Getting Better... Or Worse...

The swelling has gone down even more, but the skin is still quite purple. I was able to raise my hand above my head and stretch my arm out completely without any difficulty for the first time since this mysterious swelling started ten days ago.

I know the infectious diseases specialist is going to attribute this reduction in swelling to the antibiotic drips she put me on, but I think this is not an infection, but bleeding caused by ripped scar tissue. The swelling had started improving before I was put on the IV drip, so I doubt it was the antibiotics.

Now I have a new problem. I was giving my right arm and chest muscles a rest so if this WERE ripped scar tissue, I could let it heal. So I was doing everything with my left hand, which was pretty hard since I’m right -handed. But now that I have a catheter in my left hand, all wrapped up in a bandage, I can’t use my left hand at all and have to do everything with my right hand, which I’m not supposed to be using. So treating it as an infection is making it worse for me if it turns out to be ripped scar tissue instead. Lordy, I just can’t win!

Infectious Diseases Specialist

I went to see the infectious diseases specialist that my reconstruction surgeon recommended. I was hoping that this doctor could say for sure whether or not this is an infection. She couldn’t. But she said we should treat it as an infection anyway and prescribed higher doses of antibiotics to be administered intravenously. So now I have to go to the hospital three times a day to be put on an IV drip for the next three days.

I told the doctor that the swelling had gone down quite a bit overnight and perhaps that’s due to my using the right arm and chest muscles less over the past few days. So maybe it’s ripped scar tissue after all and not an infection. I also pointed out that I haven’t had a fever the entire time this has been going on, but she said that not all infections are accompanied by fever. She said ideally, she’d like to put me in the hospital for 4-5 days and put me on IV drips of both antibiotics I’m now taking orally, but since I don’t want to spend my holiday in a hospital, we’ll try me on the 3-times-a-day hospital trips for just one of the antibiotics to start and see what happens.

So now I’m getting:
Augmentin - 1.2 gm by IV drip, three times a day.

This infectious diseases specialist knows infections. So she’ll treat this as an infection, whether it is or not.

A friend of mine told me about a Japanese saying: If the only tool you have is a hammer, everything looks like a nail.

Swelling Getting Worse

My radiation oncologist and reconstruction surgeon have both seen the CT scan films now. They showed me the fluid around the implant on the right side. But we still don’t know what’s causing it.

Meanwhile, the swelling and discoloration have gotten worse, and I have sharp needle pains all around the area. I’m still taking the second set of antibiotics -- day four now, as well as ibuprofen for pain.

The recon surgeon says he’s more convinced now that I ripped some scar tissue inside, which led to some bleeding and hence, the fluid build-up shown on the CT scan. He says infection is a less likely scenario, especially since it’s not responding to any of the antibiotics, but just in case, we’ll treat it as an infection. He told me to go see an infectious diseases specialist and booked an appointment for tomorrow.

The radiation oncologist said the discoloration of the skin (dark purple now) is “worrying” him. The fact that this is worrying him is worrying me.

There’s some good news: the CT scan shows the implant on the left, non-cancer side sitting pretty -- just as perfect a boob as anybody could ask for.

No Cancer in Lungs!

I saw my radiation oncologist today. We’ve gotten hold of a written report of my CT scan, which says no sign of cancer in the lungs. Very good news. The bad news is, the report says there has been damage to my right lung from the radiation -- at the apex, which was expected, but also in the “anterior middle lobe”, which was not expected -- at least not by me. I’ll have to ask my radiation oncologist later why the middle of my lung got zapped.

The report also says there’s fluid all around the right side implant -- under the implant as well as above it. Hence, the swelling. My radiation oncologist says he doesn’t know what’s caused this fluid build-up. My surgeon had said earlier that the swelling was edema (swollen tissue), NOT fluid, based on an ultrasound, but the CT report says it’s fluid. So which is it? The radiation oncologist says he’s not sure, based on the written report; he’ll have to see the actual films from the CT scan.

This still leaves the mystery of why I have this swollen, purplish-red mass on my chest where the cancer used to be. It hasn’t gotten any better since we switched antibiotics three days ago. This leads me to believe that it’s not an infection after all, since the likelihood that my body doesn’t respond to three different antibiotics is pretty slim. My pedestrian guess is that I ripped some scar tissue inside my chest with all the heavy lifting I did during our move. The fact that it’s only happened on the right side and I’m right-handed supports my theory.

We’ll have to wait to get the CT scan films, I suppose, and see what else it can tell us.

In Limbo...

I had my CT scan yesterday morning to see if the swelling in my chest is due to a recurrence of cancer. The radiologist rushed the results to my oncologist, who promptly went on holiday without telling me what the results were. Aaargh! She won’t be back until January 3rd!

I’ve tried calling my doctor on her mobile number, but she’s not answering. I can think of two reasons for not telling me the results:

1) It IS cancer, but there’s nothing that can be done about it until after the holidays, so she’s not telling me anything until after she returns in January.

2) It is NOT cancer, so there’s nothing to be done about it but keep on the antibiotics she’s already prescribed. No new course of action is needed so I don’t need to be told the results of the scan.

Or, she has no idea what it feels like for a cancer patient who is worried about a recurrence to wait for the results of a CT scan. How can this be?!?!?

Well, if there’s nothing that can be done now, there’s no point in worrying about it. I’ve accepted that it could be a return of cancer, and if that’s the case, I’ll go back on chemotherapy after the holidays. Going bald again might be better than this absurdly curly hair I have growing back now anyway. For now, I’ll just deal with the pain and discomfort of this mysterious swelling in my chest with antibiotics and pain relievers.

Four Doctors and a CT Scan

The swelling and discoloration of skin on my right chest have gotten much worse despite three days of antibiotics. I’ve been to see four doctors today: my medical oncologist (chemo doc), radiation oncologist, surgeon (who solved my last medical mystery), and reconstruction surgeon.

The two oncologists and one of the surgeons still think it’s most likely an infection, but the infection is under the implant so the antibiotics are having a hard time getting to the site. Apparently, this is because the tissue under the implant has formed a protective layer against the foreign body, so the antibiotics can’t penetrate to the infected area as well. Or... I’m resistant to this antibiotic. My oncologist has put me on two new antibiotics now:
Augmentin - 625 mg. twice a day
Dalacin C (Clindamycin) - 300 mg. 3 times a day

So the two oncologists are still treating it as an infection, but they say we need to consider it might be cancer again. The cancer cells might have come back in the chest wall muscle or in the skin above the implant, or both. So they sent me for a CT scan.

The surgeon did an ultrasound of both breast implants and said the swelling on the right side was edema (swollen tissue) and not fluid.

The reconstruction surgeon thinks it’s mostly likely ripped scar tissue inside the chest cavity from overexertion. That ripping might have caused bleeding and swelling. Or it could have caused an infection. If the infection invades the implant cavity, fluid would form around the implant and could break through the skin and ooze out. But this usually happens just after surgery, not two months after, as in my case. If this is what’s happening, I’ll have to have another surgery to remove the implant. If it’s just ripped scar tissue, it can heal on its own if I limit use of my right arm and chest muscles. But just in case it IS an infection, I should go along with my oncologists and take the prescribed antibiotics. He says it’s unlikely it’s a recurrence of cancer.

Bottom line: nobody knows for sure. Looks like an infection or ripped scar tissue or both. Very slight chance it could be cancer, but highly unlikely. But we’re all just guessing here. Let’s just treat it as an infection and see what happens.

Infection? Tissue Scarring?

