin, not to mention that we know that tuberculosis is airborne and infectious. I would most probably have died as an infant if we did not know what we did about tuberculosis. However, rather than thinking of my immune system as broken now, I am thinking of it as being hyperalert. Perhaps having PTSD. What it is really saying is, “Do not get another infection.”

How does it say this? In my case, relatively mild chronic fatigue. Also, slower healing each round, this time taking two full years to get back to a chronic fatigue baseline. I am still feeling very lucky to not have a hypoxia and permanent oxygen baseline. I am also feeling lucky that my fast twitch muscles work again. But I have about half of what I would consider my “normal” energy. But don’t we all judge that “normal” from our peak energies in our teens and twenties? One friend says, “Welcome to your sixties!” when I complain that each time it takes more work and is slower rebuilding muscle.

Am I an outlier? I don’t think so. I think I am the canary in the coal mine, warning of what can come. I think that ANYONE can get a version of this, resulting from too much stress, infection or a combination of the two.

I don’t think we have to develop medicines to tweak the immune system. I think we have to change our CULTURE in the United States. We have to learn to value the parasympathetic state, not just the sympathetic fight or flight, aggressive, go go go, peak performance state. I think we are driving ourselves nuts and setting ourselves and our children up for illness and damage and a highly unhappy immune system.

So my approach to my version of PANS or Long Covid is to work on the parasympathetic state. Listen to my body. Rest. Think about what I want to do and then plan half of it. Be realistic about my energy level. Because if I can convince my immune system that I will take care of myself as best I can, and rest daily, and not be crazy, it will stand down. It will calm down. It doesn’t need drugs as much as rest, good food, good friends, and some work but not too much.

In a high sympathetic nervous system state, the immune system works less well. It is hyperalert too. People are more likely to develop auto-immune diseases, with Hashimoto’s thyroiditis being the most common. People are more likely to get infections too. We have to learn to value and support the parasympathetic nervous system.

The start is rest. If that sounds awful, the next step is breathing. Five seconds in, five seconds out, count and use a timer. Start with a couple minutes and work up to twenty. Pay attention to how your body feels at twenty minutes. It may feel unfamiliar. It’s also hard to keep paying attention to that five seconds in, five seconds out, even if you count. I start thinking about my grocery list or food or a friend I want to call and I have been doing this for YEARS. When you realize that you are not counting, return again.

I am a minimalist on pills, any pills. Supplements, vitamins, prescription. None of the pills grow on trees so I don’t distinguish between “natural” and um, what, “unnatural”? I think of it as “less tested” and “more tested”. As an allopathic physician, I prescribe when necessary and I get rid of pills whenever I can. It is better to take a daily walk and eat healthy food. And maybe take a nap too.

So this is where I start. I attended a whole program on LDN this week, low dose naltrexone. It is being used for fibromyalgia pain and for Long Covid and ME/CFS fatigue and brain fog. It has a very reassuring safety profile, pharmaceutical companies don’t want to fund research because it is old and relatively cheap, and we don’t know how long to put people on it, or what it does long term. More detail soon.

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One thing I am doing for health and joy is dancing. I try to dance at the Bishop Hotel every Tuesday, because it makes me so happy. The music makes me happy too and my friends.