Post Radiation
Whole brain and spine proton beam radiation ended about 6 weeks ago and I haven’t posted anything, because I don’t really know what to say and we are just taking it day by day.
Mike has made some progress in some areas (maybe!?!), but still deals with side effects from radiation, medications, and/or disease, or a combination of it all!?! He has had major fatigue, so he sleeps/rests a lot which his body needs.. but unfortunately he isn’t getting quality sleep.
They finally got better control of his headaches with the use of Gabapentin before bed and again in the middle of the night but, this brings with it its own set of side effects like weird dreams and “spacey thoughts”. His appetite has not come back at all and he can’t force himself to eat or he gets major dry heaves, so his weight is hovering around 131-133 which is 30 pounds less that when he started chemo. ☹️ So he is cold all the time unless he’s dressed in three layers!
Mike wants to get outside and walk but hasn’t been able to really do that more than a handful of times because of fatigue. We have had several zoom calls with the palliative care team at Mayo and they are very kind and trying to help, but it is hard over a zoom call, so have scheduled an in person visit June 9th.
They prescribed Olanzapine to be taken at night to try to stimulate his appetite but… Mike had a terrible day the day after taking it and basically slept the entire day and said he felt “intoxicated” so that isn’t going to work for him. They also ordered a nebulizer to thin his mucus to see if that would help with the dry heaves.
One bit of good news is that his eye pressures have come down to normal after stopping the targeted drug and weening off the steroid. We ordered him new lenses for his glasses and although his eyesight isn’t good, it seems to be stable now.
I have people ask me how I’m doing and the “people pleaser” part of me usually just says “good”, but the truth is it depends on the moment and it usually has a lot to do with how Mike is doing and feeling. It’s hard to see the love of your life deteriorate before your eyes and not be able to do anything about it! God willing, we will celebrate 43 years of marriage on August 7 and over half of those years have had the cloud of cancer over them, but I wouldn’t change a thing.
I miss so many things that I used to take for granted: I miss big strong hugs, my pickleball partner, my walking buddy, my travel planner and partner, my popcorn and a movie partner, my chauffeur, pool boy, best advice giver, fun dad and grandpa, my lover and best friend!
Mike is still here and we are so thankful for that, but I know he misses all these things too! He yearns to do the things that made him who he is, but his body just won’t allow it anymore. He is still my best friend and always will be, it’s just different and it’s hard!
We have had lots of family and friends come to visit which is awesome and if you want to visit with Mike at all just check in ahead of time to see how he is feeling and if he is up for it. Thanks for all the texts, cards, prayers, and well wishes. We truly appreciate it! People have asked if the whole brain radiation was worth it or if we would do it again and…we don’t have an answer because things haven’t really changed much. I guess time will tell!?!
James 1:12 “Blessed is the man who remain steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love him.”
We remain steadfast and even though we don’t understand the plan, we trust the planner! In my Bible next to James 1:2 about trials, I have written, “know that trials are meant for my good! The testing of my faith develops perseverance. Painful situations produce character the same way regular exercise produces muscle tone.” I don’t know when I wrote that or who said it, but it’s good advice.
In His love and ours,
Paula