After the big scare Tuesday, my oncologist put me on an IV drip of antibiotics the following morning. She said it was an infection -- it was red and swollen. The chest pains had stopped, but the swelling and redness got worse. She sent me home with a 7-day course of oral antibiotics but the swelling kept getting worse. Now the right side is bigger than the left and it’s bright red and quite painful.

The oncologist wants me to go back for another infusion of antibiotics this morning.

I also talked to my reconstruction surgeon yesterday and he said it could be an infection (cellulitis) of the soft tissue above the implant, which would be fixed with antibiotics. Or it could be an infection of the chest wall or tissue under the implant, which could require surgery to remove the implant. I don’t really get this -- why wouldn’t antibiotics get the infection no matter where it was? Or the third option is it could be damaged tissue from too much movement and heavy lifting over the past week. We’ve just moved into our newly renovated house, so I’ve been lugging heavy boxes, packing and unpacking for the past week. If it’s damaged tissue, the surgeon says I would just have to let the chest and arm rest and it would heal itself gradually.

The big relief is that neither my oncologist nor my surgeon has mentioned the possibility of it being a return of cancer. I did a Google search for “chest pain radiation breast cancer” and got a lot of information about the pain being a sign of cancer cells in the lining of the lung, chest wall, or rib area. That was the big scare. So compared to that scenario, a chest infection or tissue scarring seem like very welcome options.

Chest Pains, Scary

While I was mopping the floor today, I felt a sudden, strong chest pain on the right side -- the side that had the cancer and radiation treatment. The pain was so strong I couldn’t breathe properly -- every time I inhaled, I’d get a shooting pain deep in the chest. I waited it out for about half an hour, taking small, shallow breaths, but it didn’t get any better so I called my oncologist. I could barely get the words out because I couldn’t breathe and she was a bit alarmed and wanted me to meet her in the hospital emergency room. But I told her I thought it was just nerve damage from the radiation therapy and maybe I’d take some pain medication at home and see what happened.

I took a double dose of Aleve, an over-the-counter pain reliever, which is unusual for me because I don’t believe in taking pain relievers. I usually just try to sleep off any headaches or body aches. But those pills did the trick and within a half hour, I was able to breathe a little better, as long as I took only shallow breaths. And by the evening, I felt back to normal.

I’m just glad the pain was on the right side and not the left. If it had been on the left, I would’ve thought I was having a heart attack. The chemotherapy-Herceptin combo I had damages the heart, so I’ll always have to worry about my heart giving out. Although I think what happens to people with this drug combo is the heart just suddenly stops beating. Is that what a heart attack is? Not sure.

This was the first big scare I’ve had since my cancer treatment ended. I guess I can look forward to more of these as the long-term side effects of the chemotherapy and radiation creep up on me. Apparently, these side effects can pop up years, decades down the road, so escaping from them for the first few years doesn’t mean I won’t get them later in life. Just one more way that cancer stays with you forever.

One Year Anniversary

December 7. A date that will live in infamy. Roosevelt meant Pearl Harbor. For me, it was the day I was diagnosed with breast cancer, exactly one year ago today.

I’ve read that cancer patients have the highest rate of recurrence within the first year. I wonder if that’s the first year after diagnosis or after end of treatment? The often-quoted five-year survival rates are for five years after diagnosis. If it’s the same gauge for recurrence, then I’m doing pretty well not to have a recurrence at the one-year mark. So hooray.

In his book, Lance Armstrong said that after cancer, the biggest day of the year for him wasn’t his birthday or Christmas, or any other national holiday. It was the anniversary of his diagnosis. I can see why. Each year that I’m alive after diagnosis is a year that... well, I’m still alive.

Armstrong also said that living after treatment was almost harder than going through treatment. I feel the same. At least when you’re going through chemotherapy, radiation therapy, and surgery, you feel like there is active battling against the cancer cells. But after all that’s over, it’s just a waiting game to see if and when the cancer cells will recoup and come charging back at you. This is why things like my diet, vitamin supplements, and exercise are so important to me. These are the only ways I can actively fight the cancer cells.

I know some people think it’s silly to believe vitamins can help save my life. It’s true that there haven’t been any studies showing a positive impact of diet supplements on cancer patients’ outcomes. But it just makes sense to me that boosting my immune system with nutritional supplements will give my healthy cells a better chance of beating back cancer cells. I don’t need a scientific study to tell me that. There was no scientific evidence that diet and exercise had any impact on cancer until earlier this year. I thought that was a no-brainer as well.

I realize that no amount of spinach, pills, or exercise is going to keep me cancer-free. But they can certainly improve my chances of being able to fight again. Think of all the battles that would never have been won if generals said, “We’re outnumbered; we don’t have enough weapons; our men are malnourished and weak; we’re outflanked” and then turned around and went home. I’m sure they didn’t even have that choice. Neither do I. I can’t turn around and go home. There’s no home for me anymore. Pre-cancer life is gone forever. So I’ll stay and fight, no matter what the chances.

So happy anniversary to me. I’m still alive. What a feat it is just to stay alive!

Cold or Cancer?

I’ve had a bad cold for about a week now. It started off as a sore throat, then came body aches, loss of voice (hard one for me!), and a teeny-tiny fever (38 C). The body aches -- legs, back, head -- stopped yesterday, only to be replaced by coughing fits which leave me a bit wiped out. Each time I cough, my chest hurts, sometimes on the side where I had radiation, but mostly just beneath the sternum, right where the rib cage ends. And to top it all off -- thick, green mucus. So I’m guessing it’s a bacterial infection.

I haven’t been to the doctor, because I’m pretty sure she’ll say the same and put me on antibiotics. But I want to try to get rid of this myself, without more drugs. So I’ll wait it out a few more days and see what happens. The good news is, the body aches have stopped. I spent almost 48 hours after the Singapore Marathon in bed, hoping to sleep off the aches. It worked. So maybe the coughing and mucus will go away in a few days.

I’ve had two doctor appointments this week that I’ve cancelled -- one with my surgeon and the other with the reconstruction surgeon, both for follow-ups. But I thought I’d wait a few days to get over my cold first. Plus, I don’t want any more doctor bills piling up until we have more funds in the bank!

So here’s the thing about having something as innocuous as a cold. In the post-cancer world, a phlegmy cough could be a sign of fluid build-up in the lungs due to cancer cells growing in the lung lining. Aches deep in the leg bones could be cancer spread to the bones. Headaches could be brain tumors. Most likely, it’s just a bad, persistent cold. And even if it IS cancer spread, a few more days of waiting to see isn’t going to make the outcome any worse probably. Plus, it’s highly unlikely that cancer’s come back so soon. Although the highest percentage of recurrences happens in the first year... and tomorrow will mark my first year since diagnosis. Nope. Pretty sure it’s just a cold.

Singapore Marathon. Sort Of...

Today was the Singapore Marathon, which included a half-marathon and a 10-kilometer run. My Dragon Boat teammates and I signed up to do the 10K run, but we were supposed to walk the whole way. I’m not supposed to jiggle my expensive new boobs around for a few more months, so I signed up to walk.

We all started the walk together, but most of the ladies decided to run parts of it, and I thought I could do a bit of running as well. But my teammate, Kate, who’d just turned 66 years of age and had two bad knees was hobbling along the best she could. She said this was her birthday gift to herself -- to actually walk 10K. So I decided I’d walk with her the whole way. She was so proud of herself for finishing, because I could tell she was having a hard time toward the end. I was tempted to run the last few kilometers, but I figured I could do a real run next year.

