Before I started chemo, my oncologist asked me to come in for an information session to learn about the process and how to cope with it. A qualified nurse practitioner took at least an hour describing in copious detail all the adverse reactions I might experience. It was overwhelming and exhausting. One week later, when I started chemo, I was terribly worried; a swarm of negative emotions and images ran through my mind, all of which were unsettling. Later, I shared this experience with Dr. George Pratt, a meditation specialist, and he realized that this fearful information session may have created negative mental imagery for me, something I was completely against.
After I completed my first sessions of chemotherapy, I realized that out of the hundreds of potential side effects, I seemed to be experiencing only a small number. I selected 10 to track on a daily basis to see how they progressed during each day of the two-week chemo cycle. Below is the table that I used for each 14-day chemo session; I filled out this one in particular during my fourth session after 8 weeks of chemo.
This table had a couple of benefits:
The table allowed me to realize there was a pattern emerging for each of the side effects. Typically I found that the first week of each cycle brought the greatest discomfort. By days seven and eight, my body would rebuild and my strength would start to rebound. Identifying specific side effects and tracking them helped me to recognize this pattern and was so helpful in giving me a sense of control.
The table became a reference guide in communicating with my doctor about how I was responding to the chemo and the ancillary drugs given to counter the side effects. After my first bi-weekly visit, I realized when driving home that I hadn’t asked all the questions I mentally prepared, and decided I would present the table to my doctor at the start of each meeting. But I also wanted to be sure that I brought up my feelings and other issues that I wanted to discuss, which might not have been evident on the table. I created a “highlight” section (see the highlight for session four below). My doctor became accustomed to seeing the table and highlight on top of my records. These two documents became the framework for our conversation. He loved it!
The table led to discussions about diet, skin and teeth resulting in visits to specialists including a dentist and a dermatologist. As a result, I was able to learn how to mediate the adverse effects with expert guidance. My dermatologist told me that the pre-cancerous skin lesions that surfaced on my arms were proof the chemo was working. She said the chemo treatment is like a body peel that eradicates any pre-cancer sites I may have on my body. She gave me Vitamin C serum which worked well to heal the lesions.
Another time, after discussing the adverse effects of a white blood cell building drug, we discussed modifying the amount of the drug to help me feel better because my white blood cell count was healthy.
Eventually we discontinued this drug all together after I agreed to a mid-cycle blood test that showed my white blood cell levels were recovering well.
Chemo Journal – Example Template:
Session 4. Wednesday March 6 to Tuesday March 19th. Run/Walk =33 miles (20 running).
Session 4 Highlights:
This session lacked the peaks and troughs of the previous sessions. During days 1 to 7 I had more energy, less heartburn and practically no nausea. It was almost like my body had learned to fight off the side effects of the chemo! However during days 8 to 14 I did not rebound to my normal 100%. The side effects lingered. I felt more fatigue than I did during previous sessions during the 2nd week and had frequent heartburn at night (despite the Pepcid).
The blood in my nose has continued. I purchased a humidifier and have used Simply Saline but neither had a beneficial effect. At night my mouth is very dry and my head congested.
I continue to awake after 2 to 4 hours of sleep and feel awake and have great difficulty getting back to sleep (this may be the reason I felt fatigued during the second week – as mentioned above). 9 mg of Melatonin has not helped much.
I have shortness of breath during exercise – I suspect this is from the Pegfilgrastim. Since my WB Cell counts have been strong I would like to stop taking this shot. The side effects seem to be worse than the chemo!
I was alarmed by the increase in my PSA to 1.5, as that is more than double the last result. I would like to have that retested tomorrow.
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