Something that is little talked about in cancer care is the fears that come afterwards. I think that I am a very sensible person. I expected to celebrate when I was finished with treatment, and don't get me wrong, I was glad to be finished with treatment. I was walked out the door to 'Pomp and Circumstance', and, really, it was funny. I laughed as hard as they did. But then, they went back to work, and I stood there, waiting to feel jubilant. It didn't happen. It never did happen.
This phase is the 'watching and waiting'. Every ache, every pain, I find myself wondering. And the fact is there is plenty of pain to wonder about. It is usually not overwhelming pain, but there are joint aches galore, and the breast itself is subject to odd twinges of pain. I read on someone's blog once that she was much reassured to hear that these twinges of pain were normal, that if cancer was to return, it would not be twinges, it would return with grand scale pain. That was reassuring to me. I can't describe my pain as grand scale, although the winter cold made my joint pain a lot more difficult to deal with. Anyways, so I've been plodding through these days, trying to be a brave little soldier. And then came the pain in my hip. For the first time, I was dealing with pain on a grand scale. Walking into the cancer center is always a sobering thing for me, especially now that I am not in there multiple times every week. I have the long stretches of time where I do not go back at all, and then I find myself walking across the parking lot to the building and I am just filled with...what? Not dread, exactly, but I just don't want to be there, I don't want to walk in there. This time, I was going in there with grand scale pain. I hate the routine. Every appointment begins with 20 questions. Among them: Are you tired? (Yes) How tired? (rate the exhaustion) Do you have pain? (Each time I answer yes.) How much pain (rate the pain). And they go through the list of questions and I give my answers, and I begin to feel the niggles of concern inside. 'What does this mean?' And then it is simply never addressed. I feel like a hypochondriac or a weak complaining woman if I carry it on. I realize that this is something that I have to get over.
My last visit to the cancer center had me meeting the young mother with metastic breast cancer, and it was as if all those niggling fears I had suddenly became 'illustrated'. I had a picture, a powerful, powerful picture to go with my niggling fears, the ones that I try not to think about, (and have been carefully trying not to think about for months now). It was shocking and it was galvanizing. I cannot get her face out of my mind. She said something that stuck with me. "They don't like me here. I'm sure of it. I have questions. I asked about having part of my liver removed, and I was told that I shouldn't even be thinking about such things. Why not?!!!" she demanded. "I have every right to think of these things!" She sees a doctor in Pittsburgh. That doctor oversees her treatment, which she takes at our cancer care center. She said to me, "I don't think that this cancer center is equipped to deal with young people who have cancer. I don't think they are able to deal with people who want to fight. This is where people come if they are old. They are going to give standard treatment a try. If it works, good. If not, well, they are ready to opt out of more aggressive treatment." I looked around the waiting room and I saw all the faces of the elderly people. Her words have really struck home with me.
I've been thinking a lot. When I saw the doctor from Philadelphia, the one that was filling in, she was like a breath of fresh air. She talked openly about all sorts of things. I've asked right along what a normal tumor marker is. I've been told that it varies. This doctor, without prompting, in talking about tumor markers, simply said, that a normal tumor marker is considered to be 37. So yes. Mine are above normal. I didn't know. She used words like SUVs and explained what they meant. I asked questions, and she answered them in the most matter of fact way. I appreciated that. I appreciated that a lot. I was there for a long time simply asking my questions, having them answered. I told her what I was doing, about losing weight, about my walking program. She was impressed by my commitment to my own health. She said so. Cheryl, the nice mammogram lady at the hospital, oh, she just talked and talked and talked. I drank her words as if I were dying of thirst. Without prompting, she just asked about breast pain (concerned, I think, that the mammogram procedure would be more uncomfortable for me than for others). I allowed as there was breast pain, just as I've been saying at the cancer treatment center right along. But Cheryl, in talking, said that breast pain was normal. She matter of factly said that 'unfortunately, that was sometimes something that women dealt with for the rest of their lives.' *blink* I had no clue. I'd been enduring these odd tweaks and twinges and thinking that it was not a good thing. Choking back my niggling fears. Trying to be sensible. Only to find out that this is normal. Who knew? Not me.
My own Dr. B is a wonderful person. A compassionate, compassionate woman. The radiologist oncologist is a funny man, and I get a kick out him. But looking at things from a completely realistic point of view, I realize that what I am looking for in all of this is not just the blind reassurance. 'What are you worried about? If anything, you've been over treated.' Words that made me feel silly and overdramatic. (I HATE drama, I tell you). I don't want to be comforted. I just want to win. I want to know the truth. I want to hear the numbers. I want to feel free to ask my questions and feel as if the answers I receive are the truth, the unvarnished truth. I'm not saying that I'm lied to, but I am saying that in an attempt to be positive, there is information that I don't hear, that I read about it someplace else, and it comes as news to me, and it shouldn't. I am out here, adrift. That's what I feel like. I haven't been to a support group meeting for a while now. Between work and school, I'm usually scheduled for something else that night. I've never gotten anything out of these meetings before, not really. Just good friends. Laughs. Philosophical musings on cancer. I can attend the meeting this month. I think I'm going to. But really, what I want most in this world is to sit down with that woman from Ludlow, the young mother with metastic breast cancer. I want to sit down and talk for hours about fighting, about winning, facts, figures. I have just read that the most critical phase, post treatment, is the first two years. I did not know this. No one ever said. These are the sorts of things that I want to know. These are the sorts of things I need to know. I am nearly one year out of treatment, and I don't like picking my way blindly.
(if any of my local readers have an idea about who this woman is, please direct her to my blog, to my e-mail. I can also provide my phone number.)