We have had a reprieve from the chemotherapy blues for the past month. My last chemo was 7 weeks ago today. After 4 weeks without chemo, I started feeling a lot better and the incredible fatigue was replaced with a new energy, I was actually dancing around, judo walking and laughing. Carol remarked, “I got my husband back.”
“Chemo brain,” is a term used by cancer patients and medical staff to explain the effects of chemo on the brain. It is also called the chemo shuffle. After you start chemo you become aware of the fatigue that hits the body and you know it is affecting the brain but the onset is so slow it is hard to gauge the total effect. But after you quit chemo and “normal brain” function returns, in a week or so, the contrast is readily apparent. For me, mentally I quit planning, making notes and sketching and now those things are back.
Creativity, most days, was just not there.
It was so hard to plan anything; we had no idea how I was going to feel from day to day. One day I would feel good and the next I would be sicker than a dog. We didn’t feel that we could go anywhere.
So we have been taking advantage of “my new wellness and energy”, a week ago we took a mini-vacation to Yellowstone National Park. We had a great time, got to see Old Faithful, first time for me. But I missed seeing the Grand Teton’s again, for the 3rd time, there were clouds to the ground… one of these days I hope to see them.
My lung problems make for difficulty moving around and we avoid going up steps or slopes. I have a portable oxygen machine that makes a lot of difference, I put it in a backpack and I can stroll along pretty well on flat ground. One drawback, the battery only lasts for 4 hours… I need an extra battery.
I have been working around the house, building stuff, drawing sketches, making plans. Fun to be out in the shop again, actually working! I got a helmet powered full-face respirator to filter the air so I can make up a batch of man glitter (saw dust). The helmet makes me look a little like Darth Vader, but best of all it fits over the oxygen hoses.
My oncologist has suspended any further chemotherapy until we can figure out what is going on with my lungs, there has been increased scarring of the lungs, called pleural effusion, over the past two years, resulting in a decrease in lung capacity by more than 50%. I saw a pulmonologist; he put me on a steroid to reduce inflammation and a COPD inhaler. Finished the steroids, have a pulmonary function test and visit the pulmonologist this Wednesday. Appointment with the oncologist on the 28th of this month.
Not sure what the future holds, Carol and I have been talking about getting a referral to either the Mayo Clinic or Cancer Centers of America for a consult, perhaps that would be in October. Being larger cancer centers would allow them to prescribe chemotherapies that our local oncologist cannot prescribe. (Medicare is more likely to pay for newer/experimental treatments prescribed by major research centers that have large cohorts.)
After I got the diagnosis of cancer, Carol told me to avoid looking up sh*t about cancer on the internet. (Use of swear words, they say, is a mark of intelligence.) Lung cancer prognosis is pretty bleak, usually less than 6 months and she was concerned that it would be too depressing; my cancer has been stable for 17 months. I was a good husband and took her advice until recently. I have started doing some research on alternative chemotherapies… seeing what is available. There are a dozen or so targeted chemotherapy drugs that are relatively new and a few cocktails (multiple drugs) that seem to hold some promise. There were some accounts of patients with lung cancer that have been living with their cancers for 10 years, so there is hope.
Thank you all for yor continued support, prayers and love.
Love, Van
