Nov 14 2010

Cancer Chronicles: Realistic Recovery Rates

One of the things I did after surviving surgery was research recovery rates for breast cancer surgery and the common convalescence recommendations. (I didn’t do much of that beforehand; there wasn’t any energy to spare and it wouldn’t have been relevant had I not survived.) I most vividly recall my reactions to this as getting angry at what I found, on a few different levels; it got bad enough that my therapist suggested that I really didn’t have to go look at those sites if they were that infuriating. (I did indeed take a couple of months’ break on that research front; by the time I came back to it I was in a much calmer place emotionally.)

I thought it might be interesting to show with representative examples part of why I’d been getting so irked. So as follows, I present summaries of the two common categories of post-surgery recommendations found in research, followed by an overview of my actual recovery process. Please note that not everyone recovering from breast surgery will have my experience: I was in a much more extreme place physically than most people are when they go into surgery, and thus my body had more to repair and heal from. On the other hand, I have tried to keep that fact in mind in writing this, and have generalized wherever possible to wider relevance.

The doctors-funded-by-insurance recovery advice
This is of course my own category label; no site I found was so crass as to actually admit the influence of insurance motivations in their recommendations. However, points like

  • You’ll need painkillers for the first few days
  • “Most people” are ready to return to work in 2-3 weeks
  • You’ll have limited range of motion for the first 4-6 weeks
  • There are several support groups for emotional distress
  • Get a note from your doctor if you have movement restrictions

all seem to me to be heavily influenced by unseen insurance timetables of what is “optimal” — not for healing but for their profit margin. It was evident in my first week of healing that these suggestions were way off target for anyone but perhaps those receiving a small lumpectomy. (Since I researched mastectomy, not lumpectomy, this seemed more suspicious advice yet.)

Less infuriating on the medical front, but still maddening, was the other main category of advice:

The more-medically-realistic-but-emotionally-damaging recovery advice
There were several sites (a few written by medical folk but more written by survivors) that had a more physically realistic estimation of recovery rates, mentioning points such as

  • 4-6 weeks before full job duties can resume
  • pain will be consistent for the first several days, slowly tapering off
  • You’ll have limited range of motion for the first 4-6 months
  • Nerve regeneration will be happening throughout the next 6-18 months
  • Restrictions on lifting weight and such might be permanent due to lymphedema risks

and as far as all that goes in accuracy, I have much less to complain about. These sites however, for all they were closer to the mark on the physical estimations, had a screamingly heavy dose of this next part (at least one site used the literal phrasing I use here, though most weren’t quite so rude in phrasing the message):

  • You will need to join a support group to cope with your new deformed shape.

(insert gibbering rage here)
In this breast-obsessed culture, it is hard enough not to integrate messages of physical ugliness after an experience like mastectomy. Even if you are fortunate enough to escape the comments from family and friends and spouses like “I’m sure people still find you attractive (sympathy-dripping tone)” or “So, when are you getting the reconstruction?”, you’re still hit with the objectifying breast cancer campaigns like “save the ta-tas” that imply to your hindbrain that your breasts — and not, oh say, your life — are the focus of disease-fighting efforts.

Now before people get tetchy, I’ll re-emphasize that I’m not inherently against fundraising drives for breast cancer, or breast reconstruction for those who feel they need it. What I abhor is the implication that reconstruction (or a prosthesis) is a required step in the recovery process. This is not discouraged by the medical establishment, by the way. I had at least three professionals tell me that the breastform was necessary for “body balance”, with one going so far as to tell me that the breastform would help massage the lymph fluid away from the area. While this may be true for some, those of you who have seen me or seen recent pictures know that they left me plenty enough for balance and weight distribution, thanks to the ample tracts of land I sported before. I got the strong sense during research that the consistent messages towards reconstruction and prosthetics were for the benefit of those who had to look at me, and not necessarily for my own benefit.

