Happy Birthday to Me!

Today’s my 40th birthday. Like so many things, birthdays take on new meaning once you’ve had cancer. Life before cancer: “Oh no, I’m 40! Over the hill! I’m getting old!” Life after cancer: “Hooray! I’m 40! I’m still alive!”

To non-cancer people, birthdays and aging can be depressing because these bring them closer to infirmity and death. To people who’ve had cancer, birthdays are triumphs over infirmity and death. So each birthday I celebrate is me tweaking my nose at cancer and saying, “Ha! You haven’t gotten me yet!”

When I was in my twenties, I thought I wouldn’t want to live past 60 or so. I wanted to die while I was still in good shape, physically and mentally, so I wouldn’t have to witness my body and mind slowly wasting away. At the time, 60 seemed like a very old age but as I got older, 60 seemed too young to even think about dying.

But now that I’ve had cancer, I’ve gone back to thinking that 60 is pretty old for me -- that is, if I can make it to 60, I’ll think I’ve gotten more than a bargain out of life. I’d even be grateful to live to 50. Josie will be 13 and Toby will be 11 then. Kids that young shouldn’t lose their mother, but at least at that age, they’ll have some memories of me and memories are better than nothing at all.

But I’m getting ahead of myself. One birthday at a time. I’ll just keep holding out for one more year.

Support Group

I went to a support group meeting for the first time today. It was for breast cancer survivors, organized by Singapore’s Breast Cancer Foundation. I’d always dreaded and avoided support groups of any kind because I saw them as a bunch of people with nothing but an affliction in common getting overly emotional and sharing too much. I have to confess I also saw going to support groups as a sign of weakness. I suppose it’s a bit arrogant, but I really didn’t think I needed support from a roomful of strangers.

But this meeting turned out to be far from what I’d expected. Most of the women there were interested in sharing information, not tears. And I think I was able to help a few women who had questions about their treatments. But mostly, I’d like to think I gave some of them hope. All the women there were Stage 0, I, or II. It must give them some hope to see someone like me with Stage IV cancer, up and about, alive and kickin’. Of course, I can’t let them down by dying, so that’s one more reason to stay alive.

I suppose support comes in all shapes and sizes. Today, mine came in the knowledge that I was helping other people. I think in some way, I enjoyed being the most serious case there -- almost like a soldier with the biggest battle wounds. It’s good to survive a battle. But it’s even better if you can tell your story to others fighting similar battles, so they can see that they, too, can win.

Tired Tears

I went to my gynecologist for a check-up today and she said I might have HPV (Human Papilloma Virus) -- the virus that causes cervical cancer. It could be something else altogether, but we won’t know until the lab tests come back. As she told me about how unlikely my particular potential HPV infection was to lead to cancer, I diligently took notes as a medical student would -- detached and cerebral.

Then the doctor told me to see her again in three months’ time and I opened up my medical calendar to enter the appointment. The calendar was covered with medical tests: bone scans, CT scans, brain MRIs, blood tests, chest X-rays, liver ultrasounds, and on and on. And that’s when I got a bit teary. I just felt tired of cancer. Seeing my life laid bare in front of me with scan after scan after scan was such a stark reminder that I’d never have my life back the way it was.

Sometimes I just miss my pre-cancer life for the very simple things. I walk by bakeries and ice cream shops and wish I could just go in and have a chocolate croissant or an ice cream cone without even thinking about the sugar. I wish I could buy shampoos and lotions and not worry about the parabens and other potentially carcinogenic chemicals in them. I wish I didn’t have to schedule my life around medical appointments. I wish I could have a broken leg instead of cancer. Or anything that could be fixed then forgotten so I could move on and just be done with it.

I haven’t cried a whole lot since all of this happened, but sometimes I DO feel like letting out a plaintive cry, “I want all of this to go away. I want to go back to the way things were.” Fortunately, this feeling doesn’t last long and I move on, but I can see how some people can really wallow in their sorrow. It’s just easier.

