Good News/Bad News

The good news is, the chemo’s working again. The bad news is, that means the tumors were growing again. In fact, they must’ve started growing again as soon as my last cycle of chemo was over on November 28.

When I told my oncologist today that the pain had subsided since I went back on chemo two days ago, she said it was “worrisome”. I guess she was hoping that the chemo would have no effect on the pain, so there would still be hope that the pain was NOT due to tumors growing again but to some other cause.

My doctor says maybe my chemo (Navelbine) and Herceptin work synergistically so that Herceptin alone isn’t enough to keep the cancer cells at bay; I need to have the two together. She says she’s had many patients with these two drugs but has never seen tumors grow back so quickly as soon as the chemo stopped. She consulted with a colleague who said the same.

This means I need to be on chemo continuously, along with the Herceptin, because as soon as I go off it, the tumors grow again.

So now I stay on Navelbine + Herceptin until my cancer cells become resistant and the Navelbine no longer works. When that happens, I move on to another chemo drug. My doctor says there are only two side effects from being on Navelbine long-term: 1) cancer cells become resistant, 2) sensory neuropathy. Sensory neuropathy is nerve damage to extremities, so it causes a tingling sensation and sometimes pain in the fingers and toes, hands, and feet. My doctor says this damage is usually reversible after a year or two.

The real worry here is that my cancer cells are growing faster than my oncologist, her colleague, and my surgeon (whom I also consulted) have ever seen in all their years of practice. So I might not last the average two years of survival for metastatic breast cancer patients. It’s not looking good, but I’m holding out hope that something will happen in the world of cancer research before my time runs out.

Meanwhile, I need to plan my days more wisely. And I think I’m extremely lucky that I’m still able-bodied and functioning as normal. I’m really going to appreciate this while I still can.

Back on Chemo

Since my last Blog entry, I’ve been to see my oncologist twice. The first time, she was perplexed and didn’t know what to do, so she just said to wait a few days and see what happens with the pain. Today, she was even more perplexed because the pain had gotten much worse. I can’t even turn my body around to reverse the car into our parking space without feeling a shooting pain in my right chest. I couldn’t go for a run tonight because the up and down motion made my chest hurt. I can’t pick up the kids or reach for the top shelf without pain.

My doctor said that in twenty years of treating cancer patients, she’s never seen a case where cancer has come back so quickly and tumors have grown so fast. I told her I must be really special. I got a laugh out of her anyway.

She said she could run some tests – blood test, CT scan, X-ray, MRI, anything but PET/CT, since I just had one last month and it’s too dangerous to have another so soon. The problem is that none of these other tests picked up my cancer before, so she didn’t think they’d show anything. She suggested a “low-dose spiral CT scan”, which has a much lower dose of radiation than a PET/CT. But then she called the radiologist and learned that the radiation level is about the equivalent of thirty chest X-rays. Doesn’t sound low-dose to me! I don’t want to be outshining the Christmas trees this season with all the radiation in my body.

She said my symptoms were a much better indication of what’s happening inside me than any of these tests, so based on my case history, she decided I should go back on chemo. So I had Navelbine again, along with the Herceptin I was scheduled to get. She sent me down to a heart doctor for an echocardiogram first, to see if my heart could take it. The echo was normal. Yay, my heart’s still good.

I go back to the doctor in two days to report on whether the pain has disappeared. If so, then the chemo’s working. If not, the chemo’s not working or it’s not even tumors we’re dealing with. So then we do the low-dose spiral CT scan, which won’t be conclusive because it could show up nothing even though I have tumors growing. And then what?

All this two days before I’m supposed to get on an 18-hour flight. I certainly don’t want to die in an airplane, thousands of feet in the air. If I have a medical emergency during the flight, do they divert the flight to get me to a doctor or are they not allowed to change their flight path even to save a passenger’s life? Maybe I should look into the airline’s policy on this before getting on the flight.

Maybe I should pretend this is happening to my twin in a parallel universe and I should just live in my universe and worry about real things like getting Christmas presents ready and packing for our trip to the U.S.

Couldn’t cancer take some time off this holiday season?