I also met a blind runner from Kenya. He ran tied to another runner, who acted as a sort of guide. I guess the guide-runner had to hold back to allow his blind partner to keep up with him. It must’ve been hard on both of them. I met the blind runner, Henry, while we were collecting our race entry packs from the sponsor. We chatted about our kids (he has a 3-year-old boy), and how naughty they are. We joked and laughed about the kids. I only realized afterwards that I didn’t get to tell him how amazing I thought he was for running a marathon when he couldn’t even see. Think of the difficulty just keeping your balance when running blind! I’ve seen him in ads put out by the marathon’s sponsor, Standard Chartered Bank. Someone told me later that he wasn’t always blind. Before he lost his sight, he was a marathon record-holder. Wow. What sheer guts to keep running. His little boy is going to be very proud of him when he grows up.

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.

Cancer, Cancer, Everywhere

I really think there’s an epidemic going on. Not a week goes by that I don’t learn of yet another person who’s been diagnosed with cancer. I just learned a woman I know has been diagnosed with lymphoma. She has a one-year-old daughter. Her sister died of lymphoma when she was 21 years ago. My neighbor’s father was just diagnosed with pancreatic cancer. It’s inoperable and his prognosis is very bad. He’s only 56 years old. And four mothers at Josie’s school have had breast cancer. Considering the school only has about 50 families, this is quite a large percentage!

If people were coming down with a virus at the rate that people were getting cancer, I’m sure the World Health Organization would sound an alarm and label it a pandemic.

It seems so commonplace and unavoidable now while before I was diagnosed, it was a fairly rare disease for people over 60.

All this news of cancer lately has gotten me down. I feel like I’m surrounded by it. Corny as it sounds, it makes my heart feel a bit heavy. As I was thinking about this today, it struck me that people who live in war zones live with heavy hearts all their lives. Watching people around you get diagnosed with cancer might not be as soul-destroying as watching people around you get shot, bombed, starved, or massacred on a daily basis. I can’t imagine living with such fears day-to-day. Where does hope come from in situations like that?

Cancer?! Ha!

I met a woman today who’s had three different kinds of cancer over the past 25 years and she’s still going strong. She’s the mother of a friend of mine, and though I’d known her for a while, we’d never talked about her brushes with cancer. I hadn’t seen her for a few years and when she asked me how I’d been, I told her I was doing great but I’d been diagnosed with cancer. She immediately took me by the arm and sat me down with a big smile and told me the story of her fights with cancer.

First it was cancer in her nose. Sixteen years later, it was a brain tumor. Then three years after that, cancer in the lymph nodes on her neck. She’s been cancer-free for five years now and her attitude is, “Cancer? Ha! I can kick its butt!” She’s 61 years old and as lively and sprightly as anyone my age.

What struck me about her was that as she was telling me about her cancer experience, she spoke like a soldier bragging about how many enemies she’d fought off. She almost spat out the word “cancer” as if it were something to scoff at. I suppose if I’d battled and won against cancer three times in a quarter of a decade, I’d be claiming bragging rights as well!

My Cancer, Your Cancer

I spent the last two days accompanying a newly diagnosed breast cancer patient to the hospital for bone, liver and lung scans to see if her cancer had spread. When the bone scan radiographer was talking to her before the scan, she referred to “C-A” instead of cancer. I wanted to jump in and say, “You mean CANCER, right?” I want to take the stigma out of this word that makes some people look at you as if you’re a goner.

But later on, my friend the patient told me she appreciated that the radiographer didn’t say the word “cancer” to her. She’s afraid of the word. I, on the other hand, want to say the word to everybody and anybody. At restaurants: “Can you make sure there’s no cheese on that? I’m avoiding dairy products because I have CANCER.” At the supermarket: “Can you show me where I can find organic foods? I’m trying to avoid chemicals because I have CANCER.” At any public place: “May I offer you this pamphlet on how to do a breast self-exam? You see, I have breast CANCER and I hope to help save other people.” CANCER, CANCER, CANCER. I figure the more we hear it and the more people we know who are up and about with cancer, the less frightening the word will be.

People don’t drop their voices to a low whisper to say someone has *diabetes* (shhhhh...). So why should cancer be so scary? Granted, in the old days, people got cancer and pretty much died within months. But it’s different now, especially with breast cancer. People live for decades with cancer.

But what I learned from my friend is, not every cancer patient is like me. I have to respect that some people with cancer can’t face hearing it said out loud. Each patient has a different attitude toward her cancer because we are, after all, individuals with different tastes and views toward everything.

So my cancer is a normal everyday thing that anybody can talk about, even joke about. My friend’s cancer needs to be treated with a bit more respect, awe, and fear.

Hard, Cold Reality

A friend of mine asked me recently if I knew anyone who’d actually died of breast cancer. I was happy to say I didn’t. I didn’t even know anyone indirectly who had died of it. But now I do. Well, sort of.

I have a book of cartoons titled, “Cancer Made Me a Shallower Person” by Miriam Engelberg. She was diagnosed with breast cancer in 2001. She was treated, then had a recurrence. She chronicled her cancer treatment in this book of cartoons, showing a very funny but real side of cancer. I thought she really hit the nail on the head with her cartoons, addressing a lot of issues that I’d gone through.

She just died a week ago from her cancer. Now I’m reading the book again to see what stage she was, what treatment she got, and other details to compare to my own case. I know it’s a bit morbid, but I can’t help myself. According to the cartoons, she didn’t have any cancer in her lymph nodes and her tumor was only 1.5 cm. That means her cancer was only Stage I and she died anyway! She had just published her book of cartoons earlier this year. She was funny, positive, full of hope, from what I could tell. I think she was also very careful about her diet and was taking a lot of anti-cancer supplements. What in the world went wrong?

If I ever have a recurrence, I know exactly what I’m going to do. I’m going out for the greasiest, juiciest bacon cheese burger I can find. Would you like fries with that? You betcha! And make those chili cheese fries! Plus a pint of ice cold lager, followed by a warm hot fudge brownie with vanilla ice cream on top. Then I’ll die of heart disease and people can say that cancer didn’t get me in the end! Ha ha!

Celebrity Cancer

I found a Web site that lists famous people who’ve had breast cancer. The list is compiled by category: movie stars, musicians, royalty, politicians, business executives, etc.

I was astounded by how many celebrities had breast cancer that I’d never known about. Of course, everyone knows about Kylie Minogue and Sheryl Crow because they’ve both spoken quite openly about their cancer.

But not Cynthia Nixon from “Sex and the City”, U.S. Supreme Court Justice Sandra Day O’Connor, all three original Charlie’s Angels, Olivia Newton John, Koo Stark (soft porn starlet who scandalized the British royal family), Adolph Hitler’s mother, and on and on. And almost all of the women on the list were either still alive or died of something other than cancer.

Granted, they could have died from other things as a result of their cancer treatment, but cancer wasn’t listed as the cause of death. And a lot of these women lived ten, twenty years, even longer after their diagnoses. This is really significant, given that medicine has come a long way in the past few decades. So if someone diagnosed with and treated for cancer 20 years ago can still be alive, then someone who’s diagnosed now has the advantage of medical advancements to live many more years than that.

Of course, it’s not all roses. The Latin Grammy winner, Soraya, died of breast cancer at the age of 37, just seven years after diagnosis.

But I’m keeping close tabs on Kylie, Sheryl, and Lance Armstrong. This month marks the 10-year anniversary of Lance Armstrong’s diagnosis for testicular cancer. They say if you haven’t had a recurrence in ten years, you can consider yourself cured. I hope that’s true for Lance. Not that I know him or think he’s a kind-hearted soul, but because his survival means so much to cancer patients and survivors all over the world. The day Lance Armstrong dies, cancer patients everywhere will be mourning -- not just for him, but for themselves.

Fear and Prevention

I saw a documentary film tonight about a woman whose mother, grandmother, great-grandmother, and aunt had breast cancer. She had a young daughter herself and at one point in the film, she said she wasn’t as worried about passing on breast cancer genes to her daughter as she was about passing on the fear.

