Tuesday, May 8, 2012

Thoughts on safety and comfort zones

A friend who is also a new breast cancer survivor and I were talking today about safety and comfort zones. Our conversation was so important, and since my husband and I have also talked about it, I think it's important to put here so others can read it. This, I believe, is The Thing that anyone who hasn't been diagnosed with something potentially fatal cannot grok. They can love us through our journey, but this is what separates our understanding and theirs.

Once you have cancer, there is no comfort zone. Once you've knowingly walked around with tumors in your body, even (as in my case) if they're pre-invasive, you know your own body is attacking you. You can't go "damn, I don't like my job, I'll let Calgon take me away when I get home" because you drag that body, those tumors EVERYWHERE YOU GO. And that knowledge rarely lets you have a moment of peace.

I'm going to put something out that I didn't want to talk about early in my journey, because I thought that some well-meaning person might try to have me committed for it. Not long after my diagnosis, before I knew I had tumors in both breasts, and before I knew that it had been caught before it spread, I walked into my kitchen and I opened the knife cabinet. I stood there and stared at the knives, wondering if I had the nerve to cut out my own tumor. It took a little while for any type of logic to penetrate and even then, said "logic" was only "if the doc can't feel the tumor from the outside, if you know there is no palpable lump, how exactly do you propose to find this thing by yourself?" All I knew was that if I could get to it and cut it out, I could feel safe in my own skin again. That was all I cared about, all I wanted. Of course I didn't do it - I didn't even take a knife out of the cabinet and hold it. But oh, I wanted to. So much. I collapsed on my kitchen floor and sobbed. I felt so alone in that moment, because I didn't even feel safe enough to tell anyone what I'd done, what I wanted to do, and how terrified I was.

Later, after you have chemo, take meds, get your torso rearranged - whatever your treatment is - you still live with the knowledge that your own body has betrayed you this way, and it can do it again no matter what you think or do or say. And even if you don't live in neverending-constantly-thinking-about-it-fear, that fear is always there, buzzing at the back of your mind. And even if you never thought you'd die from YOUR cancer, the reality is that people die from it every day, and there but for the grace of god and all that toddle. 

So a cancer patient has no comfort zone, not really. We have to work harder, strive further, trust more, be stronger, cry more tears, to reach any sort of comfort. But safe? How do we define that now, as survivors?

I welcome your thoughts!

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)!