Thursday, May 3, 2012

12-week update

Two weeks from today I'm scheduled for revision surgery. Things are uneven, I would like a nipple on the left, and there's a couple areas that have healed oddly. I'm told it'll be about an hour and a half. So really, in the grand scheme and compared to what I've already been through it's nothing, right? And yet, like a PTSD patient, I'm starting to get more nervous by the day. Feels like I could be building up to a huge freak-the-hell-out episode.

Let me back up - it's been more than two months since I last posted. I always have grand intentions - I start out like gangbusters, then fizzle. Happens every time.

Physically, I've healed incredibly well. I've gone from my mom walking me once around the cul-de-sac before I was worn out to going for 2.5 mile, very hilly walks with my son. I can sleep in whatever position I want. I can lift, twist, move however I want. I can cook, knit, clean... in essence, I can do just about anything now that I could before surgery.

But there are things that are different. Some are transient, and others I'll have to get used to, because if they change, it probably won't be much. Many of them are things I wish I knew before. Not because I would have changed my treatment plan, but because I would have felt more mentally prepared. Here's a partial list of things I wish had been in my pre-op booklet, or things I wish the docs had told me could, or would, happen:

Arm pain. When I woke up, and for weeks afterward, my arms hurt. It took more than two months for me to regain full range of motion in both arms, and it was a very painful process. And once I'd gotten to that point and thought it was all over, I started to develop painful cords in both underarms near my sentinel node biopsy scars; this is a complication many women develop after a mastectomy, and no doctor seems to discuss beforehand. I had no idea what was going on - it's a condition called Axillary Web Syndrome. Andy has helped me stretch, massage, and use the EMS unit, and it's almost gone. But it was extremely painful (and nowhere near the severity of the pictures at the above link), and it would have helped tremendously to know ahead of time what it was, and what to do about it.

What areas I might not have feeling. Yes, I knew - in theory - that I wouldn't be able to feel the foobs (fake boobs, or in lefty's case, frankenboob), but theory and practice differ by miles and miles. From top to bottom, a rundown: at the beginning, in the shower, I could only feel one of the shower jets, one very small one, below my right collarbone. And that small area was so hypersensitive as to be nearly excruciating. Now I can feel the whole shower, but I don't love it. On the right, same area, there is almost no fat padding (something that will be fixed during revision), and I can feel my top rib. It almost always hurts, and I can barely stand to be touched there. The hypersensitivity has decreased - until recently it hurt to even wear a necklace - and the constant pain in my sternum has decreased as well. No feeling in the foobs at all, except near the bottom, but if I go braless for any length of time, I feel as if I'm wearing a tight harness across my chest. It's very uncomfortable, and while my doctor said there's no reason for me to need a bra 24/7 anymore, I absolutely cannot stand to be without one. No feeling in the bottom half of my armpits, near and including the sentinel node biopsy scars (I had to relearn how to shave my armpits!). No feeling around my bellybutton (which I discovered to my horror is not my original one, but a newly reconstructed one. I can't tell you how completely weird that is!) for about 4" on either side, and 2-3" above and below. Feeling is intermittent along the abdominal scar, which goes hip to hip. The very ends of it are very sensitive, which makes clothing difficult. 12 weeks out and I can still barely tolerate button/zip pants, and most of what I wore before surgery still doesn't fit correctly, despite the huge amount of abdominal fat/skin taken, and the amount of swelling that's gone down. I really expected to go down two pants sizes immediately, and it hasn't happened - yes, my lower abdomen is completely flat, but my middle abdomen/waist are not. It's really strange. I think that may change during revision, though, as there will be fat liposuctioned out to graft into the area on the left that needs padding to match the right.

