Today it is three weeks, five days and a lifetime ago since I was diagnosed with inflammatory breast cancer.
I first began to realize that something might be wrong with me on the day before my birthday. By the day of my birthday, I was seriously anxious. My symptom pattern fit what I was reading on the Internet about IBC far too closely. I couldn’t figure out if this was the worst birthday ever, or whether I’d just been given the most previous gift ever—the gift of knowing early so I can have the best possible chance of beating this.
Maybe it was both.
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This week I went to Duke University Medical Center on Monday to get a second opinion about my case. I’ve had to digest so much information and learn so many new things and make so many life-altering decisions so quickly…hearing another perspective on these things seemed like a wise thing to do.
As I stood in line and waited to register at the front desk, I felt myself being sucked inexorably into the maw of Cancer World once again. It seems like every time I manage to find some point of equilibrium in my life—some place where “I have cancer” is not front and center in my consciousness—something comes along to drag me back into the heart of the beast. It is a very hopeless feeling.
I sat in the lobby, waiting for my name to be called, and I saw all of the people. People not like me. They were pale, fragile-looking souls. Many were wearing scarves and bandanas on their heads—the sure sign of the cancer patient rendered frail and bald by their treatments. Being sucked into the maw, I knew that I was destined to become just like them, and it was very, very depressing.
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The doctor at Duke agreed that the treatment plan my care team has outlined sounds like a good one, but she wondered where my PET scan results were. I told her that my team had decided I didn’t need PET scans because they give too many false positives and we can learn just as much with the CT and the bone scans we did.
But she insisted that a PET scan could provide valuable information about whether there was lymph node involvement above the collar bone—an area that the other scans had not touched. She also said that this information could be useful to the radiation oncologist who would be treating me as the last phase of my course of treatment. So she called my oncologist, and in a heartbeat I had a PET scan set for Thursday.
When the results came in, it showed no lymph node involvement above the collar bone, but a suspicious area in my left tonsil. Considering that I had my tonsils out when I was 5 years old (in fact, that hospitalization may have been what caused me to get infectious hepatitis and almost die a few months later), it seems curious that my “left tonsil” is cause for concern today. It’s possible that this is just one of those false positives that PET scans are famous for producing.
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One of the best things that happened this week was getting to meet a woman named Ashley. She is the first actual cancer patient (not cancer survivor) that I’ve gotten to know, and she could not have been better for my state of mind.
Ashley had ovarian cancer that she received treatment for a few years ago. When her course of treatment was finished, she was told that they could find no evidence of cancer and that she had a 90% chance of remaining cancer free for a long time.
But within a couple of years, the cancer had returned as metastases in her lungs and her spine. She is now, as she casually said, one of the desperate people who is participating in a Phase I clinical trial. Phase I trials are the most experimental of all the treatment research studies. Usually the people who enroll in them are people for whom all of the traditional treatments no longer work. They are the people who have been written off by mainstream medicine as incurable, so they have little to lose by joining a trial and hoping that some new, experimental treatment method will help them survive just a little while longer.
This all sounds very sad…and it is. But to be around Ashley, you’d never know this. You come away from being with her and you are encouraged and energized. We talked about having cancer and how tiring it is when that occupies your every waking moment. I said that after only 4 weeks, sometimes I’m so tired of myself-as-cancer-patient that I can hardly stand me, and I marvel that I have any friends or family who are still able to hang with me. She just laughed and agreed that it sucks the way cancer takes over so much of your life, when you have it.
We talked about alternative methods of healing that she tried with her cancer and that I am trying with mine. She convinced me to think seriously about trying a method she discovered rather late in the game that helps to protect your healthy cells from the damage caused by the chemo while leaving the cancer cells fully exposed. She also sang the praises of juicing.
When my ex-husband and I were newly married, he juiced carrots a lot. I hate the taste of carrot juice, and the pulpy mess it left in the juicer was disgusting to have to clean out all the time. We used to have endurance contests to see who could put up with the smell and the gnats longest, and who would cave and be forced to clean the stupid juicer. So my impressions of juicing were not very positive.
Ashley insisted, however, that juicing was far more than that, and she invited me to go to her house so she could make me a juice drink. She threw rainbow chard, a beet, a carrot, a slice of fresh ginger, some flax seed, blueberries, blackberries, raisins, ice and water into her Vita Mix and threw the switch. Much to my surprise, this odd combination of ingredients tasted superb! I’m afraid I’ve become a disciple! Too bad that purchase of a Vita Mix is not tax deductible as a medical expense!
We also talked about whether I was going to be able to work during my treatment, how many sick days I have left to use, and whether I could go out on disability if necessary. I told her that I had thought about it, but if I was out on long-term disability, it would cut my monthly income, and I don’t think I can live on that. More than that, when I reach retirement age, disability would end and I would be forced to go on Social Security, which would cut my monthly income even further. (I have no other real retirement benefits at this point in time.) She looked shocked that I was thinking as far ahead as being able to draw Social Security. Very matter-of-factly she said, “I don’t think I’ll live that long.” And that sent a pang through my heart.
When I left Ashley that afternoon, I felt confident and buoyed like I hadn’t felt in days. I thought, “If *that* is what being a cancer patient means, I think I can do this!”
