Boring

The other day, at my latest visit to the Cancer Center, I was discussing side effects with my team: my oncologist and a couple of nurses. They had me define what I mean by terms like “indigestion”, “heartburn”, “constipation”, “migraine aura” so they can quantify the severity for their records and compare them to other patients. Since I’m in a clinical trial, my chart gets reviewed by a lot of people, and they need to maintain clarity and consistency in their record-keeping.

After a while, my doctor got up, hugged me, and told me she loves me because I’m boring. I’m fairly certain she wasn’t commenting on my personality, or the state my life has devolved to – at least I hope that’s not the case! Rather, she’s very pleased with the lack of turmoil in my health profile.

In fact, most of the time when I think about my cancer these days, I think about it in the past. It’s not gone, and I really must guard against getting too far ahead of myself; but the truth is, I feel great. My symptoms and side effects are manageable and under control, and my energy is quite good. One day last week, I even dashed for a commuter train!

I still have months of chemotherapy left. We need to put the whole of the disease behind me, which means taking every last step to a completely tumorless scan… and beyond. And once that’s done, I’ll need to maintain a lifelong vigilance with periodic follow-up scans.

The adventure goes on… but without quite so much high drama.

Survivor guilt

This is going to sound crazy... sometimes I feel like a fraud, a cancer fraud!

Whenever I meet someone I haven’t seen in a long time, they comment on how good I look. I interpret that to mean I don’t look sick. As evidence, my skin tone is good, my weight is about what it was before my diagnosis, and I exhibit good energy. By all accounts, I look “normal.”

The truth, of course, is that I have a minimal and shrinking amount of cancer, and the drugs I’m taking don’t interfere too radically with my lifestyle. On top of that, since I’m self-employed, my lifestyle tolerates a good amount of flexibility.

That’s not to say this has been easy for me. The cancer ordeal is a rough one, a tremendous trial of body and spirit, a true nightmare of details, reordered priorities, and anxiety. Cancer robbed me of concentration and focus at a time when I couldn't afford an extended crisis in my life (Is there ever a good time?!), and even now, I'm clawing my way out of the trouble I managed to get myself into by having my attention diverted.

No, it hasn’t been easy, but I am alive. And I have prospects of living a long and healthy life from here on out. To be sure, I’m very happy about that. In addition, my life is enriched by the struggle, in some weird way. But I’m also dogged by guilt. Not everyone survives cancer. And cancer or not, many people are in much worse shape than I am.

For example, I’ve been following the progress of a man in his mid-forties who I used to know. He was young and smart and funny and competent when I knew him fifteen years ago. Now he’s recovering from a major stroke, brain cancer, seizures, meningitis, and the effects of countless drugs and treatments. According to his wife’s blog, his days revolve around many hours of physical therapy, speech training, acupuncture treatments, naps, and endless doctors’ appointments. He’s shown tremendous courage, and now, a year and a half into his ordeal, he measures accomplishment in the number of unaided steps he can take from his bed to his fish tank – about a dozen.

Another friend is suffering through his mother’s bout with lung cancer. She was recently diagnosed with advanced symptoms. Her treatment is so unpleasant it leaves her wondering how much of the “cure” she can endure. My friend and his family are reliving the pain they went through twenty-five years ago with his father in a similar situation.

Yes, everyone has their own particular form of torture to overcome; life keeps throwing tests our way. I've always thought of myself as a survivor and hope that's played a part in my struggle with cancer. Cancer is cancer is cancer. Still, it's wrenching and humbling to look around and see what other people are forced to deal with….

My team

I am so moved by all the kindness that has come in response to my last blog post! Sometimes I feel very alone in this campaign against cancer, but today is not one of those times! Comments on the blog site, private emails, phone calls: I can’t tell you all how touched I am by your concern and good wishes and your willingness to keep up with news of my progress.

The past half year has been a trial for me, for sure. But one thing that has emerged is a strong awareness of how blessed I am.

Thank you dear friends.

Fewer and smaller

I met with my oncologist today to discuss the results of Friday’s PET scan. As in the previous two scans, there are no metabolic hot spots at all, no signs of active malignancy. The tumors are continuing to shrink and disappear. The largest one is now 8 x 4 mm, down in size from 8 x 9 mm on the prior scan. Things are still moving in a positive direction; all indications are that the cancer is on its way out.