I don’t think fear is necessarily a bad thing. Fear is just heightened awareness, and as long as it’s tempered with reason and positive attitude, fear can be a productive force. Because I’ve had breast cancer, Josie’s risk of getting it has increased. Should she live in terror that one day she will get breast cancer? Of course not. Should she be aware that she is at risk and that there are some things she can do to minimize that risk? Yes, definitely.

Of all the factors that raise our risk of getting breast cancer, the one thing we have any control over is lifestyle choices - diet, exercise, rest, stress, and exposure to hormones. If Josie is made aware of how these factors can influence her risk for breast cancer, she can choose to take some precautions -- drink less alcohol, eat less sugar and hormone-injected foods, exercise regularly, and maybe even have children earlier than I did.

As her mother, I feel it’s my job to educate Josie about lifestyle choices and breast cancer risks. I don’t need to tell her about cancer until she’s much older, but for now, I need to lay the foundations of a healthy attitude toward diet. That’s the only thing I can do for her so when I’m gone, she’ll have this in place to protect her, even if it’s just a little bit.

Of course, she can eat well and exercise all her life and still get breast cancer. Just like I can drive carefully and obey all traffic rules and still get killed by a runaway truck. We can’t control our environments, but we can certainly take control of ourselves and do the best we can with that.

The worse thing about having cancer is loss of control. Well that, and the dying bit. But I can’t do much about that. What I CAN do is take care of my body so it can have the best chance of fighting cancer and recovering from chemotherapy and radiation. I could forget about my special diet, supplements, and exercise, and just carry on with my life, waiting for cancer to get me someday. But I choose to fight it with whatever weapons I have so I can feel like I’m doing something.

Am I afraid that cancer will come back? Of course I am. I’m an optimist, not a deluded fool. The chances that cancer will come back and kill me are very high. Am I going to give up and wait for the inevitable? Of course not. I’m going to do everything in my power to fight it. And I expect my daughter to do the same.

Numb Hands, Chest Pains

When I woke up this morning, I couldn’t feel my hands. They were numb and stiff -- the way your foot feels when it’s gone to sleep after you’ve sat on it for a long time. Except I’d slept flat on my back and not on my hands. I tried to wiggle them and after a few seconds, I was able to get a tingly sensation in the fingers, then the rest of the hands and finally, the tingling and numbness went away and my hands felt normal again. Maybe this is the neuropathy that chemo sometimes causes. But why’s it happening now, months after the chemo stopped?

Later on in the day, I began to feel sharp pains on the right side of my chest, deep inside, toward the back. I’m guessing it has to do with the radiation I got on that side. I wonder how long these side-effects last.

I suppose I should call my oncologist and tell her about these symptoms, but I keep getting these little quirky things from time to time and I can’t get into a panic each time it happens. But what if the cancer has spread to the lungs? I’m trying to remember whether I’ve had a chest X-ray recently to check the lungs and my chemo brain can’t even remember that.

It’s funny how I go from being super careful about every little thing that might be wrong in my body to just waving it away as another false alarm. I guess this is what living with cancer is about -- some days you have cancer and really feel it in your life, and other days, you just can’t be bothered even thinking about it.

Faith and Cancer

Someone gave me an audio CD of a woman narrating her story about having breast cancer. The disk had the title, “I Survived!” and had photos of the woman, before, during, and after chemo hair loss, all smiley and happy. I was looking forward to listening to this personal account of someone who seemed so confident and happy, she must have some wisdom to impart.

She introduced herself by saying that in 2003, she learned about the “weakness of the human body...” And I expected her to say, “and the strength of the human spirit”. But no. Instead, she said, “the strength of God”. I was disappointed. Another testimony by a religious person, talking about the glory of God.

I listened to the entire CD anyway, about the woman’s fears about chemo and how having God by her side kept her going. How God was using her to help others, because she then went on to counsel other cancer patients. How God saved her life and kept her from feeling alone throughout her worst moments.

Why can’t I have that faith? It must be comforting to believe that there is a God out there who is always with you and is looking out for you. A personal God would have come in handy on those days I sat in hospitals, waiting to have my body injected with radioactive dye and put through a tunnel to see where the cancer cells were. I felt very alone and scared. It would have been nice to have a God with me, but frankly, it would have been even better to have a friend or my husband with me. They would have done the job just as well, if not better. I can’t hold God’s hand and joke with him to relieve my fears. That’s the kind of comforting I needed.

I wish I could have this absolute faith that people have in their religions. Faith is an impossible thing to pin down. By definition, it can’t be proven or measured. It’s blind, instinctive gut feeling that cannot be rationalized. So if you don’t have it, how do you get it? I have some faith in science and medicine. But I don’t think that’s all it will take to beat my cancer. I have faith in my own strength and will, but that’s not all it will take either. I have faith in the goodness of people and the world in general. But that’s not enough to make me believe all is well in the world. How does anyone have 100%, absolute faith in any one thing?

I wish I could get a lobotomy to slice out the part of my brain that rationalizes and questions too much. I wish I could be hypnotized and wake up with complete and absolute faith in God. I WANT to believe in something as powerful and beneficent as God is supposed to be. But how do I MAKE myself believe that? Is there a pill I can take?

I should be a test for anyone planning to be a preacher. If you can’t convert a dying cancer patient to Christianity, then what chance have you got with perfectly healthy people who aren’t facing death and looking for a way out?

Herceptin, Stitches, Dodging Bullets

Three doctor visits today: Oncologist for my Herceptin treatment, surgeon to have my stitches removed, and gynecologist for an ultrasound of my ovaries. Turns out ovarian cancer is far scarier than breast cancer -- by the time screening finds the cancer, it’s already Stage III or IV, with a five-year survival rate of about 40%. I just started to write, “Thank goodness I have breast cancer instead”, but then realized I have Stage IV breast cancer, with a five-year survival rate of 20%. I keep forgetting. I guess that’s a good thing, though.

I now have to be very careful about ovarian cancer because having had breast cancer raises my risk for ovarian cancer significantly. Sigh. The body’s full of potential cancers. The world is full of potential dangers. Life is full of potential deaths. So when we live to a ripe old age, I think we should celebrate that we’ve dodged all the bullets.

I will welcome every birthday that comes now, not with a sad, “I’m ANOTHER year older!” but instead, “Hey! I’m still alive!” I’ll hit the big 40th next month so I’m very much looking forward to it. I’m looking forward to my 50th and 60th birthdays as well. I’m looking forward to being a toothless old granny in a rocking chair, laughing at my little grandchildren, toothless and gummy, in diapers, and drooling just like me!

Doctor Without Heart

I went to the hospital today to visit the mother of one of Josie’s schoolmates who has just had a lumpectomy for Stage I breast cancer. While I was there, her doctor came to see her. She asked him about the results of her surgery and the histology report that he had received from the lab. Typical questions: “What grade was the tumor? What does Stage I mean? Is it curable?" His answer: “You don’t need to know. Just leave it to me.”

She tried asking him over and over again, in many different ways, for details of what the histology report said and whether her cancer was curable. At one point, she asked, “I read on the Internet that the survival rate for Stage I is 90-97%. What do you think?” His answer: “Don’t read the Internet. A little knowledge is a dangerous thing.”

I was watching my friend grasping for words of hope, even a hint of something positive from her doctor, or at least some basic information and facts about her condition. But instead of addressing her questions, he rolled his eyes, waved his hands in front of him as if deflecting the silliness of her questions, and treated her as if she were an ignorant child. I was shocked by his dismissive and disrespectful attitude.

