Wednesday, May 2, 2012

@rica620 hang in there Rica. We're here for ya and all pulling for you. - @lancearmstrong

I've now been lucky enough to have received 3 Tweets from Lance Armstrong in the past year. The first came the day after my double mastectomy.

That Tweet sent me reeling. I'd Tweeted Lance many times before, as many fans and LIVESTRONG followers do, with no response. This was unsolicited. It was touching and moving to think that I crossed his radar and he chose to speak up. I was flattered. And inspired.

The second was when Alberto Contador & team made some futile attempt to sway those determining whether or not he'd be stripped of his Tour de France title by starting a school in Israel. All of a sudden, he developed a keen interest in Israeli-Palestinian politics - coincidentally while he was being judged by an Israeli. I tweeted, "@velonews @lancearmstrong  What's your take on Contador's & Saxo Bank's 'project' in Israel this week?" Lance's response?
I will go on record that I consider this exchange an official acceptance of my invitation to give Lance Armstrong a personal tour of Israel as his tour guide. We now, obviously, have a strong personal relationship. (Ok, well, maybe not a strong, personal relationship, but at the very least, I'm a repeat Tweet offender.) After all, I met him at Gracie Mansion, only a month later, I was having dinner at his house in Austin. (Ok, well, me and, like 300 other people during the Ride for the Roses festivities during the LIVESTRONG Challenge.)

But his last Tweet to me (and the title of this blog entry) this week meant a lot. And, to me, it is a big reminder of why LIVESTRONG is just such an important organization.

You may have noticed that my blog has slowed to a trickle. Yes, I've been busy, that's a big part of it. Between appointments, trying to get back into the swing of a regular schedule, and all the LIVESTRONG events I've been putting together, finding time to write is challenging.

 But there's a bit of a confession I should make.

My surgery to replace my expander implants with the silicone implants took place 3 months ago. I was excited. The way it seemed, I'd have the nipple reconstruction by end of March, early April, I'd be back on my bike, and progressing rapidly towards recovery. Normalcy. Putting the whole active cancer "thing" behind me and moving forward. Of course, I could never leave behind the journey I took, but I saw the hardest part of the journey as being almost behind me.

I've spoken before about cancer's sick sense of humor. Even when you have "No Evidence of Disease," medically, the damage it causes with primary, secondary and tertiary treatments never seem to go away. I am the evidence of disease.

Take my fingernails, for example. My significantly altered hyponychium (quick), with the whites of the nail drifting closer and closer to my cuticle, is just one reminder of this. Every time my still-brittle nails break in an awkward or dumb way, and I can file my nail down much farther after than I ever thought I could, I'm reminded of the chemotherapy. Every time I simply try to clean under my nails when I give myself a manicure, and the skin attaching my nail to my finger flakes and separates in odd ways, I know it's a result of the chemotherapy. Which is because of the cancer.

That's a small thing, I know. But it's constant. As is the fact that here I am, 3 months later, and the nipple reconstruction is still weeks away. Why? Because my left breast isn't healing properly. In a sick twist of déjà vu, my left breast is not healing right. It is swollen, not quite as badly as before, and not quite as pink, but still bad enough that my doctor doesn't want me to exercise, still. I mean, it's only been since October that I've been back on the bike. That's not so bad, right? (Tell my ever-expanding waistline and rear end that.) How to put this delicately? Um... the wound was still seeping along the incision from the last surgery in a couple of spots. No matter what I did, nothing was making it heal faster. Sadly, my surgeon was out sick for a long time, so I couldn't see him until recently.

So, for the past few weeks, I've stuck in this stupid limbo. And I couldn't get any closer to putting cancer behind me. There really wasn't much to report. Had I kept up my blog, it like would have read along the lines of, "Got the kids out the door for school. Went to my loft, logged in for work, went down into my room to change, put on yoga pants and a t-shirt, as they are the only things that fit. Too lazy to make coffee, so I drowsily got my work done. Kids came home, started their homework, kept working, made dinner, slinked back to bed." Wash, rinse and repeat, with a few aberrations. I didn't think it was noteworthy.

Nor did I think it was something a LIVESTRONG Leader should admit publicly. There's a tremendous guilt when you put yourself forward as a leader in an organization like LIVESTRONG, and that strong face you put forward is concealing something very different. You feel like a hypocrite. Like a failure to the organization and the people you address.

Then, when things were getting really depressing, I saw my doctor who decided I needed to get a sonogram on the left breast and I was put on the same antibiotics I was put on right before I went into the hospital with the infection. I was terrified that I'd have the same thing happen again. That I'd have to go into the hospital, that the implant would have to be removed and replaced again, that I wouldn't heal any faster, or worse, the reconstruction wasn't working and I wouldn't be able to have reconstruction at all.

The terribly clear sonogram. Top slides present day, bottom slides,
from before. This is a good or a bad thing? Who the hell knows.
So, yet again, I found myself at the Tully Center having another sonogram on the left side. I had to explain to the technician that this wasn't my first time I was at the rodeo, no, we aren't looking for cancer, we're looking to find a reason for the swelling and to rule out a seroma or infection.

My left breast was tender and painful enough that even just the gentle pressure of the sonogram's transducer on my side and along certain areas was enough to make me flinch and wince. It shouldn't be that painful anymore. I sat there, looking at the screen, seeing the vast black half of the screen where breast tissue used to be and is now occupied by silicone and foreign matter that the sonogram no longer considers a part of me, seeing nominal lumps of mystery along the horizon. There was, once again, a reminder that there isn't a honeycomb of breast appearing on the screens. It was dead, alien crap filling that void, now.

