“Don’t mind if I fall apart.
There’s more room in a broken heart.”
— Carly Simon, “Coming Around Again”
This could go down as the most disorganized blog post I’ve written so far. We’ll just have to see. I don’t know where to begin. I don’t even know whether I should try to organize this chronologically by date, or by emotional impact, or by some other organizing principle. I’m not sure I can even figure out what happened when or how to compare the impact of various events.
Whatever. I’ll just jump in.
I used to feel guilty playing the cancer card. I got over it, but I had to have a talk with myself first. I remember the first time this came up for me. It was about three months after I’d been diagnosed. I had just returned to work after being slashed and burned (that’s having surgery and radiation for the uninitiated), and I was exhausted, but happy to reclaim any identify that was not that of being a cancer patient. I was attempting to sort out some bills I hadn’t paid yet. There weren’t many, thank goodness, because I use online banking and have set up auto-pay for most of my bills. And also because I have health insurance, sick time, and was able to collect temporary disability. So, I was not totally broke despite being out of work for a couple of months. As soon as I had a surgery date, I ordered a set of DVD’s online — the collected episodes of “Absolutely Fabulous.” I figured I’d need a good laugh or three while I was recovering. I paid with a credit card, got the boxed set in time to watch them after surgery, and promptly forgot I had to pay my credit card bill. This sort of thing happens all the time when you’re dealing with cancer. It and the treatment of it tend to drive everything else out of your head. I’m sure I’d probably have noticed if the house were burning down back then, but I’m not entirely sure I’d have remembered to put some shoes on as I was rushing outside and calling the fire department on my cell phone.
So, I finally remembered that there was a credit card bill out there, and that I was about 2 or 3 months late in paying it. And there would be late fees involved. So, I sat here, at my desk, the very one I’m sitting at now, and I thought, well, shoot, I feel like an idiot about this, and I hate to play the cancer card and use that as an excuse. But the late charges will be practically more than the balance by now. And I can’t really afford that. But I don’t want to be one of those people that expects special treatment anytime something goes wrong…
And then a light came on in my head, and another voice, one that was emerging from a very tall version of myself who was standing there with her hands on her hips, shaking her head at me and rolling her eyes, said, “Uh, DUH. It’s not an excuse. It’s the damn truth. You DO have cancer, and you HAVE been getting treatment, and you ARE just a teeny bit distracted by that, wouldn’t you say?? Because, uh, oh, I dunno, maybe because it’s a life-threatening disease??” So, I laughed at myself, called the credit card company and told the truth. And the nice lady took all the late charges off my bill, and we transacted a phone payment on the balance, and she told me to take good care of myself and wished me luck.
I don’t feel guilty about playing the cancer card anymore. It’s not really even the cancer card now, but the post-cancer-treatment card that I still have to haul out. And I do get sick and tired of having to, and I get really tired of repeating myself to people who should understand by now. I can’t work full time anymore. I tried, but it was killing me. No one warned me that I would feel so tired for so long. I kept dragging myself home from work, and falling almost immediately into bed each night, and waiting for that to go away. And it didn’t. Finally, I cut my hours in half and began to figure out what cancer-related fatigue really is. All of this took up over a year of my life. Then, over the next several months, I clawed my way back to working 30 hours a week, which is 80% of my full-time hours. And I can just about manage that. I still have the same mortgage payment and car payment, but now I have 20% less money to pay them with. But at least I have a job. And health insurance. It’s not easy though. I don’t have my life back yet. It’s been just over two years now.
The trouble is, most people think that you’re all better once you’ve finished getting slashed, burned and poisoned. And of course, you aren’t. Any for many of us, we never will be “all better.” In fact, we don’t even recognize ourselves anymore. But no one understands this but us, even if they say they do the first or second or fourteenth time we tell them. So, we tell them again, over and over, and say no a lot, and get tired of having to explain ourselves when we know that no one understands the explanation anyway. And no matter what we say, people look at us as though we are just making excuses for ourselves, because we must be doing something wrong if we don’t feel like our old selves by now, for goodness’ sake. I mean, haven’t we tried the accupuncture/t’ai chi/Reiki/green tea/vitamins/yoga/meditation/pilates/massage/reflexology/support group/anti-depressant/caffeine enema/garlic supplement/almond extract/relaxation tape/shiatsu that they told us about? Yeah, sure, and I’ve also got an exact replica of Hermione Granger’s magic wand that I’ve been trying to get to work for me. I think what I really need is her Time-Turner.
