This was by far the most noticeably grueling part of my recovery. Yet, it was necessary for my long-time survival. To me, Whipple surgery alone was not sufficient protection against the possible recurrence or spread of cancer cells in my body. After a few weeks at home, I was ready—both physically and psychologically.
As I got strong enough to start the chemotherapy process, there were various decisions to make. These included the choice of an oncologist, the drug regimen to take, and the facility where I would receive chemo treatments.
Choice of an oncologist. This was one of the toughest steps in the chemo part of my journey. Why? The first oncologist (no name!) to whom I was referred upset me a lot. In laying out his prognosis for my future life span, he was very negative. That doctor relied on research data from a study that was decades old, and that did not take into account my unique circumstances—an extremely early diagnosis and no tumors in my lymph nodes. He opined that my odds were poor and that I might not even make my daughter’s wedding. When I mentioned that Dr. Coppa, my surgeon, felt that my prognosis was excellent, that oncologist pooh poohed this. He was a real downer!
The next oncologist I visited was from one of the major cancer hospitals in the world. That doctor stated that they followed a one-drug regimen. However, I might be able to qualify for a clinical test of a combined drug regimen (through a lottery). If I “won,” I would have a 50/50 chance of being in a control group and receiving a placebo rather than the multi-drug regimen. That was not appealing either.
I then turned to my go-to expert, Dr. Terrana, for his recommendation of an oncologist. And that really clicked. Linda and I met with Dr. Jeffrey Vacirca of North Shore Hematology and Oncology Associates (NSHOA), which is now New York Cancer & Blood Specialists (NYCBS). He came across as extremely compassionate and knowledgeable, while advocating a multi-drug regimen. He did not paint an overly rosy outlook. However, he offered hope and pledged his best efforts to foster a long-term healthy life. And he was sure that I would make my daughter’s wedding—and a whole lot more.
The drug regimen to take. Dr. Vacirca suggested that I have a port inserted into the front of my upper right shoulder. Then, the intravenous drugs could be injected directly through the port, rather than the nurse having to find a good vein in my arm every time I had chemo.
Although the port required a brief surgical procedure, I would recommend it to anyone. I saw too many people suffering as the nurse had to find an acceptable vein. At times, this meant the patients had to endure multiple needle pricks.
Due to my specific situation, Dr. Vacirca said that I would not need to have radiation treatments in addition to the chemo. Again, I was lucky. We agreed on a chemotherapy regimen known as GAX -- Gemcitabine, Abraxane, and Xeloda. The combination of drugs would potentially boost my long-term prospects. Despite the possible side effects, I eagerly wanted to do the GAX regimen. I was determined to do everything I could to enhance my life span and quality of life.
Choice of facility. Since NSHOA had a number of treatment facilities, I opted for the office in East Setauket, NY due to its extensive services and personnel, and, of course, Dr. Vacirca. It was also the home of Diana Youngs, the excellent nurse practitioner working with Dr. Vacirca. In addition, it was only a 20- minute drive.
Just before starting chemo, I had a special in-depth briefing about one of the drugs—Xeloda—because it had the most potential for dangerous side effects.
According to MedlinePlus:
Xeloda comes as a tablet to take by mouth. It is taken morning and evening for 2 weeks, followed by a 1-week break before repeating the next dosage cycle. Some side effects can be serious if you experience any of these symptoms or those listed in the IMPORTANT WARNING section. 13
Despite the numerous possible side effects, I wanted to at least try Xeloda. It would supplement my injected chemo drugs of Gemcitabine and Abraxane. More on this regimen shortly.
Finally, I was ready to embark on my chemotherapy sessions. I took the Xeloda tablets every morning and evening as instructed (see above). Then, when I went to a chemo session, bloodwork was done every time to make sure I was strong enough for chemotherapy. I had chemo treatments twice a week for several months—with breaks every few weeks. This ended on August 26, 2015.
