PET-CT Scan Results

The good news is that there STILL doesn’t seem to be any cancer in the brain, bones, or liver. The bad news is that there is lots of cancer in the chest – the film negative showed my body in white and there were black spots all over the chest – sternum, under the arm, on the collar bone, over the lungs. There were so many black spots, I couldn’t really count them.

But my oncologist said it’s not IN the lungs, just in the soft tissue NEXT TO the lung, so it just LOOKS like it’s in the lung on the film. But later, on the phone, she said she’s not certain that it’s not in the lung. I don’t even know if it matters whether it’s IN or NEXT TO the lung. If it’s cancer, it’s cancer, right? But I assume it’s harder to treat if it’s in a major organ like the lung rather than in soft tissue and lymph nodes, which is where she thinks mine is.

So I need to have chemo again. Now I have to do a lot of research into the different chemo drugs available and decide which I want to take. What a huge responsibility. It’s good to be given the choices and the power to decide my own course of treatment, but in some ways, it would be nice to be a kid again and just let somebody else take over completely and make all the tough decisions for me.

I was prepared for and expecting the worst, so I didn’t take the news as badly as Tony did. I had a gut feeling that this was going to turn out to be cancer.

Before we got the results today, I joked that after having spent S$7,300 on these scans, they’d better find something so I can feel like I got my money’s worth. That’s a lot of money to spend just to be told that there’s nothing there. But now I’d gladly pay that much money and more for there to be nothing.

MRI Results

The good news is that there doesn’t seem to be any cancer in the brain, bones, or liver. The bad news is that the radiographer thinks I have “fairly solid lesions” and soft mass in the right lung, plus fluid in the lining of both lungs. His report said it’s probably cancer and needs follow-up. My oncologist, who reviewed the films and report with me, said she doesn’t think it’s the lung so she called the head of the radiology department and had him take a look. This guy, in turn, said no, that bit on the lung is not cancer, but look here at the chest wall. Now THAT looks worrisome.

So I’m scheduled for a PET-CT scan for the whole body. It just figures that the ONE part of the body that the MRI isn’t that accurate about is the place where I have something funny going on. And after my expensive decision to do the MRI in order to avoid radiation exposure, I have to do a PET-CT scan anyway. This is the one where they inject radioactive glucose solution into your blood, then put you inside a tunnel machine to pick up this radioactive tracer to see where it goes. The tracer goes anywhere in the body where there are active cancer cells because sugar is food for cancer. The glucose dosage is only one four-thousandth of a teaspoon of sugar, so imagine how bad sugar is for cancer. I’ll be avoiding sugar even more now.

The thing about all these scans is… I’ve read about studies that show there’s no difference in survival outcomes for patients who have intensive screening and those who just have clinical exams every three months. But that makes no sense to me. If they find more cancer in me, isn’t it better to find it early, before it spreads too much to treat? I think these studies are flawed. Common sense tells me the earlier you find it and treat it, the better your chance of survival. I’m going to ignore these studies. Just like I’m going to ignore the survival statistics. I’m not going to be dead in five years. I just won’t do it.

Whole Body MRI

I ended up canceling the chest X-ray and just doing the whole body MRI. I didn’t have time for the X-ray and I thought I could do it later if the MRI showed something suspicious.

I don’t think I’d recommend this scan to anyone. It was no fun, and could be downright scary to some people, I think. I’d seen photos of the machine and read the pamphlets that tell you how it’s done, but nothing prepared me for the actual test.

They had my lie down on a very narrow slab – not a big deal since it’s the same for all the other scans, plus radiation therapy. It was the next bit that was a bit of a shocker. They put these rib-cage like braces down the entire length of my body, pinning me down like an insect. There were 5 pieces – one for the crown, one for the face and neck, upper chest, lower chest, then one huge one for the entire lower body. I felt like some sort of freak show, trapped inside this sci-fi skeletal frame prison. And the radiographers hadn’t even prepared me for this. They just started pinning various parts of my body down with these things, without so much as an explanation of what they were doing or what these things were.

The test took about one hour inside the 60-cm wide tunnel, with various loud noises ranging from security alarm to fog horn to jackhammer. I had headphones with music on but the machine’s sounds are so loud, even Jimi Hendrix on full decibel wouldn’t have drowned out the noise. I had to lie perfectly still the entire time. It’s hard to lie completely still for an hour even in the comfort of your own bed, without the giant rib-cage, narrow tunnel, and loud banging sounds in your ears.

There were several parts where they told me to hold my breath, but they didn’t tell me for how long. Twenty-five seconds can seem like a long time if you’re not told ahead of time you’re going to be holding your breath for that long. I started counting after a while so I knew when the end was nearing, but this is something they should tell the patient. Not only are you putting a patient inside a tiny tunnel with a jackhammer, you’re telling her to hold her breath. Indefinitely!

Note to self: Write a feedback letter to the radiology department telling them they have to communicate better with patients about this test. I can just see some of my fellow cancer patients panicking during this test.

