Cathy

Yesterday I had a conversation with a woman, let’s call her Cathy. She got in touch with me because she heard a speech I made last week at a fundraiser for the fight against pancreatic cancer.

Cathy has been battling pancreatic cancer for several years, I don’t recall exactly how many. Her cancer metastasized from her pancreas to other parts of her body, most notably her lungs where she says she has many lesions. Because of this she has never been a candidate for surgery or radiation, her only treatment option has been chemotherapy. She’s been doing chemotherapy for several years, which may have extended her life, but offers very little or no hope for remission.

Pancreatic cancer is pretty much the perfect disease, the king of all diseases. It has no clear symptoms until it is generally too late for it to be treatable. It spreads rapidly to many of the vital organs in the body. It is very hard to detect, even when it is suspected, because it is hard to see on any kind of scan. And it leads to a long and unpleasant death. However, medical science is making strides, the five-year-old survival rate has more than doubled to 13% in recent years, and lots of innovative clinical trials are under way. Its not hopeless, but the odds against survival are daunting, and everyone who gets it knows this. And for those who are lucky enough to have success in treatment, there are usually reoccurrences that require further treatment, which may or may not be successful.

The standard chemotherapy regimen for pancreatic cancer is called Folfirinox, and it consists of infusions every two weeks of a virulent cocktail of four different poisons. These poisons attack the fastest growing cells in your body, which are cancer cells. Of course, they damage a lot of the other cells in your body as well, and the list of side effects from this protocol is longer than a CVS sales receipt, including nausea, diarrhea, mouth sores, neuropathy, and much, much more.

Cathy told me she has been hospitalized three times in the past six months from her reactions to all of the chemotherapy. She’s also lost a great deal of weight, she said she’s down to about 90 pounds. This is typical for people going through such intensive chemo.

I was much luckier than Cathy. I am a nine-year survivor of pancreatic cancer, and the reason I am still here is that I had two tumors that were localized around my pancreas, with no spread to other parts of my body. So, they were able to treat my tumors with chemo and radiation, and eventually remove them with surgery. Of course, none of that was as “easy” as it sounds; my chemotherapy was also arduous, and the surgery was complex and extensive. But my situation was basically a best-case scenario with pancreatic cancer.

 I’ve had three minor reoccurrences since the surgery, which have all been treatable with more chemo, radiation, and in the last instance, surgery to remove a small wedge of my lung. I’ve now been clean for almost 4 years.

Cathy got in touch with me because she hoped that there might be something in my story that could be useful for her, maybe some innovation or different type of treatment that might be helpful in her case. Of course I was willing to talk to her, though I knew I had a little to offer. And I think that she knew that too, but felt it was worth the attempt.

Cathy is nearing the stage, or perhaps has reached the stage, when doing more chemotherapy seems overwhelming and futile. And having gone through the same regimen of chemotherapy for 20 rounds, I completely understand.

Part of the accepted conversation about cancer is the phrase “never, ever give up.“ I’m pretty sure that the people who say that have never gone through extended periods of chemotherapy. The eight months in which I underwent chemo treatments was the most difficult period of my life; it was physically and emotionally overwhelming. The physical part – nausea, diarrhea, neuropathy, lethargy and depression, overpowering fatigue – was truly awful. I lost 40 pounds in eight months.

But the emotional part was even more difficult, lying in bed, believing that I was likely to die before too long, knowing that the treatment was just delaying what was likely inevitable, and understanding that it would be a miserable and prolonged decline.

I am a very different person today because of cancer. I have neuropathy in my feet because chemotherapy killed many of the nerve cells; I don’t have as much feeling in my toes and on the edges of my feet, so they are cold all the time, even in the summer. I don’t sleep very well, and I’m tired pretty much all of the time. I can just lean against the wall and fall asleep. I’m also unsteady on my feet, I don’t think I could pass a sobriety test, like walking in a straight line or bouncing on one foot.

I get very drowsy after eating, and often I have to take a nap. Conversely, frequently at night I am unable to sleep, and I generally wake up in the middle of the night. I can’t get back to sleep unless I get up and eat.

But most importantly, my anxiety level is always pretty high. I’d say I’ve always been high-strung, but this is a whole different level. I’m generally worried about something all the time, and usually about things that are really just not very important. And I often feel depressed. I’ve come to believe that the anxiety and depression are a result of chemical changes and imbalances in my body, and not that related to anything going on in my life. It’s giving me a very different perspective about the nature of depression.

I have tried a lot of ways to mitigate these effects, and some of them help, but mostly I just try to cope with them. The quality of my life is still very good. But the fact of cancer in my life is never far from the surface of my consciousness.

But I know that I am still incredibly lucky. For most who are afflicted with pancreatic cancer, the reality is like Cathy’s story. It’s hard for me to even imagine what her life has been like these past few years, the suffering that she has endured, and I’m better able to understand than most. But I think she’s done with her fight now, and gearing up for her final stages.

I really don’t know anything about Cathy, her career, her relationships, what she loved or what she hated. She did tell me she continued to work up until very recently, which I find amazing. I know it’s important to for sufferers to continue to have a purpose and to find meaning, but it also had to have taken a tremendous amount of determination and toughness for her to keep working.

I don’t know anything about her family. I don’t know if she was loved by two people or 20 people or 200 people, but I have no doubt that she has touched a lot of people and made a difference to a lot of people in her life. I could just tell by her strength and her grace.

I really wish I’d been able to help Cathy. But I’m pretty sure that there’s not anything more that can be done for her than what she is already doing. Still, at the end of our conversation, she was effusive in thanking me, and what really struck me the most was that she told me she was really glad she had gotten in touch with me. Even though we both knew that I had not shared anything in terms of useful information.

But what she said was that it was just good to talk to somebody who understood. Just good to share with another person who comprehended what it has been like for her as she has gone through all of this overwhelming suffering.

When I thought I was dying, I spent a lot of time thinking about what my life was all about. I didn’t have a particularly great career, I didn’t make a lot of money, I didn’t do things that impacted a lot of peoples’ lives. I did raise three terrific children, three people who have turned out to be wonderful human beings. This is the most important achievement of my life.

But what I realized when I was going through the worst of my ordeal was that the only thing that mattered to me was that I had made a difference in the lives of those who I had known. That I had helped to make their lives happier, more satisfying, more meaningful in some way.

In the end, that’s really what it’s all about, isn’t it? That we can make and do make connections with other people at the deepest and most authentic level. That we really touch the lives of other people and allow them to touch us. As far as I can tell, that is the true meaning of life.

So that is what I heard when Cathy said “I’m glad I got in touch with you.” And even though I’m feeling very sad today, Cathy, I’m glad you got in touch with me too. I hope you will go peacefully, knowing that you made life better for everyone that you touched. I know that you did.