But back to my supposed emotional distress over my new deformed shape. Not everyone has the privilege of therapy to assist them through the recovery process, though I highly recommend it for anyone who can afford it or has the insurance for it. You as a cancer survivor will be dealing with life-impacting things, some of which even those closest to you during the battle will not have to deal with as directly, or for as long a duration. I think support groups can provide a therapeutic influence, especially for those who can’t afford more formal psychotherapy. However, enough personal therapy as well as observation and much related reading over many years — not to mention uncommon sense — tells me right up front that the “don’t think of a pink elephant” meme is in strong play here. For those few patients who somehow manage to escape crappy post-surgery messages from their social circle or their larger community, these “help” sites ensure that if you hadn’t been thinking of yourself as mutilated, deformed, and socially unacceptable before, you’re surely thinking of it after reading ten sites that spend more than half of their bandwidth soothing your new pariah nerves.

I found exactly. one. site. in my searches where someone (a survivor) talked about their intent post-surgery to not go the prosthetic or reconstructive surgery route. They also blogged about changing their mind after repeated questions and pressure about reconstruction from friends and family and doctors and society. No other site I found presents longer-term recovery and maintenance options on anything other than wearing a breastform or reconstructive surgery.

It is quite emotionally impactual to go through this experience. I am blessed with a plethora of amazing family and friends and social circles who are wonderfully accepting of my new shape. This helps immeasurably in combating the messages received from the rest of the wider world that I am now supposed to become one of the social invisibles, calling as little attention to myself as possible and never expecting anyone to find me attractive again (unless I follow the reconstruction script, of course). And still fighting those perceptual demons internally takes time, and my journeying through some unpleasant emotional places. Making my job harder by priming my mind with messages of non-acceptance, emotional shame, and presumed ostracism really doesn’t help that recovery rate.

I shall now attempt a summary of what I consider a much more believable rate of recovery for mastectomy (based on my own experiences, of course).

* Even if your job is mostly sitting around on your butt all day, you are highly unlikely to be any sort of usefully functional at work before the first 3-4 weeks are up. I didn’t start writing again until about a month after surgery and it was very on-and-off for several weeks after that. Almost-dying requires an insane amount of rest and sleep afterward for full recovery. I suspect even major chest surgery without the nearly-dying part will still take longer than 2 weeks of recovery time. And if you have a labor-intensive job…see if there’s any possible way you can be on reduced body-impact duties for the first couple of months back at work. You can do your chances of long-term full healing serious damage by doing too much too soon after surgery like this.

* My cancer was hugely painful, so I was on high painkiller dosages both before and for 3 months after surgery, though I began tapering my doses down as much as I could almost immediately. For the last several months, I’ve been at lower and lower doses until the last 2-3 months, where my pain has been small enough most days to take none at all or an occasional quarter-dose as needed. It is highly likely, thanks to insurance companies and the medical industry’s stupid attitudes about pain medication, that you will not receive the level of cooperation needed from your doctors in providing you adequate dosage for long enough to be optimal for your body’s recovery. (Constant physical pain slows down your body’s ability to heal.) I might expand this point further in a later post, as there is definitely more I could talk about here.

* On the limited range of motion front — This will last far longer than you would like, especially if you have anywhere near the body awareness levels I’ve developed throughout this and other experiences. I think most of the recovery tables are based on the abilities of an “Average American”, who as we all know is fairly sedentary and has not the healthiest of lifestyles. Sure, you’ll get back to some measure of stumbling-through-life mobility within the first 3-6 weeks, but not what your body is actually capable of in potential. If you’re going to get that part back at all, you have to work hard at it. This is not an area to slack the way you might have in your pre-cancer life. Eat healthier; do the stretching and physical therapy exercises they prescribe you even when you’d really rather not; push your body — gently — to its daily limits in moving and give it rest, rest, rest in-between. Strength and range-of-motion should be mostly back after about 4-6 months, if you’re working at it, but stamina takes far longer to rebuild.