After about 15 minutes of her trying desperately to get him to tell her something, he finally said, “I can guarantee five years.” That left my friend thinking she had five years to live. Before he’d arrived, she’d been so upbeat and positive, saying, “Thank God it’s only Stage I!” She went from being relieved and hopeful to feeling despondent, thinking she could have only five years left.

I was so angry at the doctor, but I couldn’t interfere. All this woman needed was reassurances, even plain facts (Her chances of survival ARE in the 90s. Stage I breast cancer IS completely curable.). He didn’t need to tell her how many years she had to live. She wasn’t asking for that. He could’ve just said she had an excellent chance of beating her cancer and she had reason to hope for a normal life span. Why were these words so impossible for him to say? What was wrong with this doctor?

I plan to write a letter to him and to the medical association about this exchange I witnessed later, when my friend is no longer under his care. I don’t think he should be allowed to cause anyone else such anguish again. He might be a good surgeon. He just has no idea how to treat a patient as a human being. If he’s a good surgeon, then he should just do the surgery part and let another doctor handle the patient contact. If it were up to me, I wouldn’t let that man near a cancer patient again.

The Sisterhood

I had lunch today with three other expatriate women who’ve had breast cancer. There were supposed to be two more, but one couldn’t make it because of work and the other was too sick after her chemo to join us. So that’s five expat women who’ve had breast cancer in the last few years that I know personally. And I know many more women here in Singapore as well as overseas -- maybe 30 in total now. It seems almost everyone I know has had breast cancer or knows someone who has.

Maybe it’s like when I was pregnant -- suddenly, I was seeing pregnant women everywhere, whereas before, I never noticed them. Having breast cancer is like being pregnant in another way -- it creates a sisterhood. When I was pregnant with Josie, I read dozens of books on pregnancy and infant care. I went to prenatal classes and regular doctor visits. I did research on the Internet and became an expert on babies and pregnancy. But the thing that helped me the most was talking to other women who’d had babies themselves. When my water broke, I didn’t call my doctor; I called my best friend who’d had two kids herself. Talking to my single, childless friends about what I was going through was distancing for me and boring for them.

Same with cancer. It was helpful, even fun, to talk about what I was going through with other women who’d had the same experiences. We traded tips on the best oncologists in Singapore. We compared notes on reconstruction options -- implants or back tissue? Maybe tummy tuck and boob job in one? And we can joke about our situation. Sometimes, I make a joke about my cancer or about dying and non-cancer people look uncomfortable or scold me for being so distasteful. Just like when I was pregnant. Pregnant women can joke with each other about the burps and farts that go along with carrying a baby. It’s pretty rude to talk about that stuff with the civilian population.

I’ve never been interested in support groups. When I was pregnant, I was asked to join a new mothers’ support group but I didn’t. After my cancer diagnosis, I made a few feeble attempts to join a breast cancer support group, but I figured it would just be a bunch of women sitting around getting emotional. I didn’t want that. I wanted information. The ladies I saw today are like me. We just want the best information available to give us the best chance of living as long as we can. And we all have young children so we can understand the additional stresses that go along with having cancer with young kids (Will I live long enough to see them through their teen years? Do I even WANT to? Ha ha.)

During our lunch, I got a phone call. It was from the mother of a girl in Josie’s school. She was calling from the hospital -- she’d been diagnosed with breast cancer and had just had a lumpectomy. Eerie coincidence. Just as we were talking over lunch about how to help other breast cancer patients, along comes a newbie to Cancer World. I’m going to the hospital tomorrow to see her. She also has two young children, about the same ages as mine. She’s also under 40. I hope I can be of use to her. Something good has to come out of my cancer.

Stitches and Strangers

Went to the doctor today to get my stitches out, but he says the wound hasn’t completely healed yet so they’re staying in for another week. Rats. But I don’t want him to take the stitches out too early and have the wound open up again, so this is a good thing. That’s my spin.

For the past week, I’ve been keeping my arm movements to a minimum because of the pain, but mostly because I don’t want to risk overworking the arms and getting fluid build-up like I did after the mastectomy. Normally, I’d pick up 10 shopping bags all at once or carry both kids, one in each arm. But the other day, I asked the taxi driver to get my shopping bags out for me and take them to the elevator. And I’ve asked store clerks to wait while I unloaded my shopping cart in slow motion.

Each time, I explain, “I’ve just had surgery, so I can’t lift heavy things or move very fast, so please bear with me.” I want to go on and say, “I’ve had reconstruction surgery because I had breast cancer and lost both breasts. So you’ll have to cut me some slack.”

I know some people don’t want to go around telling everyone they have cancer. I used to think I was one of those people. But now I want to tell everyone, even strangers, about it. I want to say, “This isn’t the real me. Normally, I am strong and agile and would never let anyone help me lift my shopping bags. And normally, I have long straight hair, not this kinky wiry stuff that makes me look like I’m wearing a helmet made of animal fur. Normally, I could drink you under the table and dance on bar tops all night long. I could eat a big juicy steak and not this namby-pamby rabbit food. Normally, I wouldn’t be so annoying when ordering food in restaurants (‘no meat, no dairy, no MSG, no sugar please’).”

I want people to know that the person they’re seeing is a weak imitation of the real me. I think knowing a person’s story helps us be more tolerant and sympathetic.

I once saw a kid throwing an almighty tantrum in a supermarket and his mom did nothing. I thought she should be disciplining her child, or at least controlling him in public places. But now I think, maybe that kid was autistic or he was having a seizure? Or once, a seemingly able-bodied woman got on a crowded elevator on the second floor of a hospital, leaving a woman with an infant in a stroller to wait for the next elevator. I wanted to scold that woman for being so inconsiderate and lazy. But what if she had just undergone surgery and couldn’t walk up and down stairs?

What if people are looking at me and thinking, “What a lazy, spoiled brat! She can’t pick up her own shopping bags?! And what is UP with her hair?!! Doesn’t she have a mirror in her house?!” Maybe I should wear a sign around my neck, “Cancer patient. Under construction. Inconvenience regretted.”

Out with the Drains! Again!

The drains came out today. This is the 4th time I’ve had these plastic tubes coming out of my chest carrying blood and fluid from the chest and into plastic barrel-shaped containers. It’s pretty amazing, really, that you can stick a tube of plastic inside a person’s body to drain blood out and then you just yank on the tube and about 20 centimeters of plastic tubing comes sliding out of the body, leaving a hole in the chest that you just plug with a bandage.

It’s also pretty amazing that you can lop off a body part and the body can go on. Just think of all those muscles and nerve endings and blood veins that get chopped up in the process. And somehow they manage to reconnect and heal. Seems the human body is capable of withstanding quite a lot. Add to that all the medical technology now available, and there’s real reason to hope that one day there will be a cure for cancer. Meanwhile, there’s a lot of help from science and medicine to prolong life with cancer and make the fight less painful. So hooray for scientists, researchers, and doctors who are looking for a cure and fighting the disease day-to-day.

If I could start my life over again, I think I’d go into oncology. I’d probably cry all the time for my patients and be very poor giving all my money away to patients who can’t pay for treatment, but I’d feel like I was doing something useful with my life.

I wonder if I haven’t given enough thought to what I’ve been doing with my life. What if I’d been told at the beginning of my adult life, say, age 20 or so, “You are hereby given an entire planet and 50 years to do whatever you want with it. Go forth and use those 50 years the best you can!” It’s like one of those reality TV shows where contestants are given a set amount of time to accomplish a task. Would I map out a plan? Would I set goals and work toward them? Do other people do this? Do they sit down and decide, “I’ll finish law school by 23, get married by 30, have kids by 35, retire by 55, see the Eight Wonders of the World by age 60, etc.”