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I also joined a listserv for IBC patients and survivors. It has been the most incredibly good experience to have access to this group of people who all have (or have had) the same kind of cancer that I do. I have been asking questions and venting with them ever since I joined…and they have been extremely kind, extremely patient, and extremely supportive. I am grateful. Because this weekend has been hard, again, and I have needed all the support I can get.
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One of the take-away insights that I have gotten from meeting Ashley, joining the IBC listserv and getting to know the stories of some of the women there is that life with cancer is a crap shoot.
I've always felt that I had a certain amount of control in just about every situation in life. If I wanted X outcome, then I needed to do Y and Z in order to get it. But if I did Y and Z, it was almost certain to lead to X.
Here in Cancer Land, if I want X outcome (disease-free survival, long-term), I need to do Y and Z. But that doesn't necessarily mean I'm going to get X. Instead, whether I get it or not seems to be a matter of the luck of the draw. A crap shoot.
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There are two arguments that people tend to use when they are trying to be encouraging. One is that although the statistics for long-term, cancer-free survival for my kind of cancer are not as good as for other kinds, I am not a statistic. I am an individual. The second is that I need to “keep a positive mental attitude” so that I don’t become one of the statistics—so that I am a successful individual cancer patient.
It’s true, I am an individual...but the statistics are made up of individuals just like me. And some of them die. And some of them live. With my kind of cancer, it's not enough of the latter.
What I have learned this week from Ashley and from the IBC listserv is that undergoing treatment for cancer is not some bargain that you strike with God. It's not like if I am lucky and catch the cancer early, or if I am good and do all the treatments the doctors say to do, then I will be one of the individuals in that statistical pile who lives. Both of these things can be true for me, and yet I may still die of cancer.
My life--my future--is, at this point, a crap shoot.
I realize that there are no guarantees for any of us...but for me, there are a lot fewer guarantees than for those of you who don't have cancer. My whole world has gone careening out of control, and there is no way to get it back. I am trapped in a nightmare and I can't wake up. I can never wake up.
And I just don't know how to put a smiley face on all of that.
As for “Keep a positive attitude,” I'm hearing it everywhere. It's as if people are trying to talk me out of my rage, depression, and despair, when I feel them, instead of just being with me in those feelings and letting me work them out at my own pace.
Every time someone tells me to "keep a positive attitude," I feel like I'm supposed to hurry up through my rage, anger and despair so that I can get to "the good stuff" of a positive attitude because THAT is what will cure me. THAT is what will make the cancer treatments work for me.
But I look at all of the people who die from this disease, and I think, "So what was their problem? Did they not keep a positive enough attitude? Was it their fault that they died, because they didn't think positive enough? If, God forbid, my cancer is not put into remission with this treatment or if, God forbid, it comes back in a short time, will that be because I didn't do my part by keeping a positive enough attitude?"
I have seriously thought about slapping the next person who tells me to "keep a positive attitude" when I'm feeling down. I've begun to think that the advice is not so much for me, but for them. Because they don't know how to just be with me when I'm down and help me walk through that dark place. They need me to be happy, so that they know how to relate to me.
I know that a "happy place" is highly desirable for the long haul. But I don't think I can find that place for myself by squelching my feelings of anger and depression/despair and pretending to be something I'm not.
When “positive” finds me – and at moments it does – it is a genuine positive, not a manufactured one. And I only want the real thing. Not some cheap imitation.
Until then, I will honor whatever negative emotions I am feeling as legitimate expressions of a soul that has been whisked out of her everyday life and thrown headlong into a chaotic universe in which none of the old rules seem to apply any more. In this universe, getting to X by doing Y and Z is no guarantee—no guarantee at all—that you will actually get to X. In fact, achieving X appears to be a bit of a crap shoot. Quite a bit more of a crap shoot than it ever was in my old reality.
And who wouldn’t be anxious and angry and afraid and depressed, living in a world that is *that* much out of one’s best efforts at rational, conscious, effortful control?
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One of the disturbing things about getting this diagnosis, as a single person, is facing the financial burdens that it will place not just on me, but on my children. One of the ways families advance and are able to become more well-to-do, across generations, is when the older generation is able to leave a little something for the younger generation, who builds upon it and then leaves a little more to their own children. I had hoped to be able to do that for my kids, who are struggling to make it on their own, as it is.
That’s not going to happen now. I’ll be lucky if I don’t leave them with a stack of bills against my estate—no matter whether the cancer takes me now or I die at a ripe old age of natural causes.
Cancer is debilitating on so many levels.
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The first battle with cancer has been engaged. I have wrestled with the demon of cancer in its psychological and emotional guise, and with the personal demons I brought to the battle with me. There has been no clear victor. I am weary and worn. Emotionally outraged and exhausted. Weary of soul, and battered of heart.
I have fallen into a nightmare, and I can’t wake up. I can never wake up. Things can never be the way they were before.
The kaleidoscopic forest is shattered…and I don’t know if I can put it back together again. But one thing is certain: If I can, it will not be the same forest.
Tomorrow begins the next phase of the battle: chemo. I hope my luck is better there.
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