Chest Pains Again

For the past several days, I've been feeling pain on my right side, similar to the pains I'd felt in December last year, which turned out to be a recurrence. A dull, thick-ish pain deep in the right side of the chest (the lung?), plus stiffness and tightness around the entire right chest and arm area. When I breathe in, the pain gets worse and feels a bit sharp and piercing. Before, we attributed the pain to nerve damage from radiation, only to find out from the PET/CT scan in August that it was a recurrence of cancer. This is why I’m so worried. I think the tumors are growing again.

On the one hand, I can't believe the cancer could've come back so soon after my last chemo session on Nov. 28. On the other hand, everyone, especially my oncologist, was surprised and alarmed when we learned I'd had a recurrence so soon after my treatment ended last time. So these cancer cells might be incredibly aggressive and/or... we just ended my chemo as my cancer cells were developing resistance to it so that the chemo isn't really working anymore anyway.

Tony thinks I should get another PET/CT scan now before we leave for the U.S. next Monday. But I've already had two PET/CTs this year. These things are dangerous. I could wait until the four months my doctor recommended comes up, but if this is another recurrence, the cancer would've spread a lot by then.

I could just get a chest X-Ray, but I had a chest X-Ray and CT scan last December when the pains started and they didn't pick up anything wrong.

The sister of a lady I know just died of metastatic breast cancer last week. She'd had Stage II cancer a few years ago and had a recurrence earlier this year. She carried on working full-time, and when my friend saw her several weeks ago, the lady was looking very, very fit and healthy. And two weeks later, she was gone. Just like that. That could be me. I'm looking and feeling fit and healthy now, but like her, I could rapidly deteriorate in two weeks' time and be gone, just like that.

So there's a bit of me that's panicking, thinking about all the things I need to get done. I need to start writing letters to the kids. Is now the time to do that? I've got so much to do before we leave for the U.S., I can't even think straight! And if my condition deteriorates as quickly as that lady, I’ve got no chance of getting ready because I’d be spending my last two weeks in and out of consciousness. For the last few days, she was in a coma. Imagine that. Going from fit and running around town doing Christmas shopping one day, to lying in a coma less than two weeks later.

I’m going to see the doctor now. This is getting a bit scary. I suppose now’s the time to be brave.

Deja Vu

Exactly two years ago today, I found out I had cancer and that very same night, I went to my daughter’s school Christmas concert. I was filming the concert so that I could make a DVD to give out to all the other families.

I remember being focused on getting good shots of the kids on stage and making sure the angle was right. I remember trying to push the idea of cancer out of my mind and concentrate instead on all the cute children in their costumes. I remember at one point, amid all the hustle and bustle and din of excited kids, I felt like the scene around me was something I had to say good-bye to soon, so I was savoring it and felt like crying about it at the same time.

It just so happens that this year’s Christmas concert also fell on December 7. Tonight, it was my son’s Christmas concert instead of my daughter’s. Again, I filmed it for the school. But on this night, the second anniversary of my cancer diagnosis, I didn’t think about cancer or having to say good-bye.

In some ways, I feel like I’ve come a long way. Scans, chemo, surgery, radiation, more scans, more chemo, more surgery. And I’ve gained a great deal of knowledge about cancer and nutrition.

In some ways, I feel like I haven’t moved at all. I have cancer again. So that hasn’t changed. I still haven’t done all the things I wanted to do. I feel like I haven’t done enough with the two years I’ve just had, and my time’s running out.

And just this week, someone else died of breast cancer. She was fit, active, working full-time up until two weeks before she died. It all happened so fast that her family hardly had time to process what happened.

It makes me wonder if I should be doing more to prepare my family and friends. Are they ready to see me go in two weeks’ time? What about me? Would I be ready to go in two weeks’ time if it came to that?

In a way, dying of cancer has its advantages over dying suddenly of a heart attack or car accident. I have time to get ready and say my good-byes.

On the other hand, having that time can be agonizing. Sometimes, I just don’t know how to spend the time.

Chemo Catch-22

A friend of mine went to a chemo session with me last week and had some questions about my treatment. I thought I’d post it on my Blog because several other people have asked me similar questions. I though this would be of special interest to my fellow breast cancer patients.

