The infusion room was quiet last week. The room is divided in two; a nurse works each side. On my side, it was me and two older men. Both of them had on long pants, sweaters, shoes and socks. One man had three blankets on him, the other only one. We all sat in 80′s pastel lazy boys. I wore flip flops, shorts, and a short sleeved shirt. My sweaty bald head stuck to the chair. I couldn’t believe the men were cold; I was burning up. I pulled up some Everything But the Girl on my phone and plugged my ears with headphones.
Ever since I found out I wasn’t dying immediately, I have been combing my brain… Why did I sink so fast? I have always thought of myself as positive. Through this whole cancer ordeal, fighting to stay positive has been my number one goal. How could I have just thrown it out so easily?
As the chemo slowly dripped into my body, some sort of clarity and order went to work in my brain. Stay with me.
In early May, after feeling a tumor growing for months, I had a PET scan. My oncologist would be out of town when the results came in. I had them sent to my surgeon. I was ready to take some action. When he called with the results, I was off at the kids school dealing with the unfortunate actions of a kindergartner and my 2nd grade son. (This rambunctious kid had pushed Mac down and stomped on his head.) Adrienne took the call from the surgeon. When I walked in with a very shaken Mac, she quietly said, “It’s the only tumor. Surgery is on May 14th. He may have to remove a rib.”
I took the news as truth and prepared to have my body rearranged again in order to remove the cancer. I had the surgery, had 3 ribs removed and slowly recovered.
But my blood tumor marker numbers started to rise very soon after the surgery. And then the pain at the surgery site went through the roof. If there had been no other tumors on the PET scan, and now this pain was unbearable, the only conclusion I could come to was that the cancer was coming back angry.
Which is exactly what my oncologist said.
We agreed that chemo was the next step.
And a CT scan to see what we were dealing with.
Adrienne and I went to the office to hear the results of the CT scan. Again my oncologist was on vacation, (which I have no problem with. I can’t imagine how stressful his work life is.) Another doctor from the practice met us.
“The CT looks good. Just the same two spots from the May PET scan; and they are both shrinking.”
“The same from the May PET?” I asked. “Yes,” he replied. “The one on your trachea and one in your right lung.”
As I sat in the infusion room rethinking all of this, it began to make a little more sense. I had believed that I was clear besides the big tumor that was removed in May. It had always been our understanding that if there was more than one tumor, surgery was not an option. Did the surgeon just jump the gun and ignore the rest of the scan? Did my oncologist ever look at the results and question the surgeon’s decision to perform a radical surgery on my very tired body?
So now I am frustrated. I am very happy to have my feeling of optimism back. I know I still have stage IV metastatic cancer; but I’m not dying tomorrow… or even next month. But the pain from the surgery, (three months later), is excruciating. I am not much of a whiner, but it hurts ALL the time. Norco, lidacane patches, pot, fentanyl patches, nothing completely takes the pain away. Sleeping is no fun. Sometimes it hurts to breathe. Sometimes it hurts to talk. And it’s doesn’t seem to be getting any better. Why did I even have this surgery?
After a week of rolling this over and over in my head, I have come to some conclusions. Maybe it was good to have the surgery. It was a 5cm tumor in my chest wall. The chemo is shrinking the smaller tumors. I looked at the chemo from a distance as a half empty glass; it has turned out to not be nearly as bad as I had imagined.
But there is the giant question. How much of a hand do I have to have in the decision making process? I have already fired one oncologist who missed a giant flag-waving tumor in my left lung. (One of these days I will write the story of Dr. Limvarapuss and why no one should trust their cancer care to him.) I don’t want to have to double check everything. Having stage IV cancer is my full time job. Between appointments, medication schedule, and sleepiness, my days are full of cancer. I use my left over time for my family. I want the decisions made for my health to be made for me. I don’t want to keep a binder of every sheet of paper. My chart is easily 5 inches thick already.
I don’t have much of a conclusion. I can see how I went down the death path so easily. But I didn’t need to. If I had known that the two small tumors were there, I wouldn’t have gone to my memorial and taken everyone close to me along for the ride. I did learn some things. When the time comes to really go down the path, it won’t be as frightening. I really wish I hadn’t gone there when I didn’t need to.