* The nerve regeneration taking much longer I have so far found to be completely true. I still have areas of incomplete innervation. In yoga I’ll still have acute stabs of localized chest and ribcage pain as the movement pulls on internal scar tissue. I still have weird nerve reconnection sensations; for example, a small pimple on my ur-boob is not only close enough to a newly-awakened nerve to be far more painful than usual, but I can feel it as if it’s in two different places on that side of my chest, about an inch apart from each other. There’s a place I can press on the front of my chest near my left armpit that I can feel as deep pressure both there and in a mirror spot on my back, next to my shoulderblade. Regular massage of the affected areas will help your nerves wake back up, and don’t forget to research foods you can eat that will encourage nerve regeneration.

* Lymphedema risk doesn’t really ever go away, as it can show up months or years after the initial surgery. On the other hand, it affects only about 10%-20% (depending on which source you consult) of chest surgery folk, so you have to weigh your risks against your daily body needs. Many recommend a lifetime restriction of lifting no more than 30 pounds and avoiding prolonged compression to the arms and chest. If you were previously an active person (and I was, and still am, really), making this adjustment can be quite difficult indeed.

* You aren’t deformed, or less of a woman. You are a bad-ass survivor. This can also be expanded in a future post if people are interested in more.

Questions and comments are welcome and encouraged!

8 Responses to “Cancer Chronicles: Realistic Recovery Rates”

  1. Cheryl McLayon 14 Nov 2010 at 11:00 am

    Very helpful!! I have had several body-altering surgeries in my life, and, perhaps, fortunately, I was young enough not to have any knowledge of how I was “supposed” to feel, what I was “supposed” to do. That allowed me at an early age to realize that every single person experiences such things differently. Unfortunately, that would not be how the people who write about “Your Expectations after Surgery” think. I also broke most of the rules that they did give me after more recent surgeries, choosing to follow my body’s lead and doing what felt right for me. In many cases, I healed quicker than I was “supposed” to, not having those limits placed on me. I would think that post-surgical information could be more realistic and positive, but I see from your post that that is not happening.

    I’m glad you are doing well. Perhaps the best thing we could do for people (perhaps as children) would be to teach them better body-awareness. Teach them to pay attention to how they feel, notice when something is off, listen to their body’s messages. Then, in the case where they might ever have to recover from surgery or serious illness, they would be better prepared to follow their body’s lead, rather than some stupid instructions from people with questionable motives!

  2. Hollyon 14 Nov 2010 at 11:20 am

    Bad-ass survivor - yas! Reesa, you are the most beautiful woman I know. And I know Nate agrees. And you know what? Being small up top has a million advantages (take it from someone who knows):

    Fitting into any shirt and not having it squeeze
    Not having anything getting in the way of power tools or ladders
    Less strain on the back
    Better posture
    And if you want to take up golf, nothing to get in the way of your swing

    The only thing you can’t do very well is spill over the top of a bodice, but who wants to wear the damn thing anyway!! You can wear those cute little Indian cholis instead.

    Celebrate your freedom!

    love, Holly

  3. Brytnion 14 Nov 2010 at 11:28 am

    “you’re still hit with the objectifying breast cancer campaigns like “save the ta-tas” that imply to your hindbrain that your breasts — and not, oh say, your life — are the focus of disease-fighting efforts.”

    biggest.fucking.reason. for why i want to punch breast cancer awareness month in the face. i’m absolutely appalled that a campaign for funding research to stop one of the deadliest killers in the US is made out to be a project that ensures we keep the number of intact breasts to a maximum. it degrades the hard-fought battles and incredible bravery and strength of women like you.

  4. Reesaon 14 Nov 2010 at 4:04 pm

    @Cheryl — I think that’s an excellent solution, teaching it early and often. My increased body awareness has absolutely helped guide my recovery as well as helping me to ignore obvious bad advice. Post-cancer, it helps soothe paranoia when something comes too close to feeling like the bad times before or when a memory evokes the ghost sensation of tumor, as I can parse out subtle variations between them and my current reality that wouldn’t be easily sensed or understood if I wasn’t paying as close attention.

