Keeping People Alive

Last night, I learned that one of my Dragon Boat teammates (and fellow breast cancer patient) just died. Sue found out her cancer had come back for the third time, just after I found out about my own recurrence. But she continued to paddle for the Breast Cancer Foundation Dragon Boat team because she didn’t have any symptoms. She told me she was going to miss the World Championship Regatta in Australia at the end of the month because she was flying to the U.S. for the birth of her first grandchild.

She died on the plane ride over three days ago, not from cancer, but from a blood clot that traveled from her leg to her lung.

I decided to take up Dragon Boat racing again so I went to training tonight. I kept thinking about Sue while we were paddling. And they weren’t sad thoughts. I was thinking about her counting in Spanish, about the special glasses she used to wear to keep the water from splashing in her eyes, about her coy smile and her American accented voice. All small things that made up Sue.

Then I turned to the guy next to me – an older man who has taken his wife’s place on the team since her death. I realized I didn’t know anything about him or his wife, whom I’d never met. So I asked him about her. Turns out tomorrow is the second anniversary of her death. I hope he didn’t think it was disrespectful of me, but I wanted to get to know her. I wanted to keep her alive for him too. I think he appreciated it.

I began to think about how most people live in memories. Often, they’re little, seemingly inconsequential things, not big moments in history. I wanted to keep Sue alive in my mind and picture her smile as I paddled. I wanted to keep talking about her and thinking about her even though she wasn’t with us anymore.

So as we paddled back to shore at the end of training, I began counting aloud in Spanish. In our last training session together, Sue had said, “Let’s do something different!”

I’d like people to smile and laugh when they think of me after I die, not cry and be sad. That’s something different.

Chemo Brain and Fatigue

I need to write about two side effects of cancer treatment that I’ve tried to pretend weren’t happening to me. For folks who don’t know a lot about cancer, this little primer might be helpful in understanding cancer patients. For those who know all this already, have patience. (I can still pull out the puns, chemo brain or no!)

Chemotherapy kills cells everywhere in the body. The drugs don’t zero in on just the cancer cells; it’s more like a blietzkrieg that carpet-bombs any cells that are fast-growing. Chemo kills brain cells and this leads to things like memory loss, difficulty concentrating, and slower thought processing.

This might seem like a trivial side effect compared to losing body parts and hair, but for me, this is far more serious. I can do without breasts and hair. But without the sharpness of mind, ability to multi-task, and general mental flexibility and strength, I’m not me.

And then there’s fatigue – the kind of tired you just can’t get rid of with sleep. It’s down-in-the-bones tired. I didn’t have this the first time around, but I’m feeling it now. I have to admit that there are times in the day when I just want to lie down wherever I am – on the floor in the supermarket, in the car, anywhere.

And much to my surprise and disappointment, not everyone is understanding about these sides effects. I don’t really blame them. Many people just don’t know about chemo brain and fatigue. They’re not visible like baldness and vomiting. I guess it’s my job to educate my friends and family. But the reality is, the world moves on and people will not stop their lives or be inconvenienced because I have cancer.

So to all our friends and family reading this Blog, if I forget your birthday, if I forget to turn up for your dinner party, or if I don’t seem to be listening to you while you’re talking to me, it doesn’t mean that I don’t care about you or what you have to say. It may be because I have fewer brain cells than I used to. That, or I’m actually asleep.

Join Me in This Blog

I started this Blog last year during my first fight with cancer because Tony, my clever husband, suggested it. He wanted to keep family and friends overseas informed about my treatment. But now, a lot of other cancer patients as well as people who know someone with cancer are reading this Blog.

Many of you write to me or tell me personally what you think of my Blog entries, and quite a lot of you have experiences and thoughts of your own to share with me.

I’d like to ask you to share these thoughts and experiences with other readers of this Blog by using the “Add a Comment” link at the end of each entry. Some of you have very wise and clever things to say – things which I’ll take credit for, if you don’t say them yourselves.

And while we’re doing the on-line community thing here, I’d like to thank you all for reading this Blog. It makes the whole cancer thing feel a little less lonely.

Anger and Unfairness

Many of my friends and family have said they’re angry that I have cancer again. They say it’s not fair. I’m not sure why, but I don’t feel any anger or unfairness.