The good thing about this test, though, is that there’s no radiation involved and it covers the bones, liver, and brain. It’s not so great for the lungs though. It also costs a lot -- S$4,100. I think it’s much more expensive in the U.S. Well, I guess we’ll see Monday when we get the results, just how good a scan this is.

Annual Scans

I’m scheduled for post-treatment scans tomorrow. It turns out I’m a bit behind schedule, but better than never. I’m booked for a full-body bone scan, chest X-ray, abdominal ultrasound, and brain MRI to check for cancer in the bones, lungs, liver, and brain. But I’ve been researching on the Internet and have found out that a bone scan exposes the body to radiation levels equivalent to 200 X-rays. Not good, since radiation causes cancer.

Plus, a bone scan doesn’t differentiate between a tumor, infection, or arthritis so if the scan showed something, I’d still have to have an MRI or PET-CT scan anyway. So I’ve decided to cancel everything but the chest X-Ray and get a whole body MRI instead. MRIs don’t show cancer in the lungs very well so I’m still going to have the X-ray.

I also found an article about a survey of doctors asking them how much radiation was in a bone scan. Fewer than 5% got the answer right. Most of them thought it was the same as a few X-rays. I asked my oncologist the question and she said “double an X-ray, and with today’s improved radioactive tracers, maybe even less”. So doctors are recommending bone scans to patients and telling them the radiation exposure is “minimal”, but they actually don’t know how much radiation is in the scan. What an eye-opener. Good thing I discovered that BEFORE the scan.

I had a week to research these scans but I did it all just tonight, like cramming for an exam, which I did plenty of in school. But you’d think if it came to saving my life, I’d be a bit more diligent.

That’s the thing about living with cancer, post-treatment. You can think about it all the time and be super vigilant and time and schedule all your scans and tests like you’re planning a military campaign. Or you can pretend to have your life back and believe cancer’s in your past and just forget about follow-up tests. You can prepare for its return or assume it’s gone forever. It’s hard to tell what part of the fence to sit on.

The Bad Guy

I came back from a month-long vacation to learn that a friend of mine, a fellow breast cancer patient, had died while I was away. I had just had lunch with her a few weeks before I went away. She looked fine when I saw her. Her name was Julie. She was the woman that two other friends of mine, also breast cancer patients, were afraid to be around because I think they knew she wasn’t doing well. Her cancer had spread to major organs and it seemed like the doctors couldn’t do much more for her.

I recently saw a special TV program about people living with cancer. An oncologist was interviewed on the show about telling patients the truth about their condition and he said with an almost exasperated tone, “People die of this disease.” It seemed like he was frustrated that people didn’t want to face this truth and his saying a patient was going to die made him the bad guy.

When I heard about Julie, I thought, “Wow. People DO die of this disease.” Most don’t. But no matter what we do to fight this thing, some of us will die.

Then I look around at some of the women I’ve met since I was diagnosed. I have one friend in particular who is not doing well. I’m afraid to spend too much time with her because I don’t want to steal what little time she might have away from her family, but also because I don’t want to see somebody else die.

I wonder if other cancer patients look at me that way. Do they think, “Hmmm. Stage IV. Not much of a chance she’ll be around for the long-term. Better not invest too much time in her, since she might not be around too much longer. “

Then there’s the reaction of the other women who were with Julie during her last days. I think they were somewhat traumatized. I think when cancer patients see other cancer patients die, they come face-to-face with their own deaths. Cancer patients have death looming over them enough as it is. They don’t need to see it played out in front of them, almost waiting for their own turn.

Again, I think this whole cancer experience is much harder on the people around us than it is on us. And knowing that just adds to our own anxiety.

Why is Death So Taboo?

Why don’t people think about or talk about their own death? When I talk about it, people say I’m being morbid or pessimistic because I’ve had cancer. Not so. I used to think about my death even before my cancer diagnosis. I don’t dwell on it or get consumed by it, but I think it’s something worth thinking about. After all, we’re all going to die someday. Don’t people have any curiosity about what it feels like to die?

I wish I could talk about it with friends or family without being accused of pessimism or getting the scolding, “Stop it! You’re being too negative! You’re going to live to a ripe old age!” I’m getting a little annoyed by this attitude. I may indeed live to a ripe old age, but then again, I may not. But my chances are not 50/50. They’re weighed against me such that it’s completely reasonable for me to think and be curious about the most likely scenario. I think this falls under one of those topics that cancer patients can only talk to other cancer patients about. People outside of Cancer World can’t really imagine this part of the cancer experience.

But what exactly are people so afraid of? Mostly, I imagine, what will happen after they die, if they believe in an afterlife. I’m not sure there’s an afterlife; in fact, I sincerely hope there is NOT, so that’s not what really worries me. Maybe people are afraid of what will happen to their world after they’re gone – what will happen to their children and other family members, maybe friends. I’m not really afraid of that because I’ll be gone so I won’t know one way or the other. Plus, I’m not so arrogant as to believe that my family and friends can’t go on without me once I’m gone. That would be silly.