If we were given one year to accomplish a task, we’d certainly map out a plan to best succeed at accomplishing the task. But if given 50 years? And what sort of task would we set for our lives? Enjoy life and leave a beautiful corpse? Touch people around you and leave your memory in their hearts? Or something less esoteric like set up a foundation to educate the poor. Amass the biggest collection of rare Indian coins in the world? Are people planning ahead or just bumbling along? Should I be planning something big?

Reconstruction Surgery

I came home from the hospital today after a one-night stay following reconstruction surgery. It was supposed to be day surgery, but I was in too much pain after the procedure to sit up in bed, so they had to put me on a stretcher and into an ambulance to get me from the surgery clinic to the hospital across the street. I felt like a bit of a wimp that I couldn’t just get up and walk out. A friend of mine who had breast augmentation surgery said she woke up with no pain at all and just walked out of the clinic. That’s what I expected would happen to me. But when I tried to sit up, there was such a sharp, stabbing pain deep in the center of my chest that I couldn’t even catch my breath. I thought maybe something had gone wrong with the operation because I hadn’t expected it to hurt at all.

The most disappointing part of the experience was the helplessness I felt because the doctor and nurses had no clue about what I was feeling. The doctor never even asked me about the nature of my pain or where it was located. Instead, HE was telling ME where my pain was, saying the right side had undergone radiation so it would feel constricted, etc. I tried to tell him that the pain was deep in the center of my chest and NOT on the radiated side, but because I could only speak in a whisper due to the pain, I couldn’t make myself understood and no one made any effort to bend down to my level to listen to what I had to say. And one nurse in particular kept moving my body forward while I desperately tried to tell her in as loud a voice as I could (but I could only manage a whisper) that she was causing me a lot of pain. Tony was standing behind her and I tried to catch his eye to tell him not to let that nurse touch me again, but he too, seemed unable to hear me or understand me. I felt completely helpless and voiceless and they could do whatever they wanted with me because I had no power to stop them.

This experience has made it abundantly clear to me that if I ever have to undergo any kind of serious medical procedure again, it will NOT be in Singapore. And this was just a simple surgery. What if I’m ever really incapacitated? What if my condition deteriorates and I get to the point where I can’t actually speak or move my own body? I’m worried that no one would know what I needed or wanted. I’m glad I’ve filled out a Living Will, but what about before I get to that point? What if I’m just too weak or sick to express my wishes and nobody can think of a way to listen to me and see what I need? All I needed today was for someone to put his ear right next to my mouth so I could tell him what the pain was like, where the pain was, and what I wanted him to do. I couldn’t speak loudly enough to say all that. I was so frustrated and angry -- that was worse than the pain itself.

Hope in a Boat

“Hope in a Boat” was the name of my Dragon Boat Racing team. We came in second in the Plate Finals for the inaugural Breast Cancer Dragon Boat World Championship Race. Our fellow teammates in the other Singapore boat, “Paddlers in the Pink”, took first in the Plate Finals. There were teams from all over the world, including South Africa, Canada, U.S., New Zealand, Australia, Malaysia, Hong Kong, U.K., and Italy.

It was quite a festive and lively sporting event. There were paddlers with their entire families who’d flown out to support them. Upbeat dance music played in the background, people broke out into spontaneous dancing, teams were doing their chants, kids running around, pink balloons flying everywhere, women greeting each other with hugs and squeals. It was like a big outdoor party with hundreds of people. Such a happy atmosphere. Then you think, “Hey, all of these women are here because they’ve had breast cancer.” I looked around at the faces -- most were in their 50s and 60s, but when I saw young women in their early 30s with little kids, I felt a bit sad and angry. Angry at what? I don’t know. Just angry that these little kids had moms with breast cancer.

We had one man on our team who was taking his wife’s place. She died earlier this year. He was one of our most enthusiastic paddlers and cheerleaders. I think Dragon Boat racing must give him some comfort after losing his wife, but I also think how sad it must have been for him that his wife didn’t make it for the big race. I’ve never seen him with anything but a smile on his face though. What an amazing man.

All the women at the race were so warm, cheerful, friendly, and energetic. I wonder if they were always like this, or if their personalities changed after their diagnoses. I always hear about people who are more optimistic, appreciative, happy after they’ve been through cancer, but I don’t think cancer’s changed my personality at all. I was pretty cheerful and optimistic before my diagnosis. I’d love to see a study on this aspect of cancer -- do people’s personalities change after cancer? And why hasn’t mine? Why hasn’t cancer completely altered my life and personality? Why hasn’t cancer been a mind and life-altering, earth-shattering experience for me? Am I missing something?

Meeting Expectations

I had my 3-weekly Herceptin treatment today, so I expect to be up all night. Insomnia is one of the side-effects of the drug. So I guess I’m not superhuman enough to be immune to ALL side effects, after all.

I ran into a fellow breast cancer patient at the oncologist’s office. She said she was feeling depressed and reacting very badly to chemotherapy. I thought she looked and sounded pretty strong so I told her so. I told her I have faith that she’ll come out of this with her strength and spirit in tact. I don’t know if she thinks I’m just being nice, but I don’t think anyone should underestimate the power of encouraging words.

I’m a skeptic about everything, so when friends and family say encouraging things to me (some of it cliche, some of it not even that convincing), I smile, thank them, and tell myself they’re just trying to be nice, but they’re optimistic because they have no idea just how bad my prognosis is or how bad it could get. But after hearing so many people tell me how well I look and how sure they are that I’ll beat cancer, my skepticism starts to wear thin and I find myself thinking that I’ll survive just to meet everyone’s expectations. Everyone tells me I’m going to beat it. I can’t let them down, can I?

A friend sent me a story about a man who suffers one misfortune after another and each time, he says that he faces a choice -- either wallow in sorrow and anger, or put a positive spin on it and get on with life. He chooses the latter and overcomes every horrible thing that comes his way with optimism. My friend mass-mailed this story to a bunch of people and added a note saying, “This is what Shin shows us everyday.” How can I be any other way when this is what people expect from me? And when I start to feel down, I tell myself that I can’t disappoint them. Forget about how I feel; what about all those people who are expecting me to be strong, cheerful, and brave? The thought of letting everyone down is sometimes worse than my own fear and misery.

I think we often meet the expectations of people around us, be they high or low. If your teachers and parents think you’ll amount to nothing, chances are you won’t. If they’re convinced you’ll be a success and convince you of it, then chances are you’ll be a success (however you define that term). I think if my doctors kept telling me I wasn’t going to last and my family and friends acted like I was dying, I wouldn’t last as long. But it doesn’t seem like anyone who knows me is thinking I’m going to die any day soon, even those close friends who have done the research and know what the statistics say. They might just be putting on the optimism for my sake, or for their own sake. But even then, it’s working. Faking optimism slowly becomes true optimism, until you realize one day that you don’t have to fake it anymore.

Holiday from Daily Life

We got back yesterday from a 9-day family holiday to Gili Trawangan near Bali, which was planned as a trip to celebrate the end of my cancer treatment.

A few times during the holiday, I wondered if I were making the most of this trip. I’d be lying alone on the massive canopied day bed on the terrace, feeling the cool breeze and listening to the waves on the beach, and wonder if I were supposed to come to some cathartic realization about the meaning of life, my mortality, the nature of the universe. Instead, I read novels and mindless magazines while munching on peanuts.

One morning, I woke up just before sunrise and thought I should go for a solitary walk on the beach to see the sun come up and have an introspective moment to ponder and reflect on my life. Isn’t someone in my situation supposed to have deep thoughts and take stock of her life -- the past, the future, hopes and dreams and such? I felt like I’d be forcing it. Plus, it was a bit chilly. So I stayed in bed and dozed off again instead.