I’ve been told I should be angry with my gynecologist who misdiagnosed me for five months while the cancer spread. I’m told I should be angry at my surgeon who didn’t do the proper test to see how aggressive my cancer was and then let us go off on holiday for two weeks while the cancer spread. I’m told I should be angry with the surgeon who left a trail of cancer cells behind while doing the biopsy, thereby giving me skin cancer. I’m told I should be angry at the surgeon who drained fluid from my chest and hit some blood vessels, causing internal bleeding that required additional surgery and a delay in my radiation therapy. I’m told I should be angry at all my doctors for not treating my cancer properly the first time around so that it came back less than a year after my treatment was finished.

But I really don’t feel angry with any of my doctors. They’re all human and they made mistakes. These mistakes may have cost me many years of life, but I can’t say I wouldn’t have made the same mistakes if I had been in their positions. I’ve always thought that to be the best gauge of any behavior – putting myself in their place. If I had made those mistakes, would I want my patient to be consumed with anger at me and blame me for their situation? Of course not. I’ve since gone back to some of my doctors to tell them I don’t hold this against them. A few have apologized and told me how bad they felt about what’s happened. Then I ended up trying to make THEM feel better. They’ve learned something, and they won’t make the same mistakes again with future patients. That’s enough for me.

The only time I’ve felt angry during this whole cancer experience was when doctors, nurses, or technicians were unprofessional, uncaring or rude to me. And now that I think of it, I’m not even angry with them, just exasperated that they haven’t been trained properly to treat patients with sensitivity.

Anyway… back to the anger. Why am I not angry? Normally, I get angry quite easily. I get angry with drivers who park their cars illegally outside our condo, blocking the view and making it very dangerous for cars going in and out. I called the Traffic Police two days in a row to yell at them for not doing anything about it. Why am I angry about cars blocking traffic and not about my cancer? I think it’s because I’m angry at intent. I’m angry about inconsiderate, selfish people endangering the lives of others. But who’s being inconsiderate or malicious in my cancer story? Nobody, really. So what’s to get angry about?

And as for the “it’s not fair”, “why me” feeling some cancer patients have… I just don’t feel that either. Of course it’s not fair. If cancer were fair, Osama Bin Laden would drop dead from cancer, and so would all the murderers, rapists, and child abusers around the world. And why NOT me? Does anyone ever get cancer and people say, “Yeah, it figures. She deserves it”? Hmmm… maybe some of those illegally parked drivers I reported to the Traffic Police this morning would say that about me.

Chemo #3, Gut Instincts

I went to have another blood test to see if I could get my chemo today. Just before the nurse took my blood, my friend asked me what my gut instincts told me. I said, “The white blood cell count will be just under the threshold, but the doctor will give me an injection and let me have my chemo anyway.” The threshold number is 3. The result said 3.6. My instincts were wrong. But then the nurse realized she’d made a mistake and took another reading. It was 2.6 – just under the threshold, as I’d predicted. The doctor gave me an injection and let me have my chemo. Exactly as I’d predicted.

I’d like to pat myself on the back now for all the times my instincts were right, even though the doctors were telling me otherwise. From the very beginning of this whole cancer experience, when I was massaging the lump in my breast because my gynecologist said it was a clogged milk duct, I kept thinking something was amiss. Cancer didn’t even enter my mind, but I thought it was definitely something other than a clogged milk duct. Lucky for me I pursued it. Unlucky for me, we didn’t find out in time to give me a chance of cure.

And since last December, when I had sharp pains throughout my chest and tenderness around the skin cancer area, I thought there was something wrong. I just didn’t have the medical knowledge to connect the dots. Since I started this new round of chemo three weeks ago, the tenderness on the skin has decreased considerably. So that wasn’t a figment of my imagination either. That was cancer. And the sharp pains – also gone. That wasn’t just damaged nerves from radiation. That was cancer. My instincts were right.

And when we got the results of my MRI last month, my instincts said cancer. My doctor said no, Tony said no, my friends said no. They were all being positive, bless them. I was being realistic and my instincts told me it was cancer. I was right. But I really wish I were wrong.

I’ve talked to so many women now who had mammograms and clinical exams and were told they were clear for cancer but later found out that the scans and doctors were wrong. In many of these cases, the women had a gut feeling that there was something wrong, despite the doctors and scans saying everything was okay. I’m a very scientific person. I believe in facts and evidence. But my instincts have been right so many times when they disagreed with doctors and scans, that I’m now a big believer in gut instinct.

So for all the women who are reading this Blog, here’s my advice:

Nobody knows your body better than you do. Your doctor probably sees you once a year, and you’re just one of hundreds, thousands of patients she sees in a year. Trust your gut instincts. Get second, third opinions. We’re not talking about buying a new house or interviewing for a new job here. We’re talking about your life.

