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[cancer] Recovery curves - Lakeshore — LiveJournal
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Jay Lake
Date: 2010-02-25 05:53
Subject: [cancer] Recovery curves
Security: Public
Tags:cancer, health, personal
I've spent quite a bit of time the past few days with markbourne (and regretfully less time with the delightful e_bourne, 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 markbourne 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:


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:


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?

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shelly_rae: Blue Hippo=Strong
User: shelly_rae
Date: 2010-02-25 16:34 (UTC)
Subject: (no subject)
Keyword:Blue Hippo=Strong
I'd think there's more little "v"s in the chemo pattern. You go down and up, down and up not just down. Recovery is rapid. That's part of my frustration with the TBI, I get small pieces back slowly, then chunks in three month intervals. But the line of recovery is looong. Not weeks, months, but a year or more. Yet somedays I wake up and think, "hey! I can feel my cheek!"

Yet, both cancer & the brain injury have left lingering marks--the new normal. I wouldn't call them acute (well the jury is still out on TBI) but my gastric issues will always be with me as will other things that changed for me forever. Yet. I do so very much. More than some healthy people--but less than I want.

Perhaps recovery, like other experiences, are on that continuum of life/living where you have to just make your mark and decide. "This is me."

love you.
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Jay Lake
User: jaylake
Date: 2010-02-25 16:52 (UTC)
Subject: (no subject)
So many normals... :(
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User: elizaeffect
Date: 2010-02-25 16:40 (UTC)
Subject: (no subject)
Keyword:this is bob ross
My two cents - as someone with fibromyalgia, a chronic condition, my "recovery" curve looks more like the top one, except I'm never going to get back to 100%. Following an extremely powerful (acute) onset three years ago, I've been slogging very slowly back up the curve. There's no cure, just management, but in three years I've adapted adequately to mind-fuzzing medication, constant tiredness, and ghostly pain that flares whenever I'm too tired or stressed. I am a diminished version of myself, with diminished abilities and potential, and probably a diminished lifespan thanks to chronic stress on my system.

I think every chronic illness is going to have its own curve based on severity and prognosis. Mine has reached a stage of management where I can pursue a (redefined) normal life, as long as I'm miserly with my spoons.
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User: martianmooncrab
Date: 2010-02-25 20:31 (UTC)
Subject: (no subject)
I dislike the chronic/acute tags, Cancer as it appears to me is an episodic physical occurance. The treatment for it is constantly evolving.

Our modern culture is Quick! Fix! All betta now! The drive through options for wellness. Take a pill and its cured thinking.

In the past when someone had a pretty serious illness, the recovery portion used to take years, the long stay in the sanitorium or the world cruise to warmer climes, it was understood that it took a period of time. Time wasnt as compressed as it is now.

When being treated today, if the doctors cant "cure" you immediately, the problem is then considered to be the Patients fault. Having a long term debilitating illness that cannot be cured by definition is then moved over to the "must be crazy and starved for attention/drug seeking behaviors" side of the board. Because it cant be "cured" they push all sorts of anti depressants or mood drugs at you. Now, if you have several medical issues mixed in, it gets even more challenging to manage it. Or if you develope an allergy or a reaction to the medications. Lets not forget the other fun portion if two or more of your medications dont like each other...

Like the word Acute, when connected to illness, its not cute at all.
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User: mmegaera
Date: 2010-02-25 21:08 (UTC)
Subject: (no subject)
On a much more minor level, I had a bum shoulder for almost a year, by the time I'd talked myself into realizing it was bad enough to go to the doctor for, the tests had been run, it was diagnosed, the determination that surgery was necessary had been made and I'd talked myself into it, the surgery was scheduled, and I went through the six months of PT that brought it back to what feels like (but technically isn't, according to my therapist, but is the best it can be) full function.

It damned well felt chronic while all this was going on. Like it would never, ever be normal again. I vividly remember the first day that I realized it no longer hurt and that I could lift my arm straight above my head for the first time in almost a year. I'm pretty sure my mother could hear me (she's in Texas, I'm near Seattle). I know my neighbor could because he came over to ask if I was okay. It was a wonderful, wonderful moment.

I hope yours is even better.
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User: quantuminsanity
Date: 2010-02-25 22:34 (UTC)
Subject: (no subject)
Without any time variables on the graph they pretty much look like mirror images of each other, which I'm guessing is not the case.

I'm diabetic, which is labeled as a chronic condition, but because I've had it since I was 4 to me it's normal. At first glance my line would be a straight line with some small wobbles in it, but if you put me and a healthy person on the same graph my straight line would be lower than their straight line.

I don't really know where I was going with that other than to criticise your graphing skills :p
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Jay Lake
User: jaylake
Date: 2010-02-25 23:32 (UTC)
Subject: (no subject)
It's not even graphing, really, it's just doinking with GraphicConverter. I want to do some actual graphing to plot different side effect transitions, but that will require more Excel brains than I have today... :-p
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User: alumiere
Date: 2010-02-26 00:03 (UTC)
Subject: (no subject)
I'm not sure either of these graphs make sense to me, nor the comparisons between chronic and acute illness.

