Celebrating Small Victories
We just celebrated me successfully sitting down without assistance from anyone. How SAD is that (celebrating simply sitting down on q big couch nonetheless?.)
Let me — elaborate: lately, some of the most basic tasks have become difficult or rather my mind or body give out before I can do something simple like lift a foot up a step. My body has been weak for a while, but now things seem to be more like neurological deficits, maybe little seizures. This past week was particularly challenging. Luckily we had good friends and family visiting to lend a hand — to help me move from spot to spot and make it to the bathroom or into the house after going outside for some fresh air and vitamin D. Also, to pick me up from lying on the floor. Sometimes I just have to find the floor and lie down before my quivering limbs drop my body limp. It doesn’t seem to me like I’m so feeble but it has been bad. And I know I’m still ahead of the curve. Many brain cancer patients are worse off.
Hopefully that helps illustrate how difficult things can be for me/us these days. I wish I could convey more clearly what life is like for Tina and I now. While things are difficult, it seems like we adapt and things aren’t that bad. I shouldn’t speak for her though.
That little celebration was on the heels of a week fraught with accidents and difficulties. Now, as I finish this post, I’m proud to report that I was able to move about the house and ascend the staircase to our bedroom unassisted (always supervised by Tina, but at least on my own.) If that changes we may have to get a hospital bed brought into the living room. Typically, when a person is admitted to hospice it technically means they are no longer pursuing aggressive treatment. Our mindset is aggressive still though, e.g., we are still fighting hard and are also waiting to hear back to see if I got approved for compassionate use of CDX-110.
Some useful equipment we have begun using are a wheelchair, walking cane, handheld urinal, protective underwear and shower chair.
I am proud and thankful to have friends that I regard as close as family and who consider us family. People who came into our home this week and made sure we had all the help we needed; helped keep us calm and relaxed and happy.