    In many ways it feels like I healed faster than I was “supposed” to, given how far over the edge of the drain I started at. In other ways it feels like I’m either healing slower, or the rest of the world isn’t paying attention to how bad off they generally are. The span between my former capabilities and where I’ll end up on the other side of recovery is a scary unknown, still. Realistically I try to expect that I won’t get back to my “two persons’ worth of daily energy” former norm. On the other hand, I’m also far healthier than I ever was before, so it’s fun to wonder how much that will ultimately matter. All of that while still just taking each day as it comes, and trying to notice the gradual improvement over time, rather than worrying about where I’ll end up.

    I’ve had at least one friend recommend that I be a part of the solution by creating a site with just the sort of information I found lacking in my own research, to help others walking that path. At my current energy levels and with all my other commitments, that sounds like an exhausting idea. But it’s also a good one, so I keep it in mind in case I do get some of that surplus back…

  5. Reesaon 14 Nov 2010 at 4:19 pm

    @ Holly — Even with just the one smaller breast so far that was one of the early things I noticed. “Wow, I can move my arm all the way across my chest without it getting in the way!” and other such observations. Going over bumps, only one side jiggles uncomfortably now — the smaller side is held close enough to the body it’s just fine. My bra strap only leaves angry red shoulder marks on the right side now, the left just isn’t that heavy. Having had large breasts my whole life, I find that since I have to anyway I am actually looking forward to both sides being smaller. I think that getting to experience both sides of it, I’m putting my vote in on the small boob side of the equation. So much more comfortable!

    @ Brytni — It would never sell, but “Punch Breast Cancer Awareness Month In the Face” would still look great as a t-shirt slogan. I’d be just as mad about a similar marketing slant for testicular awareness, but it would be a briefly amusing change of pace: “Save the Nutsack!” “Keep Your Nards Healthy!” “Check your cojones monthly!” They could pass around cream-colored ribbons. Spunk-hued shopping bags. Gosh, I wonder why it hasn’t happened yet?

    It’s habits of perception like that that help me decide whether something is as hideously offensive as it sounds. If it sounds just as bad a line when substituting a male-based disease, then why is it somehow ok when it’s about a female?

  6. Brytnion 15 Nov 2010 at 10:28 am

    “If it sounds just as bad a line when substituting a male [blank], then why is it somehow ok when it’s about a female?” This is a question that should be asked more often in many more contexts.

  7. Allysonon 16 Nov 2010 at 4:40 pm

    Something occurred to me this morning. Looking at these realistic recovery rates - how on earth do people live through chemo AT ALL after surgery? I know that with most of my relatives, there has been some recovery period between surgery and chemo - but holy cow. Given your observations, I really don’t understand how anyone comes out of chemo alive. I can only imagine the sheer force of will that must be required for a healing body to endure that extra hell.

  8. Reesaon 16 Nov 2010 at 4:51 pm

    @Allyson — It was certainly one of the most daunting of the possible health options after surgery. I’m glad I didn’t have to jump right into that, even the 8-12 weeks between surgery and chemo as they recommend didn’t seem nearly long enough, living through that time.

    Also, from reading Jay Lake’s account and a couple of others, it sounds like chemo does a lot of the same things the pre-surgery illness did — drain life energy, wipe the color out of the world, make it impossible to maintain any semblance of normal life, make it extremely uncomfortable to live in a formerly-familiar body… and volunteering for misery like that STILL feels like too soon, even eight months post-surgery. My body craves so much the urge to feel healthy, it seems like its own kind of failure to deliberately make it sick again under the guise of “saving it — maybe”.

    I am glad the chemo option exists for those who need it. I desperately wish we could come up with better, more body-easy options for cancer fighting faster than we are!