Tonight as we walked out of the movie theater with some friends, an overwhelming sense of contentment washed over me. Part of it’s the weather, I think—something about these warm spring evenings does it to me every time. But tonight it was more than that.
After we got in the car, I said to J.P., “I’m just so happy to be here.” He was like, “What—happy to be in the car?” I replied, “No. Here on this earth.”
Some days, I can hardly believe I’m still here. And honestly? I think it even surprises my oncologist. Of course, he’d never admit that, but at my last visit I could tell he was pleased with my progress. I’ve been cancer-free for four years, but that’s really only half the story.
I was diagnosed on September 12, 2001. The country was reeling from the terrorist attacks, and I was in my own personal hell. I couldn’t bear to watch any of the coverage on TV—survivors posting signs and wandering the streets in search of their loved ones. It was all I could do to keep putting one foot in front of the other.
One of my coping mechanisms is sleep. If I can just sleep, everything will be better when I wake up. Know what? That doesn’t really work with cancer. Each morning for about a week, I’d wake up and the realization would sink in once again. The tears would begin to flow, and I would bawl and bawl as J.P. held and comforted me.
Through research, we learned that a lumpectomy plus radiation is as effective as a mastectomy, so that’s what I decided to do. Because I also had nine positive lymph nodes, I also went through chemo. I started chemo at the end of October, and was bald long before Thanksgiving.
The hair was a really big thing for me. I’ve never really liked my hair, but I’ve always been obsessed with it. So the idea that it was going to fall out was terrifying. When it began happening, I was paralyzed. I didn’t want to take a shower because more hair would fall out. I didn’t want to put on the wig because when I took it off, more hair would fall out. Finally, after a weekend when I did absolutely nothing because it might make my hair fall out, I asked J.P. to shave my head.
I’ve never felt so liberated! For two months, the hair and its falling-out process was a constant weight on my shoulders (yes, I was dealing with cancer, and one of my main concerns was my hair). I wasn’t happy to be bald, but I was so happy not to have to WORRY about it anymore. That night, we went to see Harry Potter and the Sorcerer’s Stone to celebrate.
I did pretty well on the chemo. J.P. took great care of me (except the time he made stir fry after I’d had a treatment, and I thought the smell was going to force me to move out). He would wake me up in the middle of the night to make sure I took my anti-nausea meds, and he made sure I ate even when I didn’t want to. I only got sick a couple of times, and even that wasn’t bad (as puking goes). I never had one of those toilet-hugging experiences. Suddenly I’d realize that I didn’t feel so hot, and I’d immediately throw up and feel better.
I never had to take neupogen or epogen shots to raise my blood counts. I never got an infection. I never had treatment delayed because my counts were too low. And I never took more than a day and a half off of work for a treatment. In short, I couldn’t complain.
After six months, the chemo was finished. Hooray! Next up: radiation. I went for my initial consultation in April, and when the doctor examined me he found a lump. I couldn’t believe it. Even he couldn’t believe it. I don’t think he was quite sure what to do, but he ended up prescribing a mammogram.
I went for the mammogram, and unlike my previous one, it was inconclusive. The radiologist said we could wait and see, but hello! I’ve already had cancer once. You think I’m going to WAIT AND SEE whether it’s come back?!? I’ve already got my shirt off—where’s that biopsy needle?
This was a really weird time for me. Part of me was terrified, of course. If the cancer came back while I was on chemo, what chance did I have? But another part of me just wanted to keep on going. Okay, it’s back. What’s next? When can you get me in for surgery? What kind of drugs can we throw at it this time? Of course, much of this was before we had the biopsy results.
We found out the next day that the tumor was malignant. It hit me like a ton of bricks. How could this be happening? Did they miss something the first time? All indications were no, as this tumor had different properties than the first one. The cells were less differentiated, which means they looked more like normal cells than my first tumor had. And the new tumor wasn’t affected by estrogen or progesterone like my first tumor was.
My oncologist was stumped. He didn’t just recommend that I get another opinion; he INSISTED on it. I really, really respected him for that. My health was more important than his ego. So off we went. To the Mayo Clinic, (it pays to have grown up 15 minutes from there, and to know people who work there—an inside connection helped us get an appointment quickly), Sloan Kettering, (one of J.P.’s college friends worked there, and helped us get in there quickly too), and the University of Pennsylvania, where my oncologist did his fellowship.
The opinions ran the gamut. Everybody agreed that more surgery was in order, and they thought radiation would be a good idea. But what then? More chemo? Another, newer drug called Herceptin? Arimidex or Tamoxifen? Decisions, decisions. This was the worst time. It felt like we weren’t doing anything! I just wanted to get on with it.
Finally, we cobbled together a plan. A little Mayo advice, none of the Sloan advice (that guy was very discouraging), and more than a little educated guessing on what might work. I met with the surgeon to talk about the mastectomy. Although the recurrence was in the same breast as the original tumor had been, I wanted to get rid of both of them. She questioned me:
Doc: Why do you want to do both?
Me: I’m into symmetry.
Doc: (laughs) Are you absolutely sure?
Doc: (whispers) That’s what I’d do too.
I loved her for that. And to this day I’ve never regretted it.
In the summer of 2002, I had 33 days of radiation. They began giving me shots to put me into menopause so I could take Arimidex (it’s only approved for post-menopausal women, but so far the studies have shown it to be better than Tamoxifen), and I started on Herceptin.
The good news? Although it’s given as an infusion (through an IV), Herceptin isn’t chemotherapy. It’s immunotherapy, which meant that it didn’t have a lot of side effects, and it didn’t make my hair fall out! Without getting too technical (as if I could if I wanted to), the Herceptin attached itself to specific kinds of cells that my tumors overexpressed. That allowed my immune system to recognize those cells as foreign, and it worked to destroy them. (Chemo destroys good cells as well as bad—that’s why it causes hair loss, mouth sores, and a multitude of other side effects.) In the fall, after I’d had a chance to heal from the radiation, we did add another chemo drug (Navelbine) into the mix for good measure.
I took Herceptin every week for about a year. And I would’ve continued to go back for more, but they made me quit. I still take an Arimidex pill every night, and will continue that for about another year. So technically I’m still in treatment, but it doesn’t really feel like it.
I kind of feel like I’m tempting fate by writing about this—as if pointing out my four years of survivorship will jinx me and cause another recurrence. So I’m crossing appendages and knocking on wood every few minutes, even though I don’t truly believe in any of that.
So now that you’ve made it to the end of my marathon post (thanks for hanging in there, by the way), do you see why my doctor is pleasantly surprised? I’m sure you can understand why I’m just . . . happy to be here.