Question: When you did your last MRI they said that a lot of the tumors had either disappeared or got smaller, so after your last chemo treatment, why do you have to wait 4 months to have another MRI? Is the chemo so long-living that it will take up to 4 months to take effect? Why can't you have your MRI in say, 1 month after today or 6 weeks after, then you'll see that there are only tiny little dots left, (if any) and then blast them again with a day's chemo? I don't understand the delay. Is it because you are having the Herceptin? But the Herceptin doesn't blast the cells, only acts as a buffer, right? So surely it would be best to eliminate all those cancer cells for good, then have the Herceptin, when you know they have gone, because otherwise the cancer cells can replicate and you won't even know. I'm confused. Why don't they do the scan sooner than 4 months?

Answer: I’m getting the MRI for the brain only and the PET/CT for the entire body. The MRI just shows the anatomical, physical view. A PET/CT scan shows a metabolic view. That means an MRI shows what’s there, e.g. an abnormal growth, while a PET/CT scan shows what’s happening, e.g. cancer cells feasting on sugar and rapidly growing and multiplying. So a PET/CT scan can show more than an MRI. It can pick up abnormal cell growth before the cells become large enough to become a visible tumor.

But even then, the PET/CT won’t pick up anything smaller than a pea. No scan can pick up microscopic disease. This is why doctors never say a patient is “cured” of cancer. They say there is “no evidence of disease”, or N.E.D. There is no way to tell if you’ve eliminated the cells for good. Ever. Cancer cells can lie dormant for years and years and one day, the right set of conditions will come together and those cells will become active again. This is why diet, exercise, and avoiding toxic chemicals in the environment are so important. You can never know what will trigger cancer cells to reactivate. What we DO know, however, is that many of the foods we eat and the chemicals we expose our bodies to provide stimuli for cancer cells to grow.

I still need to get an MRI of the brain, however, because for some reason, PET/CT scans miss some brain tumors while MRIs pick them up. I haven’t found a satisfactory explanation of why this is, so if any of you find one, let me know.

They can't do the PET/CT scan so regularly because it's radioactive. To do the scan, they inject a radioactive glucose solution into my veins. Too much of that and I'll develop MORE cancer. It's a real Catch-22. I need to have these radioactive scans to help me fight cancer, but these scans in turn give me MORE cancer. We have to weigh the risk of more cancer against the risk of dying of the cancer I already have.

I can't have non-stop chemo because then the chemo would kill me. We need to give my body a chance to recover from the chemo before we zap the cancer (and healthy) cells with more chemo. Another Catch-22. The chemo that can extend my life can also kill me. You see why oncologists have such a hard job? They have to find just the right chemo to save the patient without killing him. In fact, some people believe that cancer patients die from the treatment, rather than the cancer. There’s no way to prove it one way or the other.

Herceptin works in two ways: 1) It slows down or stops my particular kind of breast cancer cell (HER2+) from growing, 2) It tells my immune system to target my HER2+ cells. So Herceptin doesn’t directly kill the cancer cells the way chemotherapy does. But unlike chemotherapy, Herceptin is fairly targeted so it doesn’t damage my healthy cells as much as chemotherapy does. That’s why I can and will be on Herceptin for the rest of my life.

Thanks for asking the question. Please ask more questions, about anything at all.

Marathon Madness

My brother-in-law, David, just finished his first marathon in 4 hours and 16 seconds. I’m so impressed with him. My friend, Hugh, just finished his first marathon in 5 hours and 15 minutes. I’m equally impressed with him. David’s fretting about those 16 seconds. Hugh’s fretting about not coming in under his target time. To me, the time has nothing to do with why I’m so impressed with these guys or anyone else who runs a marathon.

I’ve always admired endurance athletes. Not for their skill or physical strength, but for their mental strength and discipline. We’re all born with the bodies that we’re given and we can train and exercise to shape those bodies into what we want. But there’s a point where the body lets us down (in my case, with cancer). That’s when the mind and heart take over.

If you ever need evidence of the strength of the human spirit, willpower and determination, go stand near the finish line of a marathon.

I watched the marathon runners come in yesterday. Some were sprinting with their last ounce of strength (after four straight hours of running!). Some were hobbling or limping toward the finish line, fighting leg cramps or muscle breakdown. One man was bleeding from the face and arm, but still jogging along. Another guy was pushing his partner in a wheelchair and as we cheered them on, the woman in the wheelchair took a deep breath and brought her arms down on those wheels to “sprint” toward the finish. I saw little old ladies and men who looked like they were in their 50s and 60s – some so thin that I couldn’t believe they could even stand on their stick legs, let alone run 42 kilometers with them. I saw overweight runners who looked like they were carrying sacks of potatoes around their waistlines. And all this in 32 degree heat and 80 percent humidity.