Chemo Club

I went with a friend for her very first chemo treatment today. I felt like a senior in college showing a freshman around the campus. She was nervous and uncertain; I was upbeat and confident. It seemed like a long time ago that I was in her position.

I don’t recall being worried about whether chemo was the right treatment for me or feeling anxious and fearful of the side effects. I went into it thinking chemo was a given in my case and I didn’t think about the side effects enough to get my fears stoked up about them. I think I was happy to have chemo because I was pretty convinced it was going to help save my life. The initial period after diagnosis was so fraught with uncertainties with bad news after bad news, that by the time the chemo verdict came down, I was relieved. “Mastectomy, chemo, radiation, then I’ll live? Hooray!”

In my friend’s case, she thought she might not have to have chemo, so her expectations were a bit different. It’s all relative. I went from the spectre of fairly certain death to chemo, surgery, radiation, LIFE! It’s all a matter of expectations.

There were two other women at the chemo clinic I knew as well. And I met another woman who was there getting her last treatment. So there were five of us happily chattering away and comparing experiences. All very positive, cheerful, friendly. Cancer seems to make people friendly. I’ve never met a cranky, nasty, mean-spirited cancer patient. Maybe because those are the ones that die.

Gearing Up for the Big Fight

One thing people like to tell you when they learn you have cancer is that they had an aunt, a grandmother, a colleague, or someone else who had cancer and beat it. I like hearing those stories. I like hearing about famous cancer survivors like Lance Armstrong, Kylie Minogue, and Sheryl Crow. But for some reason, people also don’t mind telling you stories about people they’ve known who have died of cancer. Now, I wonder why I need to know that?

Since my diagnosis last December, I’ve been told numerous stories of people who’ve died of cancer. And if it was breast cancer, I can’t help asking about the details. What stage? Did she get chemo, surgery, radiation? How long after diagnosis did she die? Where did it spread to? Did she suffer a lot of pain in the end?

It might sound morbid and defeatist to ask such questions, but I think it’s my way of gearing myself up for THE BIG FIGHT. I need to know what to expect if I’m going to be prepared for it -- if and when IT comes. IT being metastasis or spread to the major organs.

I’ve found some preliminary statistics for patients with my particular experimental chemo combination, put out by Genentech, the pharmaceutical company that makes one of the drugs (Herceptin). The average survival rate was three years. That was higher than the survival rate without Herceptin. Of course, that’s just an average, and I know I’m not average. That’s not just arrogance. I think my ultra-healthy diet, supplements, exercise, positive attitude, proactive involvement in my own treatment, all put me in the above-average patient category.

But the facts, statistics, science are all there. There’s a very high chance that the cancer will come back, spread to major organs, and kill me. So while I’m telling myself that I’m outside the statistics, and while I’m doing everything I can to boost my body’s defense system, I also have to use the brain I still have and face the possibility of THE BIG FIGHT.

I’ve found a cancer center in the U.S. where I’d like to be treated if the cancer comes back. I’m looking out for clinical trials. I’m still researching alternative treatments. I’m following cancer news to learn about latest developments in research into new drugs and treatments. I plan to start getting my affairs in order, whatever that means. (Must finish those baby scrap books for the kids!)

None of this means I’ve given up my positive outlook. If anyone has a chance of surviving this cancer, it’s me. But I’m optimistic, not delusional. There’s an elephant in the room. Closing my eyes isn’t going to make it go away. But if I keep my eyes open, maybe I can tame it and learn to live with it.

I’m a Guinea Pig

I had a meeting with my oncologist today when I went in for my regular Herceptin treatment. I wanted to know why I didn’t have any of the usual symptoms of chemo that everyone else had -- nausea, vomiting, fatigue, neuropathy, and so on. And why one of the chemo drugs I got wasn’t even listed in the American Cancer Society’s book on breast cancer, which was published in 2004. And why I hadn’t come across anyone, either in person or on the Internet, who’s had the same chemo drug combo that I’ve had.

