Health Update

I mentioned a few days ago that I had CT scans re done early (at 3 months rather than the normal 6 months) due to some growth in one of my tumors. That 3 month scan was done first thing Monday morning (5 days ago) and I saw my local oncologist on late Wednesday afternoon. I knew moving here to rural Montana was what we wanted to do. The down side is rural medicine. I am 30 minutes from the oncology center where I am seen and equidistant from the hospital. Things fall through the cracks. I am meticulous about being an advocate for my own health care. Luckily I have a Bachelor’s of Nursing degree that helps me navigate some of the craziness that is a journey with terminal cancer. I can’t imagine if I were a 70 something woman with no medical background whatsoever. I honestly don’t think I would still be here, to be quite honest. Anyhow, I got my reports from the radiologist a few hours before I left for my appointment with my oncologist on Wednesday. He basically put out measurements of my two larger pelvic tumors (of which there are three – it is the smallest of the three biggies that is showing growth) and said there was no change. HOWEVER, the one tumor that was in question, he failed to mention on the report AT ALL. I noticed this right away. I waited over an hour to see my oncologist, thanks to a late day appointment, where everyone is behind schedule by then. I told her what I noticed and she agreed…the radiologist had completely dropped the ball on my CT scan reading. Of course he was unavailable to be reached. The doctor sent me a text that night at 11 pm telling me she was giving him until the end of the week to get back to her or she was shooting my scans to another radiologist. She also stated she would make sure my nurse navigator, which seems to change monthly (not a good thing) would get everything to the Mayo Clinic so they had all my files and scans in case I needed to head there again.

Today I received a call from an oncology nurse practitioner whom I had never seen before but is attached to my local oncologist. She had talked to a different radiologist, one who had read the last several CT scans on me, and he said that the tumor had indeed grown from the Nov CT scan until the Feb one. Unfortunately, they still have to get ahold of the original radiologist who did my report to have him write an addendum and fix the report so it can be sent to the Mayo Clinic. He is still unreachable so it will most likely be next week before that happens. My nurse navigator is supposed to then talk to the Mayo Clinic and see if this is enough of a reason to be seen there. If so, I am going to have to head there for another appointment and to talk about the next step…most likely going back onto a chemo regimen. I have talked to Rich, and if this can wait, I would like to do our trip to Africa in June, knowing that my traveling days may be very curtailed after that, depending on the treatment and how I react. It also may mean stepping away from the fire department at some point. This has always been in my peripheral mind’s eye…knowing that the other shoe would drop. I don’t know if that is quite where we are yet, but we are heading in that direction. Hopefully we will know more about the plan of action in the next couple of weeks. We leave Wednesday to head to Omaha and Kansas City to be with our Joe’s 2nd family – his widow, friends, and former co-workers on the anniversary (such a bad word for this date) of his death. It will be 4 years. My body seems to know that and my emotions are a total roller coaster, so the timing of this cancer issue couldn’t be worse (not that there is ever a good time.). Anyhow, I have a lot going on in my head and my heart right now, so please know I may just not want to talk about any of this right now until we have a plan. I am always so much better when there is a plan in place. I have had such a good run over the last 5 years. I have been leading such a blessed life considering I have a terminal illness. It might be time to pick up the heavy duty sword and shield again. I will post when I know more.