It is not something I talk about much. Fortunately, it doesn’t consume my thoughts the way it once did. I have mentioned it, however, in several comments lately and also for another relevant reason, thought I would share it.
Nothing prepares you to hear the word cancer… nothing… but at 28 I heard it.
My brother-in-law was visiting and told my husband that he should get some of his moles checked out. My husband was hesitant, but I told him I had to get some checked out too, so we could go together. The dermatologist took one look at him and said that his skin type didn’t have many problems with skin cancer. He took one look at my moles and said that we had to get a biopsy because it could be melanoma. He tried to backtrack a little saying he could be wrong, but in a sense, I knew then, what I would be hearing. I wasn’t much of a sunbather, but I wasn’t from a generation of sun-block. My grandfather had melanoma, so there was an obvious genetic risk as well.
A few days later, I heard it: Malignant melanoma. Skin cancer sounds so superficial. It sounds so insignificant. With other kinds of skin cancers, the chance of death is minimal, almost non-existent even. With melanoma, it is not so simple. With melanoma, it depends on the timing. If you catch it early, stage one, you have a 95% chance of survival. If you catch it too late, stage 4, you have a 5% chance of surviving.
There is a lot of waiting at first, with few answers, as you go through a complex staging process that involves removing the tumor, checking the lymph nodes for involvement and going through a series of scans (CT, PET, MRI) to check for metastases in other parts of your body.
The original tumor was removed, leaving a 7-8 inch scar. The doctors tested the lymph node connected to the tumor site and found a micro-metastasis, which put me in an entirely different risk category. All of the lymph nodes under my right arm were removed and luckily there were no cancer cells in any other nodes. All my scans were clear, fortunately, but since I had lymph node involvement, I was at stage 3a which statistically put me at about a 50-50 chance for a recurrence; and a recurrence put me at a 5% chance of survival. It was terrifying.
The other difficult thing with melanoma is that it is basically untreatable at later stages. The reason the chances of survival are so low at stage 4 is that once melanoma spreads to other parts of you body, chemo and radiation are powerless to deter it. They try new chemo cocktails that work for some patients for a while and they have made some progress with a specialized vaccine, but it is still in the study phases. But mostly, chances are not good.
Melanoma is an immuno-sensitive cancer, so since, chemo doesn’t work well once you get a recurrence, they try to boost your immune system so that your body fights off any cancer cells before forming tumors elsewhere. The standard treatment is Interferon, which your body makes naturally; it is administered, of course, in synthetic, highly toxic doses.
The first month I received a dose daily, which required a port-a-cath: a strange kind of button-shaped object they surgically place under your clavicle, attached to a vein to more easily administer fluids—it is much easier than getting an IV every few days. After that first month, I gave myself shots in the leg three times a week for the next 11 months.
On the positive side, I have seen all of my organs, even my brain—cool! I also had so many needle pricks that year that I am absolutely undisturbed by needles.
The worst part was the first month, in such high doses, there are a lot of unpleasant symptoms, though not nearly as bad as a chemo regimen. The rest of the year was a blur, really, of fear and sickness. I was trying to finish up my Master’s degree, which took me an extra year. I stayed in school and had to continue teaching in order to have health benefits. I wanted to have a diversion though, and to continue with some semblance of a normal life. It was one of the darkest years of my life, and though my husband was very supportive, I felt very alone.
The worst moment was thinking I had a metastasis. Something odd had shown up in my abdominal CT scan. My Dr. ordered a PET scan (a special x-ray to see how your body metabolizes glucose—cancers cells are sugar-greedy). My abdomen was clear, but there was something in my knee, of all places. It looked and acted exactly like cancer. I asked if there were any other possibilities, they said no. I had to get a needle biopsy (not fun under the knee-cap). I waited in horror all weekend for the results, trying to prepare myself mentally for what the doctors were sure was going to be stage 4—it didn’t matter that it was just the knee, once it starts spreading, there is not a lot that can be done. It came back some weird non-cancerous blob that just strangely sucked up a lot of glucose. It was removed, just in case.
One of the things I hated most was feeling that my body had betrayed me. Cancer cells are your own cells gone awry, gone undetected by the normal checks and balances your body has to deal with abnormal cells.
Another thing I hated was the psychology of it: there is self-pity at first, wondering “why me” and thinking of all the experiences I may not get to have, there is the wondering what I had done to deserve it; there is fear and the difficulty in trying to control the panic; there is anger, there is sadness, there is anxiety, and it was hard to watch those I love try to deal with it.
People have no idea what to say, which is awkward. They tell you about their brush with death in a near-car accident. They tell you it could be worse. They tell you that things happen for a reason. They tell you that you have to be positive.
You say that the near-car accident must have been frightening. You try not to imagine what it would be like if it gets worse. You can think of lots of reasons why you deserve cancer. You feel guilty when you are depressed and fearful. Mostly, you just want to curl up in a ball and cry… a lot.
It is comforting to hear other cancer patients’ stories, but it drove me nuts to hear things like “Cancer was the best thing to ever happen to me” (Lance Armstrong). I guess there is a way in which it changes your priorities, but I would love to never have had cancer, to not know that fear. That fear changes you. It lessens over time. After months, and years, you don’t think about it nearly as much, you don’t obsess on reading stats and studies on the internet, trying to figure out your chances. But with every odd pain, every headache, every bout of dizziness or nausea, you wonder. Every time your check-up time comes around, even though you have felt no symptoms, you wonder if something will show up on the CT scan. You wait with bated breath for the phone call that says “all clear.”
I got such a phone call this Wednesday, after my CT scan Tuesday. After 6 years, my scan still looks normal. I relax; the invisible weight lifts. The nervousness is replaced with a mild euphoria. The anxiety is replaced with gratitude.
I am grateful for all the happiness that has come since that year, especially my two little peanuts.
It has been a happy Thanksgiving.
I hope yours was happy too!