Apparently, my protocol (drug mix) isn’t really used in the U.S. It’s more common in Europe. One drug, Herceptin is so new, that it only became available in Australia in May this year. And in the U.S., it’s only available for late stage breast cancer (the desperate cases), and early stagers have to apply for clinical trial. There’s no five-year survival rate data on my protocol because this drug mix hasn’t been used long enough.

In other words, I’m a guinea pig. That means, for good or bad, all those statistics on survival rates for my cancer don’t really apply to me. After the five-year clinical trial period for my chemo protocol is up in the coming year, data will start to come out on survival rates, and then we’ll have a better idea of how long my life expectancy is. But again, that’ll just be averages of past cases, not necessarily my own particular case. But at least that’ll give me some idea of how other patients on my drugs have fared.

My doctor said there’s an oncologists’ meeting in March in Amsterdam, where some of the initial data should be released. I’m thinking of going to Amsterdam. Apparently, these meetings aren’t restricted to medical professionals. Anyone can go if he pays the conference fee, so why not? If we have any money left in the bank after my treatment is over, I might just go and call it a business trip. After all, saving my life is my business. Too bad I can’t expense it.

False Hope

There’s no such thing as “false hope”. This term is grammatically incorrect AND it makes no sense. How can hope be false? If you talk about false love, you mean that the person was pretending to love but the love wasn’t real. Likewise, if you talk about false hope, grammatically, that means you’re pretending to hope but the hope isn’t real. Now that doesn’t make any sense. Hope is a “feeling of expectation and desire for a certain thing to happen”. That feeling itself is not contingent on whether or not that thing happens. I can hope for world peace. Whether or not there will ever be peace in the world has no bearing on the quality or nature of my hope.

Giving a cancer patient hope that he will be cured no matter what the statistics say is not giving false hope. There can ALWAYS be hope. In this case, the ends DON’T justify the means. Hope is a means of survival, whether you’re a cancer patient, a child growing up in a war zone, or a U.N. negotiator. The patient may die, the child may be killed, and the negotiator may never see world peace. Was there hope? Yes. Was the hope false? Not real? Absolutely not. The hope was very real and very necessary to keep those people going for as long as they did. Without hope, we should all just lie down and wait to die. Peace negotiators should just collectively quit their jobs.

I have to go on about this because I’ve been surprised that even some of the compassionate, patient-advocate doctors I’ve spoken to say they think doctors should not give patients false hope and that doctors should tell patients if their cancer is “incurable”. Honestly, this kind of thinking makes me want to weep.

Think of all the diseases that were once “incurable”. Even some cancers that were considered terminal just five years ago are now treatable, with patients living way beyond the 6 or so months they were once given. Cancer survival rates only tell you what percentage of people with your cancer BEFORE you have survived. I could look at the survival rates for chicken pox in the distant past and think I might die of chicken pox. That would be silly. So how do we know that a cure for any particular disease won’t be found in the next ten years? Or five years? Or even NEXT year? What if I have enough hope to keep me alive for ONE more year until that cure is found? And after that year is up and there’s still no cure, how about enough hope for just ONE MORE year? And after that, just ONE MORE?

Of course, there’s the practical side. One doctor told me he tells his patients their cancer is incurable so that they can get their affairs in order and prepare their families. I’m not denying that’s a good idea. I made out a Living Will before I went in for my surgery. I even thought about making videos of me talking to my kids so that they could see and hear me after I’m gone (I haven’t gotten my act together to actually do that yet, but I will someday...). But do doctors have to say “incurable”? Do they have any idea what that single word does to a patient who’s just been diagnosed with cancer? How about, “The statistics for patients with your cancer show that only a small percentage survive past the first year. There’s no reason why you can’t be in that small percentage. And advancements in cancer research are so fast these days, there’s no guarantee that there WON’T be a cure in the next few years!” There is absolutely nothing false in that.