No More Herceptin

I was scheduled to have my second-to-last Herceptin treatment today, but I decided to skip the rest of my treatments. I’ve been on the drug for almost a year now, so I can’t see how one or two doses more or less can make any difference. Luckily, my oncologist agreed with me.

According to her, the clinical trials for Herceptin were done with one-year courses, so that became the recommended treatment period. There have been no comparison studies for Herceptin for six months, nine months, or more than one year, so nobody knows what the most effective treatment period is. It’s all just a crap shoot, really. My doctor told me that in the 1970s, people had adjuvant chemotherapy for two years. Now it’s just six months. Who’s to say the same won’t happen with Herceptin?

Fortunately, I had no problems with Herceptin -- none of the side effects, other than insomnia just after the treatments. I even looked forward to getting my treatments because it allowed me to just lie back and rest for two hours without feeling like I had to do anything, since I couldn’t really move around while hooked up to the IV drip. So my reason for skipping the last two doses wasn’t because of pain or discomfort, but because of cost.

The cost of the two doses of Herceptin I’m skipping will pay Josie’s school tuition for a semester. We’ve already spent about US$30,000 on Herceptin alone this year. Add to that the cost of the chemotherapy, radiation therapy, plus three surgeries, and there isn’t a whole lot left over for non-essential spending. I’m grateful we can afford to pay for my treatment. So far.

This cost issue has gotten me speculating. What if I have a recurrence and there’s an experimental treatment that may extend my life for a few months at best? The treatment costs half a million dollars. Would I take the treatment? Would the mere chance of having a few more months of life be worth wiping out our family savings?

This could be more than speculation. Now that my Herceptin treatments are finished, the next step to fend off a potential recurrence is a new drug called Tykerb. Apparently, patients for whom Herceptin doesn’t work or has stopped working after a period can take Tykerb as back-up. Unlike Herceptin, Tykerb penetrates the brain, and 40% of cancer spread in patients who took Herceptin goes to the brain. My doctor says Tykerb will probably be released next year and that I’m a good candidate for it. That’s good news. But I wonder what it will cost? If it costs half a million for a year’s course, for example, will I bankrupt the family for a treatment that doesn’t even have a track record to prove its efficacy?

Of course, people will automatically tell you to ignore the cost and think about prolonging life. But it’s a stark reality that cancer treatment costs money. Lots of money. And it’s an equally stark reality that there are no guarantees even after you’ve invested the money. What a dilemma.

Anger Trumps Fear

I have a new theory about fear: the only emotion that’s stronger than fear is anger. This theory came out of my struggle, not with cancer, but with cockroaches. The only thing on this entire planet that I’m afraid of is cockroaches. Snakes, spiders, bats, no problem. But I’d rather have chemotherapy all over again than let cockroaches crawl over me.

Recently, our car became infested with cockroaches. I almost crashed the car a few times when I saw them scurrying along the dashboard while I was driving. Then one day, I’d had enough. I saw one crawling along the dashboard and I just slammed my naked hand down (luckily, I missed, cuz... YUCK!). Anyway, the point is that normally, I’d shudder at the thought of actually TOUCHING a cockroach. But I was so fed up with seeing them in the car that I just got pissed off and slammed my hand down without even thinking about it.

Then it occurred to me that my anger made me forget about how scared and disgusted I was by cockroaches. And I thought maybe the same thing could be said about cancer. Maybe I need to get angry about cancer so I won’t be afraid of it.

I might be afraid of being shot, but if someone with a gun were threatening my children, I’d be angry enough to face the gun. I think the adrenaline rush that comes with anger is strong enough to overcome the flight response and turn it into a fight response.

I’m actually angry about a lot of things. I’m angry when people lie, cheat, and steal and get away with it -- from the plumber who cheated me to the politicians and corporations that deceive the public. I’m angry when people show no courtesy for the needs or rights of others -- from drivers who don’t use turn signals to pharmaceutical companies that guard monopolies on drugs that save lives, but only for those who can afford it. I’m plenty angry about plenty of things. Maybe this anger will keep me fighting.