I was so amazed and awed by these runners and what it took for them to get that far, I decided then and there that I would try to run a full marathon next year. I don’t care how long it takes me (although I hope I finish before the street barricades come down); I just want to finish it. I’ll walk, jog, run, hobble, crawl probably, but I’ll finish it. I’ve always wanted to finish a marathon before I die, so I’m going to do it before I’m no longer able-bodied.

I know that long-distance running is NOT good for the body. It's a completely unhealthy thing to run marathon distance all in one go. I've seen an X-ray view of what happens to the body during a run – it’s incredibly violent force we put on our joints. And for 42 kilometers!

And contrary to popular opinion, it's not good for the heart either. The human heart isn't meant to beat at such a fast rate for such a sustained period of time. Remember the heart surgeon/veteran marathon runner who died during the New York City marathon several years ago? He had a heart attack! And those who died in the Chicago marathon this year – they blamed it on the 32 degree heat. Well, it’s 32 degrees in Singapore every day! And the Olympic marathon runner who just died a few weeks ago – he was only 28 years old!

So no, it’s not healthy. But I’m going to do it because I want to prove to myself that I can overcome my physical shortcomings with my mental strength. I won’t be stupid about it, though. I’ll train all year and be prepared. I’m not going to beat cancer just to die from running a marathon. That would be silly.

Race Day

I did the Singapore Marathon 10 kilometer run today. Last year, I walked it with an older lady from my Dragon Boat team and finished in about two and a half hours. This year, I ran it on my own. I wanted to finish in under an hour to beat my 10K run-time of one hour and five minutes, which I did in October. But I think I finished in one hour and three minutes. I won’t get the official time until later.

It was tough-going. There were so many runners, it took me about 15 minutes just to get to the starting line. And even then, there were hoards of people in front of and behind me and I found myself dodging people, running up and down curbs to pass them, going sideways to get around the other runners. I think that added some minutes to my finishing time.

The best part of the run was at the end when I started to sprint toward the finish and people were cheering along the route. It felt so good that after I finished, I stood near the finish line and shouted out encouragements to the other runners until I was hoarse. I think some of them picked up speed when I shouted out at them, “Looking good! You’re doing great!”

I’ll bet if someone did a study, you’d find that runners and other athletes perform better when there are people cheering them on.

I’ve decided that next year, I’m running the full marathon. I was going to work up to a half-marathon next year and then a full marathon the year after, but I might not be alive by then. And even if I am, maybe I’ll be too sick to do any running. So I’m going for it next year.

A friend of mine suggested I raise money for charity when I run. So I’ll be hitting up all my friends and family to donate money to cancer research when I do my marathon next year. I’ve always felt awkward asking people for money or making sales pitches of any sort, but I’ll put my feelings aside for a good cause. Besides, I’ll only be doing one marathon in my lifetime.

Not Ready for Death

I was in a bookstore today and remembered a book someone had given me as a gift many years ago, “Tuesdays with Morrie” by Mitch Albom. I read it back then, liked it, then passed it on. I couldn’t remember much of it so I thought I’d buy it and read it again. I couldn’t find it in the “Literature” section, so I asked a clerk for help and he lead me to the book – in the “Death and Dying” section. After taking a copy off the shelves, I looked to see what else they had in the Death section.

There was a book titled, “Motherless Daughters”, written by a woman whose mother had died when she was about twelve. I skimmed through it. The author said a girl needs to have a mother – to share her excitement when she has her first crush on a boy, to console her when the relationship breaks up, to plan her wedding with her, be there when she has a baby, etc.

She said that losing her mother had a profound impact on her life and changed everything for her.

I thought about all these things and began to feel so sad for Josie. I thought of the things I wouldn’t be able to do for her. I started to feel for her as I would for a lonely, abandoned child.

But then I thought, my mother never did any of those mother things with me and I turned out just fine. So I left “Death and Dying” and went to the children’s section of the bookstore. Some cute picture books about rabbits and princesses put me right again.

I’m obviously not ready for Death and Dying. And neither is Josie.