Cane toads

In the first months of diagnosis and treatment, lists of questions littered my spiral cancer notebook in preparation for each medical visit. Questions like this:

Can my specimens be saved for potential genetic, pharmacogenetic and pharmacogenomic studies? (Yes.)

Should I take probiotics during chemo? (No.)

When/how will we scan or otherwise gauge response to chemo? (MRI, halfway and after chemo.)

How long between mastectomy and radiation of I don’t get tissue expanders? (about a month)

What are the pros and cons of a skin-sparing versus regular mastectomy? (Use your imagination.)

What is gated breathing? (a way to minimize collateral damage to the heart during radiation)

When can I get my port removed? (Unfortunately I rushed this one.)

Does L-glutamine help with Letrozole side effects? (Nah.)

Why does radiation make you feel tired? (It kills tons of healthy cells.)

And so on.

Yesterday I saw my cardiologist (well, his physician’s assistant) and my oncologist, for the last time for six weeks and three months, respectively. And my question lists were blank. I just can’t think of anything more to ask. I go to each appointment with the vague hope that I will come away with something new, but deep down I know the truth, as I texted a friend:

 “There’s really no new information to be had and I need to get used to that.”

“You mean no new info on how to deal with pericarditis?” she asked.

“Or cancer. Or prognosis. It just is what it is and it’s time to resume my life. At this point the experts don’t know any more than I do, I just need to find physical and mental coping[i] strategies.”

“It seems so shocking in a way, doesn’t it?” she asked.

“It’s like that with a lot of things, like learning disabilities, autism in kids … you just have to figure out what works. … I guess it’s not shocking to me because I feel like I’ve always been aware of the limitations of medicine. But emotionally you still want more definitive answers.”

“I guess that’s what I mean,” she responded. “It’s very hard to accept that there are no answers.”

We concluded that we humans are just smart enough to royally screw things up for ourselves.

And this, fundamentally, is where my love-hate relationship with medicine originates. I spent a semester during college studying rainforest ecology. I snorkeled naked on the Great Barrier Reef, camped on an island inhabited only by fruit bats, and acquired a tattoo and a collection of scrub-itch scars on my midsection as lifelong souvenirs.

I also learned about the clumsiness of human ingenuity. The cane toad, introduced to Australia to eat beetles that fed on sugar cane crops, proved worthless against the beetles but have become a bane to Native fauna thanks to a nasty poison sac on the toad’s back. It’s potent enough to kill a crocodile or pretty much anything else that messes with them, and the toads are now believed to number in the billions.[ii] They lurked everywhere and we were as scared of them as we were of the pythons in the trails and the venomous spiders in the showers.

We humans mean well, but sometimes we just don’t get it. We can’t predict all the impacts when we tinker with a complex ecosystem, and the human body is one strange and complex ecosystem.   

Medicine is mostly a process of trial and error – we look for things that seem to improve some kind of symptoms or pathology. We do clinical trials in an attempt to assess whether the benefits outweigh the harms. We trade risk, as my rheumatologist said – for example, decreasing the risk of pericarditis recurrence by increasing risk of, among other things, gastrointestinal disorders (with steroids) and deposits on the back of the eye (with Plaquenil); decreasing risk of cancer recurrence by increasing risk of fractures and osteoporosis (with Letrozole).

There are other risks and side effects. The skin on the back of my hands has turned leathery. Lotion pools in the cracks like rain on a parched desert. I looked up prednisone side effects again: yup, there’s dry skin. I tried to avert my eyes from the rest of the sorry litany.  

And those are just the known risks. We don’t understand all that goes on in the darkness under our skin. Everything we introduce has the potential to be cane toads.

And so, ultimately, the job of a patient is to accept the limitations of medicine. I don’t want to place all my hopes on some external cure or palliative or I will find myself taking layer upon layer of drug to mitigate the effects of the one before.

I am also trying to learn patience: Be a tortoise, not a hare, I keep telling myself. When I want to be off steroids NOW, when I have to walk instead of run, when I am tempted to double the reps in physical therapy – be a tortoise, be a tortoise. Slow and steady wins the race.  

An article in yesterday’s New York Times described a shift in the understanding, treatment and prognoses of breast cancer. This bit caught my attention:

“‘There’s no right or wrong decision, as long as patients are well-informed and choose what is best for them,’ said Dr. Jennifer K. Litton, a surgical oncologist at M.D. Anderson Cancer Center in Houston. ‘The old days of paternalistic medicine are gone.’”[iii]

I have learned what I can from my doctors, my body, the terrifying drug inserts; now it’s up to me to cultivate acceptance and patience, and to find a way to balance risk and reward in my life. We can look for guidance, seek a guru or a quick fix, but in the end, we are the only ones who inhabit our own lives and bodies.

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[i] I actually wrote “cooing.” I am a terrible thumb typist.  

[ii] Looks like the problem is only getting worse. See National Geographic News’ Poison Toads Leap Across Australia: http://news.nationalgeographic.com/news/2004/11/1129_041129_cane_toads.html

[iii] Outsmarting Breast Cancer With Evoloving Therapies, by Jane E. Brody: http://well.blogs.nytimes.com/2014/06/09/outsmarting-breast-cancer-with-evolving-therapies/?ref=health

Running down a trail near North Beach in Port Townsend. The simple joys...

Canoeing with Brian and Alder (hidden behind me) in Eagle Harbor.

You can put just about anything in a rice paper roll and it'll be delicious. Suggestions: shredded carrots or other crunchy veggies; shrimp or shredded chicken; and lettuce, fresh basil, cilantro and/or mint. Use sweet, salty and/or spicy sauce.

The wheel of life aka morning meds. 

 

Starting down beautiful Mt. Townsend.

Just had to add this picture of Alder jumping off a rock and throwing a frisbee. (credit: Brian Hild)

 

...and this one of me looking contemplative at North Beach. (credit: Brian Hild)

Ordway Mathfest. Play six games and get a cookie and milk. Math + sweets = Alder heaven.