Two years ago, if I’d ignored my gynecologist and sought a second opinion and had a breast ultrasound, chances are extremely high that they would have found my cancer in the early stages and I’d be looking at a 100% chance of cure instead of 24 months of life left.

I hate preaching, but if I find out that any woman I know is diagnosed with late stage breast cancer, I will consider it a personal failure on my part. So nevermind you. Do it for me. Get screened regularly and trust your instincts.

Chemo #3 Cancelled

When we were kids, my brother used to joke that I was so dumb, I’d stay up all night to study for a blood test, then still fail the test. Well, I failed my blood test today – my white blood cell count was too low so I couldn’t have my chemo. Instead, I got an injection to boost my blood count. I promptly went out and had a protein lunch – lamb chops AND steak. I’m drinking a protein shake now and having steak again for dinner.

I need to go back to the doctor tomorrow for another blood test, so I plan to have eggs for breakfast. This is more fun than studying for an Algebra exam. All I need to do for this test is eat lots of protein. Of course, I might die of heart disease with all this red meat I’m eating. My body might not know how to digest it all, after a year and a half of a vegetarian diet. If I’d studied harder for Algebra as a kid, I might actually be able to work out the math of how much protein I need for the blood test versus risk of heart disease.

I’m trying not to think of the harm all this red meat might be doing to me. I cut all animal products out of my diet after my diagnosis because I’d read enough to convince me that they did more harm than good. I’ve felt better and stronger after I changed to this new diet and cut out all meat, egg, dairy, alcohol, caffeine, and sugar. Unfortunately, my favorite foods are all of the above. Cruel coincidence.

I had a hunch I would fail the test. I’ve been feeling weak and tired. Not the kind of tired you can sleep off, but down-to-the-bones tired. Hard to explain, but people say there’s no tired like chemo-tired so I guess this is it.

As far as I can remember, the only other test I’ve ever failed in my life was in elementary school – 5th Grade History. I had to take the test paper home and have it signed by a parent. I was so scared, I thought about running away from home. When I realized I didn’t have a bag to put my clothes and toothbrush in, I decided I couldn’t run away, so I showed the test to my father. He asked, “Did you fail because you didn’t study or because you didn’t know anything?” I think I just stood there and cried. He promised me he wouldn’t tell my mom if I studied harder next time. I wonder if he really kept his promise or if that was just a child psychology ploy.

I’ve eaten more red meat in the last two days than I’ve eaten all year. I’ve been “studying” really hard. I don’t ever want to see another steak, so I really hope I pass this blood test tomorrow. Wow, what a new world I’m living in – hoping for my bone marrow to make some more white blood cells so I can have some toxic chemicals injected into my blood. And THAT’s supposed to SAVE me!

Envy

Many cancer patients envy healthy people -- people with normal lives and life expectancies. I don’t reach that high. I often envy other people's ailments. I walk by a cardiologist's office on my way to Chemo Club and wish I had a heart problem instead, or walk by a guy with a broken leg and think how nice it would be to have a simple broken leg.

There’s security in knowing there’s a solution to a problem, no matter how tricky or difficult the solution might be. Blocked arteries? Unblock them. Shattered leg bone? Get the surgeons to put it back together. Of course, there are probably some conditions that have lingering side effects – aches, delicate heart, and so on. But nothing like these microscopic killers that can linger in your body indefinitely and pop up months, years, even decades later.

There’s no solution, no cure for cancer yet. All this fighting is like beating back an enemy, knowing that even though you win battle after battle after battle, you can never turn around and go home to safety because you can still be ambushed on the way home or there could be another wave of enemies just over the next hill. You’ll just never know and never feel safe.

On the other hand, maybe humans can live off the success of one battle at a time. For the past several days, I haven’t felt any more of the stabbing pains in my chest or the dull ache in my right lung. I think this chemo’s working. And my doctor touched my collarbone and said it felt “less full” and she could feel a tiny lump there instead of a whole bloated fullness. That’s good. That’s one battle down.

There’s also security in knowing your enemy. I had all sorts of other minor side effects that the doctor told me were from the chemo. Once I learned where the pain was coming from, I felt much better. I think the pain even subsided, since we’d identified the source and I knew it wasn’t cancer growing, but the chemo working.

I’m fighting a series of battles in a much larger war, but this is just a metaphor for me. What about people who live in real war zones? I bet they’d envy me having something as simple as cancer.