At each chemo session, I received a saline injection into my port and then received my chemo drugs. It took several hours for one full treatment. Thus, I brought food, drink, and my trusty Kindle. And after each session was concluded, I was truly exhausted. That’s why Linda (and sometimes, my soon-to-be, son-in-law Adam) came with me, especially for the first several visits.
Almost immediately, I suffered some of Xeloda’s more serious side effects: nausea, vomiting, a fast heartbeat, diarrhea, and splitting skin on my fingers. As a result, I stopped taking Xeloda IMMEDIATELY. At that point, Dr. Vacirca advised me that the two-drug regimen would be nearly as effective.
By no longer taking Xeloda, the worst of the side effects went away. But throughout my chemotherapy, I had frequent bouts of nausea and diarrhea. And periodically, my white blood cell count got too low; so I needed to take extra shots. A couple of times, I required an iron IV. For nausea, I was given two drugs to take with meals: Creon and Zofran. They worked quite well; and I still take them before every meal. Lomotil helped with the diarrhea. And while it may be hard to believe, during all that chemo time, I remained upbeat and optimistic. Yes, I was a lucky man!!
A couple of anecdotes, one serious and the other rather amazing (looking back). Serious: A few times I had to “persuade” the doctors that I was OK to have chemotherapy, when my bloodwork was too iffy.
Pleaded was more like it. I explained that I had to be good to go for my daughter’s October wedding. That was the driving force for me at the time. They usually went along with me. But sometimes Ihad to get extra medications. And yes, I realize they were looking out for me and my well-being.
Rather amazing. As a hot-shot (said tongue in cheek) university business school professor, I did interviews for a wide variety of media. One local cable TV show featured me rather frequently in 5-minute clips. About a third of the way through my chemo treatments, I was asked to do some video interviews. The reporter would come to my house, I’d sit in front of my fireplace, and we’d do 4 to 5 clips that would be shown one per week over the next month or so.
One time, I was having a tough week, since in addition to my chemo, I had to have shots three days in a row for a low white blood cell count. On the day I was to do the interviews, I drove to get my third day’s shot, drove home, and changed into a jacket and tie. [In TV land, shorts are usually OK, since they rarely shoot below your waist. LOL]. We did five short interviews, with the set ups between interviews taking longer than the chats themselves.
When we were done, I wondered how I got through all of the interviews—on five different topics. Grit and determination, as well our adrenaline flow, can take us a long way. By the way, it was hard for me to watch the interviews. I still had months to go with chemo, and I looked emaciated and had thinning hair. Not how I wanted to see myself. But, hey, I was able to do the interviews and I thought I sounded good, even if I didn’t look that way.
While in chemotherapy, I discovered a brand new cancer community—my fellow cancer survivors going through chemo at the same time I was. We talked, we teared up, we laughed, and most of all, we supported one another. It made the time pass more quickly, and it was so good to share conversations with those going through similar experiences.
In the East Setauket facility where I received my chemo treatments, there were a few different-size room configurations. Those rooms ranged in capacity from 3- 4 chemotherapy set ups to 7 set ups. Some rooms had TVs, while others didn’t. I think I surprised myself by eventually settling in at the room with the most other patients and no TV. It was the best choice I could have made. My fellow chemo recipients and myself very much reinforced one another. After chemo sessions were completed, I signed up for our community’s Facebook page. I tried to post upbeat material there.
And still do!
Despite the side effects and tiredness I felt due to chemo treatments, I really tried to stay “happy.” How did I pull this off? First, I started going to Thursday night meditation classes with my daughter Jennifer. As a cynic, I was astonished by how good the classes made feel. I got to relax during the class, I learned very useful breathing methods, and I even acquired meditation techniques that enabled me to be calmer in stressful times. Furthermore, I got to see Jennifer every week.
Second, I decided to go back to the gym twice a week. I could do almost nothing because I was weak and tired. BUT, wow did I feel great after going. It showed me that l was making progress and that boosted me quite a bit psychologically. Never did 1-pound weights achieve so much. And while at the gym, I interacted with other members of my community—the gym memb