What I would change if I could start gain.
Breathe - I wasn’t dying at that moment. It felt like it, but looking back I realize I was no different than I was the day before - except my mind was filled with confusion and fear. If I could do it again, I would work really hard to remember I’m not dying immediately and I can’t make good decisions without information and I can’t process information in a state of panic. Breathe.
Patience - I wouldn’t let the physicians and doctors rush me into chemotherapy. They push to react as quickly as possible out of the best intentions…hell maybe they didn’t rush me at all and maybe it was just in my head I was rushing into it. Either way, if I could do it over again I would be patient and only start chemo AFTER I understood what kind of chemotherapy I was going to be treated with and what are the side effects and etc, etc.
Germline genetic test - My general practitioner physician, Dr. Travis Wilkes asked me to get a germline genetic test THREE YEARS before I was diagnosed. He knew my family history, so it made sense. My mother and all three of her sisters died from breast cancer…looking back it wasn’t exactly rocket science to think there was a risk their mutation had been passed to me. But, in an expression of my sage wisdom (more likely fear of knowing) I declined. I remember telling him “why, what am I going to do but worry if it comes back positive?” He replied “but if it does we would test you more often in an effort to catch it early”. I still decline. Three years later - well, declining that offer is definitely one choice I would change if I could do it over. Once I was diagnosed (not with an early stage one diagnosis but because of my sage wisdom I was diagnosed stage four) Dr. Wilkes again suggested genetic testing and this time I wisely agreed. I did mine at Invetea but there are many to choose from. If I had it to do over again I would have done the simple saliva or bloodwork germline genetic testing the first time Dr. Wilkes suggested it.
Biopsy for molecular testing - Now I know all biopsies are not the same. Repeat - all biopsies are not the same! If I had it to do over again I would take the time to find the medical groups/associations/patient advocates, etc so I could learn what molecular profile testing is available. For pancreatic cancer, the place I would turn to is PanCan. PanCan partners with testing providers and the information could have been just what I needed. Their molecular profiling program is Know Your Tumor. However, and its a big however, to perform the molecular profile test one must provide a much larger sample than normally comes with the standard solid tumor biopsy - and they want the biopsy to come from the distant organ if the cancer has metastasized. That would have been really useful info to have before I went in for the biopsy. There is a process to this program and I needed the Know Your Tumor team involved with the GI doc BEFORE the biopsy…not after. If I could do it over I would be patient, research molecular testing for the solid tumor cancer they think I have and I would engage with the testing program to connect them with my GI doc before I had the biopsy.
Cold Gear - This is a HUGE “would do it differently”. If I were starting a platinum chemo again I would absolutely buy and show up at the infusion center with a cold cap, cold gloves and cold socks. No one told me until I got into the infusion center that neuropathy is an extremely common side effect. So much so that its measured every time before starting the next round because if it becomes debilitating then you have to stop the platinum chemo. turns out, wearing “cold gear” during treatment slows blood flow to your extremities…less blood flow less chemo to those areas which is fine because I didn’t have pancreatic cancer in my extremities! Less chemo in your extremities means less chemo damaging the nerves - less nerve damage BAM less neuropathy.
Prepare - Having done the germline testing and knowing any genetic mutations I have which might affect my response to treatment, I would read this book long before I was diagnosed and implement many of McClelland’s recommendations found in “How to Starve Cancer - and Kill it with Ferroptosis”