Am I wasting precious time? Should I be searching for meaning, for God, or something bigger than my pre-cancer understanding of life? Or do I save that for when I really think I might die? Because these days, I’m too busy stressing about our house renovations, family finances, whether the kids are getting a balanced diet, whether I can fit all my activities into my days. I don’t have time for introspection. Maybe I’ll put that on my TO DO list for when I’m incapacitated and no longer have any choice but to lie in bed with nothing but my thoughts, whenever that may be.

Hope and Delusion

I sometimes wonder if I’m confusing hope with delusion. According to statistics, I have a 20% chance of being around in five years. Sometimes I’m convinced I’m in that 20%. Sometimes I ask myself if I’m living in denial. But day to day, I’m living with hope because I’m not acting like somebody who has less than five years to live, and no one is treating me like someone whose days are numbered.

We’ve just bought our very first house and are doing massive renovations. I’ve started training for a marathon, and since I figure it will take several years at least to be able to actually finish a marathon, I think this is fairly optimistic. I even bought some new clothes finally after several failed attempts (selecting items, then putting them all back thinking I was wasting money since I wouldn’t be around to wear them very long).

I’m not consciously thinking that I’ll live to be 50, 60, or 70. I wonder if people who are 70 or so look at the average life span for their demographic and say, “According to statistics, I only have five more years to live.” Of course these people know they won’t live forever, but if there’s nothing wrong with them, do they think that maybe they’ll just carry on indefinitely until something DOES go wrong with their bodies? Shouldn’t I live like that and assume that the cancer’s gone so I’ll live indefinitely until something happens later to tell me otherwise?

What Kids Know About Dying

I had a strange and sad conversation with Josie tonight as I was putting her to bed. It started with our usual routine with me telling her I’d love her forever.

Me: I love you and I always will. And if I’m not with you, where will I be?
Josie (tapping her chest with her hand): In my heart.
Me: That’s right. I’ll always be in your heart. Always and forever.
Josie: But what if you’re dead?
Me (long pause): I’ll still be with you in your heart.
Josie: But what if you’re dead?
Me: I’ll still be in your heart. I’ll always be in your heart no matter what.
Josie: But if you’re dead you won’t be able to get up.
Me: But I’ll still be in your heart. No matter what.

I’m not sure what a three-year-old knows about death and dying, but Josie has mentioned death in the usual context for kids -- the flower will die if you pick it off the bush; if you run into the street a car will crush you and you will die; kill the mosquito so it won’t get us. I don’t know if she would have said these things tonight if I didn’t have cancer or if she senses that I’m in danger of dying. Hard to tell. But it was a pretty matter-of-fact conversation -- not at all emotional. I was just stunned by her question. I think I handled it pretty well. I hope so.

Death and Panic

There’s been a lot in the news today about the terrorist attacks in the U.S. five years ago. As I listened to interviews of victims’ families and friends, I tried to imagine what it must have felt like to be standing at the window of an office in the World Trade Center tower after a plane had hit it. Would I accept that death was imminent and calmly resign myself to my fate? Would I run around in a blind panic trying to get out somehow? Would I pre-empt fate and jump out the window?

And what about the people on the plane that crashed into a field instead of its intended target? The passengers fought the hijackers and forced the plane down before it could get to a populated city and kill more people. Would I have tried to kill the hijackers to save more lives, even if it meant sure death for me? Would I have clung to hope that I’d get out of it alive?

I can’t imagine what mind-boggling terror and panic those people must have felt, knowing for sure they were going to die any second. They didn’t even have time to think about what was happening to them.

I know my days are numbered, but I have time to keep living a normal life, and even have the hope that I’ll live to a pretty decent life span. There are times I imagine what it might be like if my cancer comes back and no treatment will fix me. There I’d be in my hospital bed, knowing I had only hours or minutes left. I think I might panic. I’d want to cling to my kids and not let them go. But for their sake, I know I should put on a brave face and smile and leave them with a happy memory of my last moments. But knowing I’d never see them again, knowing they’d have to grow up without me, knowing that I was heading to a great unknown, I think I’d panic. I hope, though, that I’ll have the sense to jump out the window like some of the people in the World Trade Center towers did -- figuratively, of course.

Why Me? Why Them?

I never asked myself, “Why me?” after I was diagnosed with cancer. I don’t know if it was because I had so much else to think about, but the question just didn’t come up. Much later, people asked me if I asked myself “Why me?” But instead, I found myself asking, “Why not me?” I’m in a low risk category for breast cancer, and there’s no history in my family (I’ve read only 20% of cancers are genetic anyway), so I had every reason to ask why this was happening to me. But it just seemed an irrelevant question.

Once in a while, I learn of someone’s death -- someone who makes people around him happy and contributes something valuable to his community or society at large -- and I start to think, “Why him?” And then I think of other people who contribute nothing but misery to the world around them and think these people should die instead.

When I was in my twenties, I heard about a man at the local church who had died of cancer, leaving behind a wife and two very young children. I was single and childless at the time, working as a journalist but not the kind of journalism that makes a difference in anyone’s life. And I found myself thinking that if I could trade places with this man, I might do it. I didn’t have anyone who needed me as much as this man’s wife and kids needed him. Sure, I had family and friends who’d cry a lot and miss me, but that’s different from having kids who need a parent or a spouse who needs a partner in life.

Now that I have cancer myself and I have two young kids, if someone offered to trade places with me, I might accept. Sounds terrible, and I’m pretty sure I wouldn’t be able to actually let someone else die in my place, but I think I should do it for my kids.

If I were single with no kids, I think I’d be more willing to die. I’ve had a pretty good life. I’ve been very lucky, and I can say I’ve had my fair share of happiness and accept that I should exit the stage now.

But having two young kids changes everything. I need to stay alive long enough for them to know their mother. Even if it’s just in their memories, they need to have a mother. And I need enough time to make those memories. They shouldn’t have to grow up without their mom. So back to the original question... not “Why me?” but “Why them?”

[I sent this comment to Leroy Sievers, who is keeping a Blog on his cancer on the NPR (National Public Radio) Web site.]

First Post-Treatment Scans

I had my first post-chemo, post-radiation scans today to see if there’s any cancer left. I’m all clear. I had a chest X-ray to check the lungs and an abdominal ultrasound to check the liver. In 6 months, I’ll have a PET-CT scan to check lungs, lymph nodes, adrenal glands, and liver, plus a bone scan to check the bones. This next round of scans is more thorough, but they can’t do it too frequently because these scans expose me to more radiation. The X-Ray exposure is so little it’s negligible, the doctor said, but the PET-CT and bone scans expose me to quite a bit more radiation. That’s why she’s going to alternate the two sets of tests every 6 months so my exposure to each will only be once a year.

I’d read that 40% of the time that breast cancer spreads, it spreads to the brain. My doctor says that’s not quite right. She says spread, or metastasis, to bone, liver, lung are more common than brain, but for HER2 + patients like me, there’s a 10-20% chance of relapse in the brain as the first site of metastasis. That’s why doctors don’t scan the brain regularly. But she says if I want, I can have an MRI periodically. She also said I need to go to an OB/GYN at least every 9 months. I think that’s a bit lax, actually. From what I’ve read of the risk of ovarian cancer for breast cancer survivors, plus the fact that I had a cyst in my ovaries in one of my earlier scans, I should go get checked at least every 6 months, maybe even every 3 months.

