February 21, 2023
These past almost eight months have had me in a state of semi normalcy. Again, a relative term, what is normal? Setting the alarm on my phone to remind me to take my daily meds, the every six weeks blood work and 3 month PET/CT is vastly different from the previous six+ years of IV treatments. My previous scans ranged from every six weeks to every twelve depending on the treatment and whether I was participating in a clinical trial. Same goes for blood work, every week to every three weeks. I give thanks every time my port is accessed as the veins in my hands and arms are virtually missing in action and scary looking bruises can appear as if by magic. Wearing long sleeves year round is now a fashion statement in my book as are pants which can stretch and shrink depending on the current treatment.
Recently, I was asked to give a patient perspective talk for the good people at Foundation Medicine, Inc. As I was preparing, I revisited the past six and a half years. Reading old blog posts and looking at pictures since my diagnosis brought back not only memories but some distinct feelings of fear, gratitude, relief, grief, and joy. My trip down memory lane resembled a bumper car bouncing from one scan result to the next and one treatment to the next. I found myself exhausted yet exhilarated by my story. My reemerging theme: “staying in the game long enough for research to catch up.” From receiving my first Comprehensive Genomic Profiling report from Foundation Medicine to today, my medical team has continued working to find the weak spots where my cancer is vulnerable. We’ve tried standard of care treatments and out of the box treatments, all have done their part to get me to where I am today. But, as my dear-dear friend Dana, who is fighting his own fight, recently stated: “ It’s lots of work trying to get some more life.”
On a more trivial note, most of my hair is growing back. One of the side effects of EGFR TKI’s (one of which I am currently taking) can have is a challenging effect on one’s hair. For me this is manifesting in a mass of previously non existent curls viciously competing for space with multiple new cowlicks on my itchy scalp. Also new for me, fighting for the first time in my life to put weight “on”. The old adage of “you can never be too thin” does not apply in this scenario.
My news remains good. I remain stable with no new active cancer according to my January 31 scans. Relief and gratitude are the best words I can come up with but words for these feelings are woefully lacking.
Gratitude to Foundation Medicine for allowing me to share my continuing story of which they have played a significant role. I am inspired by your dedication and blessed by your support.
Gratitude to Dana as he shows us that even though it’s hard, we give it everything we’ve got. Your support of me over the years means the world to me and I’ve got your back as you forge forward with your own story.
AND…Gratitude that we were able to celebrate Ben’s second Birthday with him and his parents!
Life and time. The gifts that keep on giving.