June 25, 2013

3 Years--Body

Welcome to the 3-year anniversary of my breast cancer diagnosis.  In honor of 3 years, I am writing 3 posts, having to do with what is often considered the 3 parts of the "whole" person--body, mind, and spirit.  It has been 3 years with change being a constant.  I almost said the only constant, but then faces of so many good, good people popped into my head that I realized that was totally inaccurate.  Anyway, there is plenty more to come, with a recap of necessary events sprinkled throughout to get you up to speed.

Let's start with BODY.

How's the ole container doing, anyway?  Well, (and this would be my answer to almost any post-cancer questions,) in some ways great, and in other ways has seen better days.  But, to be clear, there has been no sign of additional cancer, so that is the great.  Shall I go from the top down?

My hair has returned to its former state, down to about my chin now, basically the same (thick, brown, wavy) with a little more grey mixed in.  My skin (face and beyond) still seems to have gotten a little less resilient, but is that just age or is that treatment--I don't know.  I'm guessing chemo and radiation are about equivalent to about 10 years of premature aging.  Not saying I look haggard for my age, just saying that my baseline changed forever.

On down to the upper airway... in the course of all this, I was diagnosed with sleep apnea, so now I have a cpap to wear at night.  The snoring stopped and I rest better, at least, but it's weird.

Then, well, the arms.  Specifically, old righty.  Still struggling with the lymphedema--getting closer to a better baseline with that, but still visible swelling, and I've had 3 rounds of cellulitis in that arm in the last year.  That has been scary.  I am continuing to do my own drainage maintenance, wearing compression gear, wrapping at night, some craniosacral therapy appts.  I am hoping that advances in surgical lymph node transplant come a little farther soon and are offered a little more locally--I'd have to travel to PA to have the surgery currently.  It's chronic condition management, so sometimes I keep up better than others.  It is probably the thing about the post-cancer that makes me feel the least normal and seems the most obvious.  I hate it.  It still makes me angry and resentful sometimes.

And the arm means I will forever have restrictions on the activity I can do and how much I can lift.  Sometimes I push it a little, but I'm trying to behave.  Now that I have to maintain the house, I've had to hire help for things that I will just not be able to manage.  It's a bummer for someone who used to dig holes for a living and likes to do physical things like that...

Then to the chest.  Chests have been a topic of public discussion lately, and I'm still out in the world flatter than a man.  I have worn my breast prostheses twice that I can recall since my surgery.  Ever.  I guess I just never got in the habit of having things back on my chest.  There is a "club" of sorts for us bilat mastectomy with no reconstruction women, Flat & Fabulous.  Many of the members had reconstruction, only to have multiple complications and need to have them reversed, and there is another group of us who never had recon.  For those who don't remember the reasons behind my choice, it would have meant multiple other surgeries and clinic visits, longer recovery with more lifting restrictions (while Olive was still a baby), implants were really the only option, and the odd of them making it through radiation without issues was not great.  And I was reassured at the time by Ben that he wouldn't want fakies, either.  As I hear more from women that did have recon, a straightforward recovery is never a guarantee.

I revisit the decision from time to time for multiple reasons, not the least of which is I'm now single, and it is much different to face the world of dating/relationships with an obvious physical difference.  So far I've been lucky enough to have found acceptance, but I am sure there will be some patches of rejection and self-doubt to come.  Not that anyone else doesn't face rejection in some variety, but you do have to admit that this is a pretty big absence, especially in the world of sexuality.  And I think I will continue to come back to occasionally reassessing the reconstruction question, see what advances are out there, etc.  I still don't think I'd do well with implants at any time. I'd worry about the impact on the lymphedema, and I still have a lot of pain issues and don't think that would help things.  The one intriguing option is autologous fat transplant (lipo your own fat from other "abundant" areas, inject into the breast area after stretching the skin/creating pockets).  But right now, there are very few MDs performing it, so I'd have to travel to Miami multiple times and go through other physical prep.  Maybe further down the road.

So yeah, pain--the other issue in my chest area.  Seems like I was talking about this a year ago, and really no headway.  I've tried a couple of different medications and am due for a pain consult whenever I can get it scheduled.  There have been some recent studies out about the high prevalence of post-mastectomy pain and the fact that it is undertreated--it makes me sad to think of how many women are dealing with it.  It is often complex, a mix of multiple pain types, and it becomes its own nasty feedback cycle that is often called a complex regional pain syndrome.  So we'll see--I, of all people, who teach people about pain all the time, have been undertreating it myself while I know that it actually will make it worse.  There are multiple barriers--the same ones we talk to patients and families about all the time!  Unfortunately, the least of which is not the stigma associated with taking controlled substance pain medication, getting refills, etc.  It's also the reality of trying to increase dosage effectively while dealing with a few days of more side effects--it's hard to miss work right now, and it's especially hard to time it around days that I have Olive time and can't afford to be drowsy, dizzy, etc.  But I'll get there, because it wears on me.  I don't want it to be the norm in my life.

The rest of the bod has been hanging in there.  A lot of the fatigue is gone, and a lot of that has come from a much better regimen of diet and exercise (and I have lost weight and gotten more fit...).  Not that I am strict with any plan, but I am doing enough now to bounce back faster.  My overall tolerance for long days is still probably less than most people, so I can still hit the wall hard.  But I can vividly remember the times when I could barely function during and after treatment, so this is a big improvement.  My biggest downfall lately is that I have become a night owl again and have not been getting enough sleep.  I blame people that like to call me late and that I like to stay up and talk to ;)--there are worse things!

Random stuff--I will never regain the fat that was removed with the surgery, so I will always look like a rib cage.  I am trying to keep my weight down to avoid having a very strange flat top/big belly phenomenon that would look stranger than it may sound...  Mosquitoes like me again, esp my ankles.  You may recall that there was some time after chemo that they did not come and bite me since I must have been emanating some nasty chemicals.  So I guess it's out of my system enough for their taste! Yay?  And it may be time for a new tattoo soon.  If anyone says "pink ribbon", I will seriously put the hurt on you.  For real.

And I send a strange thank you out to my couple of people who have still had me model for them or asked me to model.  Apparently what I lack in boobs, I make up for in legs and hair. I try to take those opportunities and seriously try not to be too self-deprecating, because I really do appreciate that my friends encourage me to flaunt what I've still got.  Sometimes I can get myself feeling kind of cool about it.  I've got a pretty good bubble of self-acceptance and better confidence these days, and that reinforcement at the right times has helped get me there or keep me there.  Oh, maybe I should insert a picture of me and my stems.  Or gams, if you prefer.  I've been joking that I should add "waist-down model" to my resume...

In honor of the other women that have recently fought to show mastectomy pictures on Facebook and normalize things, I was going to post pics of my scars but am hesitating.  Scars, tiny tattoos, a perpetual tan in my radiation area, and ribs, ribs, ribs, but I also haven't had them artfully shot like the Scar Project.

I'll get more into the post-cancer mindset in the MIND post and talk about the recurrence thing, etc.  And many other thoughts.  I know you can hardly wait.

1 comment:

merry said...

Jenny, this is beautiful - as beautiful as you are. You have fought the battle, my friend, and you have won. I know how wonderful I feel knowing that this next month I will be 10 yrs and 6 yrs free of CA, and I didn't go through anything like you did. Keep up your beautiful spirit and determination. What a fantastic role model you are for Olive!!! You R.O.C.K!!