Part II: Treatment
Chapter 5: My Cancer is Worse Than Yours
My brother-in-law, Joe, had thyroid cancer as a child. We jokingly tried to determine whose cancer was worse. “I have an oncologist, you just had a hormone doctor.”
“Oohhh, an enlarged spleen! The thyroid determines how you grow and eat.”
“I have to get chemo.”
“They had to slice me from ear to ear…and I lived!”
You sometimes get the sense that just as Joe and I wrestled to see who was either tougher, or at least more deserving of sympathy, there is also a competition amongst the cancers themselves (or at least their foundations). Let’s face it, if you think ribbons against cancer, you think pink. Damn breast cancer. Hodgkin’s is left with lavender. Not purple mind you, lavender.
Still, that’s better than poor lung cancer that always struggles to find enough research funding. It seems people are too willing to blame the victim of lung cancer. After all, smokers do this to themselves, right? Never mind that 10% of lung cancer patients have never smoked…oh, and lung cancer accounts for more deaths than “the next three most common cancers combined (colon, breast and pancreatic).”[1]
Still with over 13 million people diagnosed with cancer in this country,[2] you probably have developed a sort of informal cancer tragedy/near miss list. I know this because it is often shared with me when folks find out I have the cancer.
“Oh yeah, my dad had cancer and he’s still around 10 years later.”
“I had a friend with that…oh wait, no, it was lung cancer. He died.” (A real quote.)
At the time I was in the hospital awaiting diagnosis and treatment I was still working. I taught an undergraduate class in information reporting and presentation. The nurses set me up in a family lounge, and twice a week I would teach the class via Skype: the virtual professor. A number of those students emailed me to tell me their stories of encounters with cancer. Frankly, I think it was the only reason I got good evaluations that semester.
I have a list too. My grandmother died of leukemia. Other grandmother died of colon cancer. My brother-in-law had his wimpy thyroid cancer (love you Joe). My mother survived breast cancer. My son’s best friend’s mother died of colon cancer. Graduate mentor died of prostate cancer. Two colleagues doing well years after breast cancer. Neighbor with terminal breast cancer. Still at the top of that list was Joanne.
Joanne died of advanced breast cancer, but not after some damn good and productive years. Joanne was probably one of my closest friends and colleagues. We did research together, we wrote together, we snuck out of work and went to a movie or two together (though her husband Paul was my real partner in seeing movies…normally violent or very bad science fiction movies).
I remember lunches with her where she would talk about being tired and other side effects in between office gossip and empire planning. I remember one lunch where she tried to emphasize to me just how precarious her health was. “David, you have to understand that I may die.”
“I understand that Joanne, but I don’t know how to deal with you dead, so I’m going to talk to you like you’re alive.” Pithy, and in retrospect, way too dismissive.
Joanne went through years of chemo. The goal, as she put it, was to keep her going long enough to come up with the next medical breakthrough. People throughout my process have remarked on my positive attitude and humor. I credit it all to my dear friend Joanne. And my dear Joanne was top of my mind on the first day of chemotherapy.
The Black Shroud
Since I am writing this from the perspective of a patient, and not a doctor, I won’t describe chemotherapy in medical terms. Instead I’ll describe it as I saw it as a patient: AAAAHHHHHHH!!!!!!
After my meeting with Dr. P. the night before, the nurses had indeed brought me a pile of literature on chemo and the chemicals (toxins) that were about to be pumped into my body. Add to that feverish Internet searching and I was ready for everything from losing my hair, to throwing up on a regular basis, to skin sores, to, of course, sudden death. It did not help that the bags of chemo they hung for me on that first day of my treatment were covered with black shrouds (the shrouds protect light sensitive chemicals…but it had a distinctly different impact on me).