I'd be curious to see how more people would scale their conditions and quality of life though. Part of this is because I feel like I've gone through both the short term and long term sides of the graphs, but I don't think either of them are terribly accurate.

My TMJ, shoulder problems and fractured hip (plus things like the chronic bronchitis, two months of something akin to but not mono, measles, rubella, chicken pox, etc) all seemed to follow the pattern for acute problems in most ways, albeit more drawn out and requiring me to take better care of myself than before those things happened. The changes from TMJ and in my shoulders and hip are all permanent, but I returned to a level state in time (with meds) and was able to resume nearly all the activities I did before those happened.

On the other hand, the thyroid disease and associated immune dysfunction, the fibromyalgia, and the chronic fatigue are also permanent problems. But those manifest themselves in jagged Vs; working with my Doctors I am able to control most of the symptoms at least some of the time. Which means that I take more medication, but again, I returned to a more-or-less normal state, and resume most of the activities I did before, albeit in a more limited way.

Then we have the third set of comorbid conditions - the tinnitus, the hightened sense of smell, systemic candidia and the transient global amnesia; whatever is causing me to have no spoons at all painwise, and no energy most days. Those are also beginning to look permanent. And those seem to be taking the pattern of jagged V's that never return to the zero state.

I adjust to the limitations of one problem and another appears. My quality of life isn't returning to normal; I'm not regaining my ability to do the things I used to; even with major medication the symptoms seem more frequent and severe. I don't know what the answer is, or even if there is one, but I would really like to know what's going on now. And perhaps to find medication that controls the problems so that I can return to a semblance of normal.

Edited at 2010-02-26 12:04 am (UTC)
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User: wheelwithin
Date: 2010-02-26 02:31 (UTC)
Subject: (no subject)
I agree with a few other commentors that the chronic graph is missing the first acute dip that leads to either diagnosis or death. (That sounds a bit melodramatic. But it's more or less true.) I'd guess that very few chronic illnesses are diagnosed through routine check-ups, and that it usually reaches a crisis point before it's even diagnosed, much less treated.
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User: (Anonymous)
Date: 2010-02-26 09:51 (UTC)
Subject: (no subject)
Long time lurker first time poster with a few Friday night wines under the belt, so please excuse any nonsensical jabbering in what follows...

It's a tough question, and I think I lean towards Shelly Rae's summation that, at some point, you decide that "This is me." It's you at that point and that is the "you" to which you must adapt.

I may be wrong, but I believe that most of us have a view of an ideal "me". We rarely meet that level, and certainly don't when we battle an acute medical condition. When it's chronic, there can be a realisation that we never will. You could argue that ageing has a similar effect - you could even argue that it too is a chronic illness. As humans, we're not so good at accepting what we are. It's what makes us strive to achieve but it also means that we often measure ourselves and find ourselves wanting.

This has been an interesting and pertinent point for me for a number of years. I'm now thirty but had my first MS attack at twenty one. I'm only now coming to a position of acceptance but I do wonder how much of that may be related to my current (relative) good health. I've also had other "true chronic illnesses" for most of my life - asthma, skin problems, etc. They fall into the realm of the previous poster who deals with diabetes - they've become normal for me, consonant with a healthy "me". The MS is different, more profound, more affecting both physically and psychologically.

But here's the rub - the physical and psychological effects don't always go hand in hand. I relate strongly to your descriptions of The Fear, as this is one of the most present and awful effects of MS. What if tomorrow I can't feel 3/4 of my body, as in my first attack? What if next month I can't play chasing games with my son? What if in a decade I'm an embarassment to him, attending a school concert in a wheelchair? That fear strikes deep, to the point where it can be more debilitating than the physical effects. My recent acceptance has been more about a conscious decision to reject capitalised Fear (great in theory, I know) than to do with any physical changes. I also accept that, at times, it will be normal for me to be eaten through by my fear and paralysed psychologically even if not physically. And that's okay too, so long as I don't let it last too long.

I remember, during my first attack (when I didn't yet have a diagnosis but somehow knew what was going on), wishing it was cancer. I thought that cancer was something you fought, and you either won or lost the battle. I preferred that option to a slow decline, a lonely, helpless life and subsequent death, the feeling that I would continue to live but never live a real, adult life. I realise now, particularly having watched a close friend, younger than I, fight cancer twice and "lose" the second time, how naive I was.

This is a long rant, I apologise. I'm not even sure I've made a point, except to say that I believe it relates back to a previous post of yours, where you noted that your cancer did not invalidate another's flu or cold. We have the hand we're dealt, and for many it effing sucks. An old Italian proverb, which I'll no doubt balls up, says something like, "If we could see the cross that the man beside us carries, we would not envy him so." Whether you face something chronic or acute is only important insofar as you give its definition importance. If it helps you sort through these things in your mind, then great. But don't let either definition own you any more than you give that power to The Fear. Acknowledge and move on. It's a great theory that I'm still working on putting into practice. :-)

As a postscript, my own chronic condition(s) don't mirror the line you've sketched. I'd elaborate but I already feel I've overstepped my bounds. Off to drink more red and enjoy my Friday night!

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