Don’s Story: Fighting Head and Neck Cancer and Colon Cancer, Part Four

PART IV: TREATMENT AND MORE TREATMENT

Continued from Part Three

Treatment was laid out. I had to have a port put in my chest for chemo as they set up ten chemo treatments at the end of each week of radiation to stall the colon cancer. The chemo consisted of cisplatin, Taxotere, 5fu, and Erbutux. The colorectal surgeon was head of surgery at one hospital in our community and was moving to another hospital in the same position. I was his last patient the day before he moved, and he did the surgery for the port. When he walked into the room were my wife and I were waiting (I had already been sedated), I remember him saying out loud,

“Sir, I have never met you and your wife, but you have several very important people watching out for you, and I am going to take very good care of you.” 

I knew who he was talking about although no names were mentioned. 

That’s the last thing I remember until I woke up later in recovery. Then the fun started. I underwent 45 radiation toma treatments where they put a mask on you which is nailed to a board, and you are slipped into the machine. The first time I walked into the treatment room, the radiation technologist was the woman who lived next door to us. Talk about a comfort level, wow! Radiation was five days a week and then chemo on Friday afternoons for two hours. I had to take the bag with the 5fu home for the weekend with the battery-operated pump, go in Monday morning and have the bag removed, get the Neulasta shot, and start the procedure all over again for ten weeks.

I laughed it all off. This was a piece of cake, and all the medical pros were so great, kind, considerate, and pleasant. I felt great for the first time in two weeks. My brother and his wife came to visit from Miami to check up on me; we even went out to dinner. It was one of the last meals I enjoyed for four months. After they left and we settled into a routine, my throat swelled up and I could not eat. If I got a glass of water and one Boost a day down, it was all I could handle. The radiation oncologist wanted to place a feeding tube but advised us that I might lose the ability to swallow, and I chose not to do that. I went from 215lbs to 115lbs in eight weeks. I looked and felt like I survived the Holocaust when the radiation treatments were over. To top it all off, I was on blood pressure medicine, and the massive weight loss knocked me down. I was on the couch basically comatose. After my wife questioned the doctor, and he stopped all the blood pressure medication, within 72 hours I was up off the couch and feeling better.

It did take quite a while to regain the ability to eat, chew, and swallow, but about six weeks later everything was better, except I have never been able to put the weight back on no matter how much or what I eat. Today I weigh about 140lb, but I am working with a nutritionist and have put on three pounds since we started working together several weeks ago. This has been the first weight gain in years, and I hope it will continue. 

After all the radiation and chemo, the doctors did colon surgery on me right before Christmas 2016. Our oldest daughter came home to be by my side for the week. I do not remember much but recently remarked to her that I wasn’t in much pain after the operation. She laughed and said,

“Dad you were catharized for 3 days and had a morphine pump which you were pushing every ten minutes, lol.”

I do remember that the ride home from the hospital was terrible, and my wife must have hit every pothole on the badly paved roads in our downtown. By Christmas, I was on my feet and enjoyed the holidays with family. 

In January of 2017 we were sent for scans, and it was physically evident that the radiation had not done anything for the tumor on my neck. The scans still showed massive cancer involvement. The radiation doctor brought this up at a cancer board meeting, and my medical oncologist suggested that we try Opdivo/nivolumab.

We were counseled and met with the financial folks. We were told the cost of the new immunotherapy drug was $16,000 each infusion, and the treatment schedule was every two weeks.  My wife and I looked at each other wondering how we were going to pay for this. We immediately got my insurance company involved and found out this was a tier five drug, and my copay was $3,500 a year. Ok, that’s a lot better but still a chunk of money.

Our daughter was in her senior year of college and planning on going for her Masters, which meant another two more years of tuition and dorm costs. That night I got online looking for any info about financial assistance, and I found a web site for the Bristol Myers Squibb Patient Assistance Program. I figured what have I got to lose? If I am going to throw $3,500 out each year, I’d rather give to my girls. I filled out the paperwork, got the doctor’s office to do their part, and sent it off. Between Medicare, BMS, and my insurance, the cost for treatment has been $53.75 every two weeks for the past 7 years.

Continued in Part Five

colon cancer colorectal cancer head and neck cancer patient stories

Last modified: December 16, 2024