I don’t want to be a hypochondriac, but given the advanced stage of my cancer I don’t want to take any chances. If I’d been MORE of a hypochondriac when I first felt the lump, I’d have a much higher chance of survival right now. That’s a mistake I’ll have to live with. I wouldn’t mind living with that for a very, very long time.

I’m relieved that my scans were clear. But I’m also aware that scans don’t show everything. My PET-CT scan after the first 3 cycles of chemo showed no sign of cancer in my body. My doctor said I was in “complete remission”. I was elated and amazed at the effectiveness of the chemo. Then I had surgery and the tissue they removed turned out to have cancer in it after all. Very microscopic cells, but there they were. If they’d been left in, they’d have spread and I’d have a recurrence. If that’s what “complete remission” means, it’s not entirely reassuring.

It’s frustrating that these scans that costs thousands of dollars, expose you to dangerous levels of radiation, and look and feel downright scary actually can’t tell you for certain that you’re cancer-free. They couldn’t even pick up a lump in my neck that a doctor could feel with his hands. Sometimes I wonder if I should just skip the scans, give my body a break from all that radiation, and just hope for the best. What if I’m actually INCREASING my risk of secondary cancer with all this radiation exposure? I’m certainly not at a loss for things to worry about.

Reconstruction Revisited

I went to see my reconstruction surgeon today for a post-radiation, pre-op consultation. He examined me and said the skin is healing well and I can have reconstruction done in early October. My options are to use implants, use tissue from my back, or tissue from my tummy. The last option is out, he said, because I don’t have enough fatty tissue there to transplant. Surprising, since I’m not asking for a D cup or anything even close, I thought I had enough flab there to cover me for a modest little A cup. But I suppose I should be happy I don’t have enough fat for even an A cup! I might have a similar problem with my back. Plus, if we used tissue from my back, I’d have yet more scars, not to mention mobility issues. I might not be able to swing a golf club anymore. Not that I can now, really.

I’ve decided to go with implants -- I don’t want any more of me cut up than is necessary. Also, it seems a bit weird to take bits from one part of my body and put it somewhere else. I’d be like a Frankenshin. Although if I’d been asked before all this happened whether I wanted fat from my tummy moved up to my breasts, I’d have jumped at the chance. But then I wouldn’t have thought about the cutting up of body parts, the risks, the side effects, etc.

So there it is. After all my adult life of wishing I had bigger boobs, I’m finally getting implants -- just to have the same size I always had. When I first learned that I’d have to have a mastectomy, I thought that at least I’d finally get to have the boobs I’d always wanted and go for a B cup at least. But it turns out it’s not quite that simple. Getting breast reconstruction is very different from getting a boob job. There are greater risks, the results aren’t as nice, and there are painful side effects. And people have told me implants only last 10-15 years. But according to the stats, I’ll last much less than that.

Now my goal is to outlast my implants. Gotta laugh about that.

Chest Pains

Last night, I felt sharp pains deep in my chest, on the right side. So deep, it almost felt like it was toward my back. When I coughed or tried to pop my ears by holding my nose and breathing out, the pain was very strong. It also hurt a bit when I strained my right chest area -- by bending or lifting my arm a certain way. I woke up with the same pain this morning, so I called my oncologist’s office and the nurse told me to come in. By the time I got to the doctor’s office, the pain had stopped. Figures.

The doc said it wasn’t my heart, because the pain was on my right side, and the lungs sounded fine as well. She said the pain was probably due to nerve damage from the radiation.

I’m relieved that it’s nothing to worry about, but I also know that something like this could happen again and it could be serious. I’m scheduled to have a chest X-ray and liver scan next week when I go for my Herceptin treatment. That’ll be the first big post-treatment test to see if cancer’s come back. I can’t wait to have that test so I can be reassured that cancer cells aren’t quietly spreading through my body. But these tests aren’t foolproof, I know, so I’ll never have complete reassurance. Just one teeny tiny microscopic cancer cell left behind is all it takes to get the cancer colony started again. And then I’m back where I started, only with a body that’s already been damaged by chemo and radiation.

I just read about a woman undergoing chemo who peed on the grass in her backyard. The next day, she noticed a bald patch in the grass where she’d peed. The chemo drugs inside her body were so toxic that her pee killed the grass on contact. The grass didn’t come back on that patch for an entire year. Yikes. And to think this is the best weapon we have to fight cancer. This and zapping with radioactive rays that cause cancer themselves. Not a very fair fight.

Dragon Boats and Ticking Clocks

My second day of training with the Dragon Ladies -- I think that’s what we should call ourselves. There were two expat women today -- older ladies in their 60s, I think. I’m actually surprised at how many younger women there are in the group. I’d say half the women are in their 30s or 40s. It seems breast cancer patients are getting younger and younger. Maybe because people are being more vigilant about their breast health and are being diagnosed much earlier. That would also explain why the survival rate is getting higher.

We spent quite a lot of time getting the boats into the water and didn’t start rowing until 8:30. I got there at 7:30 a.m. I was a bit antsy to get started as soon as I got there, but we had to wait for everyone to arrive, catch up on chit-chat, eat bananas, get the boats, and do warm-up exercises.

I find myself feeling impatient and hurried quite often. Yesterday, I had a list of errands to run and when I got behind schedule, I became quite frustrated and annoyed. I even found myself walking at a super-fast pace, like a wind-up robot on high speed. Cancer survivors say you should slow down, take it easy, and appreciate life instead of hurrying through it. But how can I slow down if I have limited time to do all the things I want to do?

I had a very bad experience with a Reiki master earlier this year at the beginning stages of my treatment. The Reiki center would tell me to come for a training session at 6:00, then I’d be standing around waiting for an hour. Meanwhile, I was losing time away from my kids. When I pressed them to tell me when we were going to start, the Reiki lady told me to be patient, we could take our time. I was so frustrated by then, I snapped, “I don’t have time to waste! I’m dying of cancer!” I never went back after that. I realized it was stressing me out, rather than relaxing me as Reiki was supposed to do. Maybe they were bad Reiki practitioners -- I’ve heard some of these people are phonies looking to make a quick buck. Or maybe I just wasn’t ready at that time.

But I still struggle with the dichotomy -- slow down and appreciate what time I have left, or hurry up and do everything I want before the clock runs out?

Could Cancer Make Me a Better Person?

I think sometimes I should REMIND myself that I could die of cancer any day. It would change my behavior for the better. I lost my temper with Josie today. I just couldn’t get her to do anything I asked. She wouldn’t get out of her pyjamas, get dressed, eat her breakfast, get ready for school. This has been going on for weeks now. I got so impatient and frustrated with her, I yelled at her and put her in her room.

Later, it occurred to me that if I knew I only had days or weeks of life left, I wouldn’t care that she didn’t finish her breakfast or was late for school. In fact, I’d probably keep her home from school so I could spend all my time with her. So should I be doing that, I wonder? Probably not. I’ll be around long enough that she can still have a normal life, but what if we get to the point when I know I won’t last much longer? Do I then disrupt her life so that I can spend more time with her?

Anyway, if I remind myself that I have limited time with her, I’d have more patience and appreciate even the frustrating things about her. That applies to many other things in my daily life. I get angry about petty things that a dying person shouldn’t give a damn about -- bad drivers, shoddy goods, rude and selfish people, unreasonable rules.

Maybe the problem is that I don’t have any symptoms. Because I don’t feel or look sick, I forget that I could die of cancer very soon. So I forget to appreciate every moment, stop to smell the roses, and all the other cliched things that people who have come close to death say they’ve learned -- a renewed appreciation for life. I don’t have it. I think I appreciated life plenty before I got cancer. But maybe it would help me to think that I could die very soon -- but in a positive way, to make me more mellow, patient, and easy-going. So that I don’t care so much about petty little daily life things.