The depression grew as, after the technician was done and went to consult with the radiologist, I attempted to wipe off the gel from my breast, but struggled as gobs of it had fallen into the valley of the 4-inch incision across my breast where a nipple used to be. It hurt when the towel brushed against the top half of my breast, where the nerve endings were still trying to figure out what the hell was going on, and only sent a half-burning half-itching sensation to my brain. Finally, I gave up. Who cares if the crap was still on my breast? No one was going to see it, touch it. I didn't feel it the way I did before. It didn't matter. It wasn't a part of me anymore. It wasn't something I was proud of, nor did I see it as beautiful or attractive. So what's a little dried up goo?

The technician came in and said that there were signs of necrosis, but nothing to worry about. Nothing to worry about? Necrosis isn't something to worry about? Necrosis is the premature death in living tissue. Nothing to worry about? She further explained that the necrosis wasn't as bad as what they saw in November, the last time I was there. I asked if it was normal to see necrosis like this. She said it was as normal as could be expected.

What did she mean by that? How should any of this be expected?

I came home feeling defeated. The week before, a night that was supposed to be wonderful and romantic, etc ended up a disaster because my patience was shot, as well as my self-esteem, and I couldn't at all enjoy the evening because I hated the way that I felt and looked. I'd been looking forward to this getaway for months, and anticipated it to be a wonderful time. Instead, I left the evening angry, disgusted, disappointed and sad. Then, I was back in the very place that detected my cancer, and the previous infections, seeing images on a screen that just got more depressing every time I walked into the facility.

Now, my left breast has dying tissue, it's painful, but it's not enough of a concern to admit me, but enough of a concern to continue to ground me, delay reconstructive surgery several weeks, and leaving me in this god-damned limbo. I went to change out of the clothing that I see as presentable to wear outside the house and into my torn up, stained yoga pants, soft t-shirt and sweatshirt. As I got out of one set of clothing, I looked down at the body that I no longer saw as mine, that disgusts me, and, as soon as it was covered up with volumes of fabric, I got into bed and cried.

I still had the ROCK the RIDE & RUN to finish prepping for on Sunday. In the back of my mind, I kept telling myself, "Who the hell do you think you are to represent LIVESTRONG when you don't even know how to do that yourself? What does LIVESTRONG mean anymore, anyway?" The guilt that I was even asking myself those questions made me even more depressed.

But, I'd made a commitment, and I don't back down from my commitments. So, I got ready for the weekend. Saturday was the Sustainability Fair at John Jay High School - not only a last chance to recruit runners, riders and walkers for Sunday, but also to talk about how LIVESTRONG sees their commitment to sustainability as a means to make the world better for cancer survivors as demonstrated by our Headquarters - and Sunday was the ROCK the RIDE & RUN.

Instead of making more flyers for the Sustainability Fair, which is not exactly the most "green" option, I decided to put together a PowerPoint presentation with information about LIVESTRONG's headquarters, features of the building that promoted green living, etc. While gathering information, photos and slides for the presentation, I decided to include the Manifesto at the tail end to remind people of what LIVESTRONG was all about. It was about 4:40am, and I was alone on the sofa.

I was running the slideshow, making sure the automation and loop worked, going into the other room to get our stuff ready to load into the car, and then I heard the intro to the Manifesto. I heard Lance's voice speaking, with authority, about all that LIVESTRONG believed in. I walked into the room and saw my friend, Ashleigh Moore, on the screen. I sat back down on the sofa, fixated on the screen. And then I wept.

"That's right," I thought. "That's right."

So, I Tweeted Lance. At 5:16am EST. I knew it was too early for him to read anything. But, in my hazy, insomniac thinking, I felt that I needed to thank him, and LIVESTRONG.
And then I got my third Tweet from Lance.
Now, of course, in 20/20 hindsight, I realize that my Tweet may have made it seem that I had just had chemo they day before or something, so I was going to post a clarification Tweet saying, "Just so you know, it's been a LONG TIME post-chemo, so forgive me for intruding." And, then I stopped myself.

The cancer experience doesn't end with the last chemo treatment. The pain, stress and struggle doesn't stop when they remove your port, or stop radiation. It can linger for years or days. It can be absent from your life until months, even years later.

But, unlike most other organizations who cease all support and care for you when the chemotherapy & radiation stops, that's where LIVESTRONG picks up. Yes, LIVESTRONG does a tremendous amount during what most consider as "active treatment," but, like no other organization, LIVESTRONG doesn't drop you as soon as "active treatment" ends. They still care. They still do.

And I shouldn't feel guilty, as a LIVESTRONG Leader, for feeling weak, being depressed, etc. Just because I'm a bit more tapped into the innerworkings of LIVESTRONG doesn't make me immune to cancer and the struggle it presents. (Hell, if that were the case, I wouldn't have gotten cancer in the first place, right?) Do I get special treatment or support because I'm a LIVESTRONG Leader? I don't think so. I mean, yes, I got to attend the LIVESTRONG Assembly, just as a Mary Kay Consultant, I can attend Seminar. So, in that sense, I was treated just as any other LIVESTRONG Leader would have been. And, yes, I have a more personal, direct relationship with some of the amazing folks at LIVESTRONG, so I have a more direct line to them. I don't get to "skip the line" as a LIVESTRONG Leader fighting cancer.

But as a cancer fighter, I need & get the same support that anyone else does. Lance needed it when he was going through treatment, as he reminded us in Austin in March. Cancer is status & title blind. As such, the need for support during and after treatment is still present.

Lance & every single one of you at LIVESTRONG, the partner programs, and fellow Leaders that are pulling for me and have given your support, if I don't say it enough, I'll say it again: Thank you. I try and do my best to make you proud, to represent, to raise awareness and funds, and be a good leader. But you also remind me it's ok to just be me, take some time and take care of myself with you by my side.

Thank you.

The LIVESTRONG Manifesto.
Worth the watch.