So here’s how chemo starts. The nurse comes into my room and puts on a gown. Then she put on gloves. Then she put a big sign on your door that reads “chemo precautions.” Then she hangs the chemicals on a pump and programs the dosage. Then she brings in another nurse to check everything. Then she starts pumping the chemicals into you. I had no special gown. I had no gloves. And as for precautions…well, it was going right into my veins.
Normally this might be through an IV, but I had a PICC line installed. A PICC is a peripherally inserted central catheter. It is a tube that is inserted into a vein in your arm (near the bicep) up into your shoulder and finally ends in a major vein right next to your heart. It sounds scary, but it turns out to make life much easier. Rather than poking you with needles, they simply attach to your PICC line. It does, however, take a little while to get used to having tubes hanging out of your arm.
With the chemo running into my PICC I waited. I don’t know what I was waiting for, but I was sure it was going to be bad. Then I started to shiver. My wife draped a blanket on me. I still shivered. My wife called for the nurse. A nursing student came in and they both started to drape me in blankets until I stopped shivering. I looked like a cocooned caterpillar. A cocooned caterpillar wired to a black shrouded bag of toxins. My mother looked concerned.
The Family
Once my medical team suspected cancer my wife called my mother to tell her the news. My mother, who lives in Ohio, was in a car in Tennessee on her way to Florida when she got the call. She found the closest airport and flew to Syracuse the next day to be with me and help out at home.
It took me a few days to truly understand the depth of my mother’s concern. Somehow in my 40s I had forgotten that I was still her son. If my son was diagnosed with cancer you better believe I would be in that hospital room. My mom was there for the first chemo, and she was there when we had to tell my two sons what was going on. In a way my father was there too, even though he had died over 15 years ago at just 55 years old.
I was at my father’s bedside when he died. He had gone to the hospital complaining of abdominal pain. He had a gallstone (thanks genetics). Normally, as I have said, this is painful, but not dangerous. Your liver makes bile, a soup to help you digest fats, and stores it in the gallbladder, which spits it into your small intestines via the bile duct when you eat. A gallstone is when some of this soup hardens sitting around in the gallbladder. If that “stone” finds its way to the bile duct and gets stuck? Ouch!
In a small part of the population the bile duct joins up with something called the pancreatic duct before it joins the intestines. The pancreatic duct delivers digestive juices (technical term) into the small intestines. The problem is if a gallstone stops up a joint duct like this, particularly just after you have eaten: not only do you get the pain of a backed-up gallbladder, the pancreatic juices also back up into the pancreas, causing acute pancreatitis. There is no elegant way to put this: the pancreas begins to digest itself. If this can’t be controlled, these juices begin leaking out of the pancreas and this leads to organ failure. My father was part of that unlucky population.
I was 28 when this happened. I still think about my father every day. By the time I got home to be with him the doctors had put my father into an induced coma for the pain. He never woke up. He died surrounded by my mother and me and some friends. As we told stories and laughed celebrating his life his vital functions slowed. At the moment his heart stopped a doctor and nurse rushed into the room to revive him. However, he wanted no “heroic measures,” and his doctors had made it very clear that they had done everything that could be done and there was no chance for recovery. So my mother, with a strength I cannot fathom, stayed the hands of the doctor.
I would note, however, that his heart, an organ that he had struggled with (a quadruple bypass, multiple stents, and endless battles over smoking and a bad diet) was the last thing to go. “Listen son, I could get hit by a bus tomorrow,” he would say as he downed a fried baloney sandwich. After his bypass he had me bring Kentucky Fried Chicken to his hospital room. I believe it was my father’s final “screw you” to the doctors that the heart went last. He was a man with a great sense of humor so I wouldn’t put it past him.
My father’s death made me (and still makes me) think a lot about my kids and being left fatherless. I have two sons that my dad never got to meet. Riley was 12 when I was diagnosed. Andrew was 9.
