I had a PET scan this past Monday. My lay interpretation of the text results posted by that evening sounded positive to me. Yesterday I met with my oncologist for his professional read. He confirmed my initial impressions that compared the November 2018 and July 2019 scan results:
- the metastasis in my bone is “grossly” unchanged over the period. My oncologist has described the lesions as mostly “dormant” based on a lowered alkaline phosphatase level in large part from my monthly x-geva injections to harden my bones and prevent additional loss.
- there is a no increased mass growth in the gastric system, though there is some soft tissue thickening in the stomach.
- no cancer has spread to other organs at this time.
- I continue to have some “pleural effusion” or fluid on my lungs.
It’s always good for your oncologist to be so pleasantly surprised at the results, especially when my prognosis in August of 2017 was 3 to 6 months!
The “hole” I need to get out is the extreme fatigue, nausea, and weight loss over the past few months – for the most part the result of chemotherapy.
So in my conversation yesterday with the oncologist, we don’t talk about prognosis anymore, but rather I frame my questions as “on the assumption I am going to be around for another year” what can I do to better my quality of life. In the past month:
- had blood transfusions to increase my hemoglobin levels to near normal.
- continued with my regular at home lung drains.
- began B-12 injections.
- realized my outdoor activity is going to be limited until September or so, given the brutal heat this summer. I am making arrangements to visit the Touro Wellness Center to use a treadmill, stationary bike, and such. This activity was delayed by Hurricane Barry and intense fatigue.
- eating red meat like crazy, taking iron pills, drinking Ensure and such.
- I need to put on 10-15 pounds. To that end, I am now taking a steroid and medical cannabis pills. I am already noticing an increase in appetite and reduced nausea!
- I continue to be off of chemotherapy in favor of immunotherapy. The latter seems to be holding the cancer in check and the side effects are much, much less.
- And based on all of the above, I plan to spend the cool (relatively speaking) of the early mornings and evenings to get back outdoors a bit.
Some six months ago, my oncologist told me the possibilities my cancer going into remission was so small, it was not even worth proposing a percentage. I am not terribly interested in debating that point, and am wholly comfortable I will receive regular treatments for the duration. As one of my favorite affirmations notes “I will get well not out of a fear of dying, but the joy of living” and knowing that I am held in the hands of my God.
I remain grateful to my best friend and wife Emma who has been my rock, along with my family and friends. I know too that my faith community and all of the wonderful studies, social groups, and services are key to my continued recovery.
I am blessed, humbled, and truly grateful.