I’ve been having cyber-conversations with two of my sistahs about this recently. One of them very eloquently put it this way on her blog: “For the last time, I did NOT fight cancer. You don’t FIGHT cancer…you fight fear…But totally prostrate and helpless IS NOT A FIGHT! It’s a struggle between ID and Isn’t, okay?…NOW is the fight…[but] There was no AFTER IT’s OVER section in my info book.”
Another sistah wrote: “After my diagnosis of Breast Cancer, family, friends, husband were all on-board…[but] Slowly, one by one, people dear to me have disappeared, including my husband….Meanwhile, my life has fallen apart because I am functioning on an extremely low frequency…Cancer is a lonely disease…”
And that’s if you even survive. Last Sunday, I had just finished visiting one patient and stopped by the office to drop something off. Two of my weekend colleagues were there, looking particularly glum. “What’s up?” I asked. And they told me that one of our colleagues went to the doctor four weeks ago with abdominal pain and was now dead. Uterine cancer. Two surgeries. Each time, they found mets somewhere else afterward. Mets, that shorthand for metastases. They found mets everywhere. Forty-five years old with a seventeen-year-old daughter.
When you’ve had cancer, you know it could have been you they were talking about. No matter how many of us survive — and there are more of us every year — cancer is still a sneaky, deadly, unpredictable foe that is capable of having its lethal way with any of us. This is what you live with forever after you’ve grappled with the Beast. This is why we have nightmares over phrases like “recurrence risk.” Of course, I went to Mary Beth’s wake. It broke my heart to meet her beautiful daughter. But I was all right until I met her mother. She was the only one sitting in the long line of family members. “Forgive me,” her mother said when I stood before her, “but I just had to sit down.”
“Of course you did,” I said, immediately squatting down to be at eye level. “You must be exhausted.” As I introduced myself, told her how I knew her daughter, she took both of my hands in hers and looked me straight in the eyes. There was such strength, candor and weariness in her gaze. That’s when I lost it. It was so wrong that so many of us survive, but so many of us don’t. It wasn’t fair that her daughter barely had time to register what was happening to her before she was snatched from her family’s midst. Tears leaked out of my eyes. I managed to choke out, “I’m so sorry,” then couldn’t speak at all for what seemed like a full minute. Her mother’s gaze never left my face. I’d never met this woman before, but we stayed there, silently gripping each other’s hands more tightly, locked in a gaze of profound, soul-bearing knowledge in which words were hardly necessary. Finally, I managed to say what I needed to say to her. “I survived cancer two years ago,” I told her, as tears streamed down my face. “It’s…it’s just…so awful…it’s so unfair,” I choked out and couldn’t speak anymore.
She squeezed my hands one last time and said fiercely, “You stay well, okay?” I nodded yes and left.
Meanwhile, back in cyberspace, my sistahs with hereditary cancer syndrome are raising awareness in this month about ovarian cancer, which uses a teal ribbon as its symbol. And in Congress, while I was getting ready to go to Mary’s wake, breast cancer survivor and hereditary cancer previvor Representative Debbie Wasserman Shultz was announcing the unanimous passage of House Resolution 1522, declaring the last week of September as National Hereditary Breast and Ovarian Cancer Week and the last Wednesday of September as National Previvor Day. The entire month of September is Gynecologic Cancer Awareness Month, which was first declared in 1999 by the Gynecologic Cancer Foundation, in conjunction with the American Hospital Association. Gynecologic cancers include uterine, ovarian and cervical cancers. There is an excellent chart published by the Centers for Disease Control describing the symptoms of these gynecologic cancers. Increased awareness and education on all of these cancers by these organizations and others like F.O.R.C.E. have already saved many of my sistahs. They couldn’t save Mary Beth, but maybe they can help keep another mother from losing her daughter, or another daughter from losing her mom.
And, of course, next month is October, Pink Month, Breast Cancer Awareness Month. It seems I just can’t escape cancer awareness. Every day, there is some reminder in my life of cancer. I hate it. I hate being reminded that my life and the lives of so many others have been irrevocably changed by this disease. But I’m getting used to it. Because I also know it would be far, far worse to forget.
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