There was not much debate between my wife and me when it came to informing the kids. Be open and honest and ready to answer all their questions. I don’t think the idea of hiding my condition from my kids ever really occurred to us. Yet, I have had several folks tell me about having a parent die of cancer, and never being told what was going on. They told me they are still dealing with that as an adult. We didn’t want that.
For Andrew the talk was relatively easy. Daddy is sick. He has cancer. He will be tired and probably lose his hair. Andrew didn’t really have a grasp on death and such, so to him, it was just some more information. “Can I get ice cream now?”
Riley’s talk was tougher. There are way too many ways in which my eldest son is like me. One way that was evident during this conversation was using humor to mask our emotions and/or break the stress. With every bit of information he made a joke while clearly tearing up. Finally, at the end he said, “Yeah, but it’s not like you’re going to die.”
“Actually son, yes, I could die.” May you never have to say those words to your child.
The only thing that saved me from breaking down at that point was having my wife and mom in the room. “But grandma had cancer, and she’s fine. Uncle Joe had cancer, and he’s fine.” Never mind that he remembered Joanne who had died from cancer, and his good friend’s mother. Riley is smart. Riley knew the possibilities. Later, however, Riley would also be the first to make jokes about my lack of eyebrows and hair. All of Riley is smart, including his ass.
It’s Randomness That Gets You
That first chemo did its trick though. My platelets started coming back. 2 turned into 10 turned into 20 turned into 38 and 10 days after I started chemo, and 22 days after being admitted to the hospital, I was sent home. Now most folks would think going home would be a blessing and the best feeling in the world. However, as I stepped off the ward my heart was pounding, and I was terrified. No 24-hour nursing care. No instant access to doctors. I felt vulnerable. I was going home. I had cancer…what’s next?
Well it turns out what’s next was getting a stomach bug the kids had brought home. I woke at around 5 a.m. and, hmmmm, how to put this… I woke up and my previous day’s nutrition sought a rapid exit through every available option. By 1 p.m. that day I had a fever and this led to my first call to the emergency phone number I was given upon discharge. In what I would find out was the normal procedure with cancer patients with a fever, they told me to go to the ER.
By the time I got to the ER I was very sweaty and had no energy. My heart rate was 160 beats per minute (in case you care, the normal range according to the Mayo Clinic is between 60 to 100 beats per minute[3]). The doctors were worried about my heart so first up was an EKG. Good news, my rhythm was normal. So, if I was having a heart attack at least it was an orderly one. With fluids my heart rate came down to 140. This is where it gets fun.
They needed to rule out a heart attack, and it turns out there is a cool way of doing it. They stop your heart. OK, that is a bit extreme. They keep you hooked up to the EKG and inject you with adenosine. Once again I am not a physician, so this may not be technically correct, but it makes the heart calm way way down for a second. It is not a pleasant feeling. In any case, this momentary lapse can tell the ER folks if I have any blockages or other heart problems. Good news…no heart problems. So they gave me IV fluids. Perhaps I was dehydrated (a radical theory given my 5 am purge of every fluid in my body). They decided to keep me overnight and let me go home the next day.
I spent most of that night in the hospital worrying I was going to die of a stomach bug and that my kids would blame themselves. That’s the thing I learned with cancer in general, and chemo in particular: it’s not the treatment that screws with your mind, it’s the random stuff that comes up; the stomach bug, the unexpected blood count. When you eventually get into the groove with treatment you learn to deal with the pains and side effects (more on that after the next chapter). You almost feel invulnerable. “I’m in treatment…cancer can’t kill you while you’re in treatment.” Then you get a stomach bug and spike a fever and you’re sure you’re a goner.
And here’s the thing, no amount of information can convince you otherwise.
Notes
[1] http://www.lung.org/lung-disease/lung-cancer/resources/facts-figures/lung-cancer-fact-sheet.html
[2] http://www.cancer.org/cancer/cancerbasics/cancer-prevalence
[3]http://www.mayoclinic.org/healthy-living/fitness/expert-answers/heart-rate/faq-20057979