This one isn't realistic, I know. But I wish I could have been better prepared for how I would feel. I want to be grateful that, as close to "cured" as a breast cancer patient ever is (they call it NED: No Evidence of Disease), that's where I am. I want to be happy, joyous, thrilled to be alive and not need chemo, radiation, or Tamoxifen. Instead, I am sad. I don't like looking in the mirror and seeing my Frankensteinian body. At my first Relay for Life event, I cried through the Luminaria ceremony and told a friend "I don't want to be here in the purple shirt." Wisely, she replied "it's better than being a balloon." (Balloons were released to honor those we've lost to cancer.) I am getting better; I have finally taken off my "CANCER CAN SUCK IT" bracelet, and am not feeling the need to go back to wearing it 24/7. My doctors, therapist, and amazing spouse all think that I'm going to feel so much better after revision surgery, as I'll have two nipples, be much closer to natural asymmetry (because nobody has perfectly symmetric breasts), will be that much closer to done with constant procedures, and will finally be able to shop for proper bras and pants once I'm healed. I hope they're right!

Please don't mistake me: I am happy to be alive, and grateful that I don't need further treatment. But I'm only a little more than 6 months out from my diagnosis, and I'm told that it can take a very long time to assimilate it all. To really understand that I am now a cancer survivor, with all that entails - which is a lot! Those who've never had a doctor look them in the eye and tell them they have cancer cannot grok this (nor do I want them to!). It is nearly impossible to convey the feeling of being utterly procedured-out, to burst into tears at the mere thought of yet another needle, test, doctor visit (much less surgery), and the constant underlying fear that one of those tests will reveal that IT'S BACK. A survivor at Relay told me that it eases as each year passes until by the magic 5 year mark, one can almost feel "normal" again. On one hand, that validation is amazing, but on the other, I don't want to have that constant buzzing going on in the back of my mind.

At the same time, there is joy. My relationships have grown closer - my husband, son and I are an even tighter unit than before, something I wouldn't have imagined possible. I've learned to trust my friends, to open up to them about my feelings, to stop having such a strong "public face" that nobody realizes what's really going on. I have the relationship with my mom that I always wished I would. I've also learned to take much better care of myself. I no longer spend hours doing things that make me miserable, and I no longer resent things that drove me crazy before - necessary things that I spent far too much energy hating. These things, I would not trade for the world.

I have no idea what I want to do with myself, but I do feel creative energy building back up, which is such a blessing, because I've missed it tremendously. I cleaned my studio and made workspace available, and I'm amassing lots of ideas. I'm knitting again (I lost my knitting mojo for awhile after surgery), and that helps keep me sane. I'm also exercising and eating better, which makes me feel proactive about my health. Plus I'm learning about the politics of breast cancer, and trying to help educate others. One day I hope to become a volunteer for the American Cancer Society's Reach to Recovery. I also hope to blog more regularly (we'll see how that goes)!


wintermoon said...

I feel like everything I could possibly say or do would be inadequate and might even seem hollow because I can't grok what you've been through.

Regardless, I'm going to try anyway: I'm sending you so much love and hugs, and tons of mojo for your next surgery, and a reminder that I'm always here, thinking of you and loving you and willing to chat or listen no matter what kind of company you might need at the time.

Anonymous said...

I am sk1dder on ravelry and just read your blog. You vocalized all the things that I have felt during my own cancer journey. It's tough. Yes we are glad to be alive and seemingly healthy but boy I sure could have lived without this experience. Yes it makes us stronger but it brings a depth to the words sadness that I never knew before. I am 2.5 years out now and yes it does get better but I have a feeling that life will always be different.

Melissa said...

Thanks to both of you. Cindy, your love and support, even if we aren't talking all the time, mean the world to me. Always.

sk1dder, thank you for the validation - hearing from other cancer patients and survivors is often what keeps me going. And you're right, life will always be different. We call it "finding the new normal."

Kristen L. said...

what's grok?

Melissa said...

Kristen, "grok" is from Robert Heinlein's "Stranger in a Strange Land" - it's hard to explain unless you've read the book. The best I can define it is "to fully understand something at a soul level."

Liz said...

Hi Melissa - I've really enjoyed finding your blog tonight. It's way too late for me to be up, so for now I'll just thank you for the word 'foobs' (which I intend to use regularly). Back soon!!