[cancer] Recovery curves

I’ve spent quite a bit of time the past few days with (and regretfully less time with the delightful , sadly). We’ve been talking about a lot of things, including the dynamics of illness and recovery. I had an insight which I don’t yet fully understand, but I believe as I pick at it, this insight will inform my continued journey of cancer.

I’ve been arguing for a while both sides of the question as to whether I should view my situation as chronic or acute. The cancer is most likely acute in the medical sense that I still reasonably expect a full recovery and a return to my baseline pre-cancer health. In other words, the adaptions of chemo are not permanent as they would be with MS or lupus or other chronic conditions.

At the same time, between surgery, chemo and post-chemo recovery, even assuming full recovery, I’ll have been significantly out of my baseline health profile for ten to twelve months. That’s far longer than the acute distress of influenza, or even minor to moderate trauma. In other words, my behavioral and emotional/social adaptions effectively need to mimic those of a chronic illness, in that they stretch over a long term, far past the six-week window of habit formation and habit breaking. To put it more simply, going to bed with the flu for a week doesn’t really change your life. Going to bed with chemo for six months does.

This chronic vs acute distinction has a lot of implications I’m still exploring. It’s not a judgment, it’s not an issue of attitude, it’s an analytical tool. And talking to about his medical experiences of this last year has expanded that tool, as I’m now noodling with the idea of recovery curves.

In an ordinary acute illness, minor-to-moderate surgery, or minor-to-moderate trauma, without further complications, the recovery curve looks something like this:

recovery_curve_1

You experience a rapid decline, then you slowly improve until you return to your baseline. The degradation in quality of life and the medical stress is front-loaded, while the majority of your time is spent getting better, both literally and figuratively.

Chemotherapy (at least for someone with my general prognosis) has a recovery curve that looks something like this:

recovery_curve_2

You experience a slow decline over time, with a relatively compressed period of of getting better once the chemotherapy has conclude. The degradation in quality of life and the medical stress is continuous (albeit uneven), while the improvement is narrowly backloaded. (Cut the recovery backload off that curve, and you have something approximating the long term course of a true chronic illness.)

What does this mean? Heck if I know, yet. But it’s interesting to me. It has implications for my self-image, my self-management, how I allocate and acknowledge my emotional, social and physical resources. Hopefully I’ll produce a much more cogent analysis in the next week or two. In the mean time, I’m curious what you guys think, especially those of you who have ridden either of both of those recovery curves. And if you bear a true chronic illness, how does this read to you?

5 thoughts on “[cancer] Recovery curves

  1. Kai Jones says:

    Define “true chronic illness.” I have asthma and severe allergies–severe enough that I have to carry a rescue inhaler and a pair of epipens everywhere I go. I didn’t develop these conditions until my mid-30s, so they were changes to my health, not lifelong conditions. There’s a list of things I just don’t do, in order to prevent life-threatening reactions (e.g., eat raw produce; laugh hard for very long; spend time around cats or in severely cold air).

    In addition, I take a set of prescription drugs on a daily basis to manage these conditions, to minimize the effects and the chance that I will have a life-threatening reaction to something. I will likely take these drugs daily for the rest of my life.

    Some of this is fewer than 6 months old, some has been going on for most of 10 years. The initial diagnoses were rough: adjusting my perceived identity, grieving the old self, learning new behaviors, trying different drugs to find what worked, giving up or severely restricting exposure to situations and substances that trigger attacks. On the other hand, changing my life and finding the right prescriptions have meant that I have higher levels of pleasure and functionality most days, that I recover much faster on the rare occasions when I am ill, and that I know how to take care of myself when I have a bad reaction.

    I don’t think of “recovery” or a curve. I am not returning to a previous baseline, I am living a different life with a different standard for normal. Some ways I’m better, some ways I’m worse. I have onerous and expensive daily routines and restrictions, but I also have better overall health, energy, stamina, predictability, and long-term survival. I suffer less self-pity, sadness, and depression; I’m more capable of self-care and the care of others, of participation in social life, of pursuit of learning and pleasure through hobbies and pastimes. I rarely miss work due to illness anymore, where formerly I took 20 or more sick days a year.

    But I will never be as healthy and vigorous as I was at 20 or 25; I’ll always be at risk of a life-threatening asthma attack or allergy attack, either of which might at minimum necessitate a ride to the ER. I’ll always have limitations on my choice field that people without chronic illness don’t face, and expenditures of money and time for regular doctor visits and prescriptions. I’ll always have to watch my diet, keep my drugs with me (my carryon when I fly is about half full with prescription meds, and I can’t leave the house with just a wallet and keys every again), and take other precautions in my daily life.

  2. Meran says:

    Yeah, I’m pretty much like the previous poster. I have FMS and/or tertiary Addisons… Since 1994.
    Over the years I’ve had many docs, all with their own accepted views of prescriptions that should make it easy to cope. After a 70 lb weight gain caused by those drugs, now they talk about heart and cholesterol. I got every side effect noted on each med (and am now off nearly all meds in order to at least not get worse). Most docs don’t like that. Every new doc means new validation and explanation. But hopefully also better monitoring (I had a great doc in Colorado; he wouldn’t move here, sadly).
    My life is about 10% of what it was, and on my bad days that makes me very frustrated. On my good days, I might accomplish two very complicated tasks (I was always an over achiever, kinda like you 🙂 ) Planning my weeks can be very frustrating, as my ability to DO anything changes with the sunrise and humidity. Ignoring it doesn’t work well, tho my stubbornness gets me past and thru many difficulties.
    There is NO cure, so acceptance is important. However, I have turned into my own Specialist (this was told to me by that Colorado doc).. You never stop searching, trying new things, reading research papers from obscure medical journals… You can’t. A regular MD sees too many people with diseases too varied. There ARE no specialists in just FMS (even if the adverts say differently). Another thing: reading in med columns, there’s a “new” holistic approach … A place you can get all the treatments that are suggested… Acupuncture. Massage. Hydrotherapy. Physiotherapy. Pychotherapy. Dietician. Etc. In one week, seeing all these people, it would bankrupt us inside a year AND take over 40 hrs a week, not counting driving to each appt. Where’s the life then? And the energy drain that accompanies that is just not acceptable. A nap and some artistic endeavor is much nicer.
    So, we learn to adjust. Moan a bit when someone is sympathetic, sleep when we’re able, read when we aren’t (thanks for that!) and enjoy the sunshine and sweetness when we find it.
    Life is more precious to me now; I may be much much slower but I see more clearly than when I was “healthy”.
    I do bitch about what I can no longer do 😀 Then push against that boundary as hard as I can!
    Does that answer your question? lol

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