Let’s Make Some Noise

 It’s been awhile since I last blogged.  Here’s a summary of events for anyone interested, I finally had my PET scan approved and was able to get that done on December 23.  Results weren’t horrible..oncologist said he is, “cautiously optimistic”, so that is a positive.  There was some evidence of healing in several areas of my spine with one spot larger in my cervical, (neck), area. Radiologist and Dr. Gitau both felt it could be healing also instead of progression.  We hope to repeat the scan in 2-3 months, depending on what BCBS and their pencil pushing monkeys decide is needed. I suggested going up to the recommended dosage on my oral chemo from 400-600mg to hit it a little harder and Dr. Gitau very much agreed on that idea.  I initially started on that dose but it bottomed out my neutrophils and white blood cells putting me at high risk of infection. I just completed my first 3 week cycle on that dose and made it through!  I will have labs on Tuesday to see how it affected my counts, but hopefully we will be good to continue at this dose. 

I continue to cherish time spent with family and friends and try to keep my mind in a positive state, although that doesn’t always work and some days the tears just come easier than others. I spend way more time in my bedroom and wearing my bathrobe than I even realized until actually calculating the hours in my week.  I would say most days, I have a good 10-12 hours either resting in bed or on the sofa.  It is just where I am right now.  I do get out occasionally to run errands, go to lunch with friends, or grocery shop.  But the majority of my time is home with my little family. I don’t sleep well and I don’t nap…isn’t that odd?  Maybe if I did, I wouldn’t always be so tired.  I find myself pretending a lot, pretending to be able to do the things I always did..going 90 miles an hour and doing all the things I can fit into the day. I hope to adjust to the meds and get some more reduction in tumors so I can maybe function at a little higher level, but this is where I am at right now.  Then there is chemo brain…it’s a real thing.  I literally forget damn near everything.  

Right now it is all about making memories.  I want to leave my loved ones with lots of happy memories and to that point, Meg and I are planning a girl’s trip to Winnipeg over her birthday in May.  Sean and I are going to one of our little favorite hideaways in Walker, MN for a long weekend in February and we have a couple weekends with Hadley while Mom and Dad are away that I am very much looking forward to.  Big trips in the planning stages are going to the edge of the arctic circle to Churchill, MB for the polar bear migration.  The train ride is 48 hours from Winnipeg and all sleeper cars are booked for October 2023, so that will happen next year. And then there will be Disney early 2025.  So, I’m not planning on leaving this place called earth anytime soon. 

That said, there are so many things to think about and get in order…things that everyone should probably take care of, but don’t because no one wants to think about their own mortality.  There will be no funeral.  I will be cremated and turned into a tree which will be planted at an unknown location as of yet. There will be a celebration of life with food and memory sharing in a simple place for anyone that wishes to gather.  I was raised Catholic, converted to Lutheran and raised my children Lutheran.  Life experiences have moved me away from religion.  I am spiritual and feel closest to God and the universe when in nature which is why I enjoy gardening, hiking, and adventure travel. I don’t know what comes next…but I think it will be something, maybe something I never even imagined. 

There is another item on my to do list.  I wish to completely demolish the US Healthcare system and the power that Insurance companies have to override physicians and deny patients the treatment they need.  There should be no such term as medical bankruptcy. People in this “great” country of ours are losing their entire life savings when they get sick.  Is this the proper way to treat an elder of our society?  Every big task starts with a single step and I hope to figure out how to use my experience and my story along with so many others to create change.  I have no idea where to begin, but something  tells me the path will present itself.  Let’s tear it down.