Some people say disease is caused by suppressed anger. If that’s true, then it’s time to unleash all my anger and get it out of my system.

If cancer were a giant cockroach, I might just run toward it with a battle cry and slide-tackle it to the death.

Hoping for a Better God

I have a friend who’s recently become a Christian and she introduced me to a woman who conducts Bible studies in people’s homes. I guess she’s like a traveling saleslady for God. I know it’s a pretty lame cliche that people facing death suddenly find God, but I’ve always been interested in religion and philosophy, so I thought I’d go along and meet this woman who my friend thought could answer my questions.

As with all my attempts to explore religion throughout my life, I was disappointed. The problem with talking to Christians is that they already believe in God, Jesus, and the Bible and they can’t get out of their world to talk to those of us who are a bit more skeptical. This Bible study woman’s train of logic went something like this: There is only one God and Jesus was his son and accepting Jesus as our saviour will save our souls. How do we know this? Because the Bible says so. How can we believe what the Bible says? Because it was written by “the hand of God”.

I find this circular logic extremely frustrating because there’s no way to argue someone out of it. It’s based on a premise that presupposes itself. No matter what I said, she couldn’t get out of this circle. She just kept backing up everything she said with one source: the Bible. It’s like saying that I know Santa Claus is real because the Easter Bunny told me so.

But one thing that became clearer to me after this three-hour conversation with the Bible lady was this: Christianity isn’t about having a world full of morally upright, kind people. It’s about a God that has created a world and wants to be acknowledged and appreciated for it. It’s not enough to live a life according to the values that are expounded by Christianity (love, kindness, generosity, etc.). If you want the rewards of Christianity (eternal life), you have to give God credit for what he’s done for us by believing he sent Jesus to save our souls. I have a problem with this. It seems a pretty petty and human trait to want this kind of validation and adulation.

I took a course in world religions in high school and I remember thinking that the one thing that all the religions had in common was they taught us how to live a good life and encouraged values that would make for a peaceful world. Where they differed was in the definition of a good Christian versus a good Muslim, Jew, Hindu, Buddhist, etc. This is all very simplified, I know, but the basic belief I got out of this was that it didn’t matter which flag you carried as long as you lived the values that were common to all. Like political parties. I won’t call myself a Democrat or Republican, but I’ll vote for politicians who believe in socially responsible behavior that will allow maximum good for the maximum number of people.

So where does this leave me if the Christian God turns out to be real? In eternal damnation, I guess, because the only thing that might get me to accept this “only-through-me” policy of the Christian God is fear and desperation. But I still have hope that God has been wrongly portrayed by the Christians and their Bible, and this almighty and benevolent being doesn’t exclude people simply because they don’t toe the party line as long as they live the party values. That kind of God is worth believing in and hoping for.

Documentary Filming

I took part in a documentary about breast cancer today. I was part of a support group meeting with other breast cancer patients. One woman in the group had full-blown Stage IV breast cancer. Unlike mine, which is only technically Stage IV because of imprecise definitions, hers has spread everywhere in her body -- bones, brain, lungs, liver. And it all started with Stage I cancer over seven years ago. She was treated for Stage I cancer and was declared cancer-free. But then she had a recurrence one year later and by then, it had spread everywhere. She’s had chemotherapy for the past seven years, plus brain surgery.

This would be a depressing story to hear, if not for the fact that I’ve met her and seen for myself that it’s possible to live with even Stage IV cancer. Not just live, but thrive. She looked fantastic -- a very healthy-looking, attractive mom of two teenagers. There was nothing to show she was a cancer patient -- she even had a full head of hair; a very cute bob cut. But she didn’t just look great, she exuded positivity and determination. She’d been through so much, but she was so energetic and optimistic in our discussions. If anyone has the right to tell cancer patients to stop moaning about their conditions and get on with life, she does.

She’s the first person I’ve met so far who also has Stage IV cancer, so I plan to keep in touch with her. I think I have a lot to learn from her.

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.