I think what I’m really afraid of is HOW I die. I don’t want to die in so much pain that I can’t even think properly. I don’t want family and friends, especially my children, to see me lying in a hospital bed, all skin and bones, expending every bit of energy I have left to force a smile so as not to upset everyone. I don’t want to spend the last days of my life pretending to be okay for the convenience and comfort of others. Call me selfish. I think a person on the verge of dying should be allowed to feel what they feel without worrying about upsetting others.

And I don’t want people to feel pity, guilt, or obligation. One thing that’s disturbing me about going to my friend Kate’s funeral is the issue of cost. It’s going to cost a lot of money for me to fly down to Australia for the second time in a month, and some people I’ve talked to think it’s a bit excessive of me to spend the money. After all, Kate’s dead and I don’t know her family at all so what does it matter whether I’m there or not? I know all this is true, but I have my own reasons for going to the funeral. When I saw Kate last month, she said the only thing she worried about was her brother and sister. Kate was never married and had no children. I want Kate’s brother and sister to see a lot of her friends at the funeral so they can see how much their sister was loved and respected.

I would hate for any of my family or friends to feel obligated to come see me die or be buried. I imagine people thinking about the cost of flying out, having to use up vacation days at work to make the trip, maybe missing a family holiday or a daughter’s dance recital, or a son’s soccer tournament to come out to my funeral. People will have this unintentional but niggling feeling that their lives have been inconvenienced or disrupted by my death. I think if my funeral were to be held in an exotic place like Bali and it was time for a family vacation anyway, then people would come to my funeral. I’d certainly be more likely to attend a funeral if it were coupled with a nice holiday, I confess.

I don’t think this is something to be critical about. I think it’s normal that people would rather not go to funerals. The living don’t have time for the dead. I don’t think I’d like to have a funeral. I’d like to be cremated and my ashes disposed of in any way that makes my family feel happy. I don’t care if my ashes are flushed down a toilet – I’ll be gone and the ashes are just ashes, not me.

I know funerals are not for the dead person but for the people left behind. But maybe the people left behind should find some other way to reconcile themselves with their loss. Maybe funerals in general are a bad idea.

What’s a Good Way to Die?

I’m going to a funeral in a few days – the first time for me. It’s for my friend, Kate, whom I worked with when we were both foreign correspondents in Seoul over 10 years ago. She was 64 and died of bowel cancer. I went to see her last month in Sydney when I heard she had cancer and had weeks to live. I hadn’t seen her in three years. The first thing I noticed was that she had HUGE eyes. I mentioned this to someone who said it was like Holocaust victims in documentaries – they all have huge eyes because the rest of their bodies have shrunk so much.

Kate was a tough, feisty, hard-working, hard-drinking, chain-smoking journalist like those classic war correspondents portrayed in the movies. To see her so frail and weak was a bit of a shock to me. I was in Sydney for a week but only got to see her once for 30 minutes because she was too tired or in too much pain to see visitors the rest of the time. She said she was on very strong painkillers and had extra doses that she could take if the pain got too bad. About a week after I left her, she was readmitted to the hospital because the pain got too bad to manage at home. Three days before her death, a friend went to see her in the hospital and she told him to “fuck off”. She was in so much pain that she couldn’t even see anyone and didn’t want anyone to see her in that state.

Kate has covered major wars from the trenches, was kidnapped by the North Vietnamese during the Vietnam War, and dragged by the hair and almost scalped in Afghanistan. If anyone could endure pain, she could. The pain must’ve been very bad. Maybe it’s like being slowly tortured to death like prisoners-of-war in the movies. The kind of pain that would make veteran soldiers spill state secrets. The kind that completely blinds you to anything else. The kind that no one ever comes back from.

And last month, my neighbor’s father died of pancreatic cancer just three months after diagnosis. She told me her father was in sheer agony for the last days of his life. Nothing like the peaceful, calm way they die in the movies, holding a loved one’s hand, saying something poetic, then gently closing the eyes. Apparently, he was writhing in pain and suffered a slow, tortured, agonizing death. It seems like the entire family’s been completely traumatized by the experience of seeing him like that.

I don’t ever want to get to the point of feeling pain above everything else. But how do I do this then? If I get to the point where nothing more can be done for me medically and the doctors can’t even manage the pain enough to let me die quietly, can I just kill myself? But then people would criticize me for being a coward. And I don’t want my kids to think their mother was a coward. On the other hand, do I just suffer through days or weeks of sheer agony – the physical pain as well as the pain of watching everyone around me witness such harrowing scenes of torture and agony? What’s a good way to do this?

The best answer to how I want to die is: suddenly. Unfortunately, cancer doesn’t afford that luxury. Maybe I’ll get lucky and get hit by a meteorite before cancer gets a second chance.