This report comes as a relief. I was nervous about dropping Genasense out of the mix of drugs. My doctor said she wasn’t worried about that, but admitted her concern about the long delay between cycles two and three. We seem to have weathered that storm.

But what does this mean in terms of how much longer I need to be in treatment? Today is the first day of my fourth cycle. Is this the final cycle?

“No,” my doctor said when I asked her this. “I want to see a clean scan first, and then we’ll go one more cycle after that to make sure we’ve gotten it all.”

I appreciate her intelligent, cautious approach to my health, even though I’m not thrilled to be taking these toxic drugs “ad infinitum”, as I heard her say to someone in the hall outside the exam room.

“Ad infinitum?”

“You weren’t supposed to hear that,” she responded.

She wasn’t condemning me to a lifetime of chemotherapy; just commenting that we’ll go as long as we have to in order to get rid of it all. That’s something I can live with!

Happy New Year!

What a strange thing time is. Minutes crawl by – in the case of my life this past year, minutes crawled by menacingly – but weeks zoom past. And like it or not, ready or not, another year has been consumed.

It’s the second week following my latest chemotherapy cycle and I have another PET scan scheduled this week. I’m nervous about it. I don’t know what to expect since I stopped taking Genasense. The last time I spoke with my doctor about it, she seemed unfazed.

“There’s no reason to think the results of this scan will be any less positive than they’ve been in the past,” she said. “It’s a clinical trial. We don’t know what the exact dosage needs to be in order to be effective.”

I keep reminding myself of that; the Genasense I took through the first two cycles may very well have completed its job. It boosted the effects of the remaining two drugs I take, that’s for sure. It’s likely the Abraxane and Temodar can continue to wipe out the small amount of remaining cancer without assistance. We’ll know more when the results of the scan are in and I meet with my doctor again on Monday.

And in the meantime, Happy New Year! I wish peace and great health to all my friends and family, all of you who have sent good wishes my way this past year. May 2008 be wonderful for all of us!

On the Santa Train

Last weekend I took a ride a short way up the Hudson River with my sister, her daughter, and my niece’s three young daughters. The MTA event involved a festively decorated commuter train, goody bags for the kids, and a Santa Claus and elves who made their way through the train cars to talk with all the children. The trip started in Grand Central Terminal and ended up back there in less than an hour. The anticipation beforehand was very exciting for my grand-nieces, and the actual trip was a lot of fun.

Now, I realize that Santa is not everyone’s cup of tea because the myth doesn't square with all belief systems. But I long ago stopped seeing Christmas as a religious holiday. More than anything else, it's an extended commercial ploy to enforce giving, and buying. I find the commercialism and crowds of the season nearly intolerable; all the hoopla makes me quite cranky.

Apart from my humbug air, however, it's still absolutely magical to be able to accept that one man can make his way around the world delivering gifts to all children in a single night. It’s only for the young, and what a delight it is to see through the eyes of those young believers. In fact, after six months of dealing with cancer, I long for my own Santa Claus!

My cat

I glanced over from the exercise machine this morning and saw my cat slinking through shadows in another part of the basement. When I finished working out, I sat on the couch to watch the end of the DVD I use as a treat to get myself on the exercise machine in the first place. I noticed the furry, speckled ball curled up on the next cushion and reached out to pet her.

Problem is, my Kitty's been dead since last April. The ball of fur sitting next to me was a hat I’d been wearing to warm my bald head before I started exercising.

Now, this was not a grim-reaper-and-a-bright-white-light moment. I’ve been sensing my cat’s presence for the past eight months. It doesn’t surprise me that my house has absorbed her rhythms and plays them back to me on occasion. She was a deaf, forgetful, old lady the last few years of her life, but she filled my home and my heart.

I could always count on a loud scolding from her when I walked into the house after being away. And there were frequent signs that she romped and cavorted, even when I wasn’t home. She loved to curl up in my lap… along with my laptop, or perch on top of the printer while I worked, or doze in one of the many baskets she loved as much as I do. She sat in a window and watched every step I took to the mailbox and back. She never ate table food… except for ice cream which she licked daintily from a spoon. And she always slept in my bed.

She was my friend, my soul mate, for nearly nineteen years. I was with her when she died and it was one of the saddest moments of my life.

Good heavens, I miss that cat!