9am
It was rough week for Kathleen. The pain got very much worse on Monday and continued in unmanaged territory until it got a bit better on Wednesday when they adjusted the dosage. We saw the pain and symptom team, and we have every pain killer available to us. The challenge is that none seem to work for this sort of back pain. Next step is the physiotherapist who helped me with my back issues a few years ago to see if there is anything she can do for Kathleen. Thats Monday.
11am
Chemo day again today. There was some worry that her platelets would be too low as the number was 67 on Wednesday and as a result, we had to go to the cancer center at 9am sharp to repeat the blood work. Kath was pretty anxious about it. She is already in low odds territory and if she had to delay another round of chemo it would just make a bad situation worse. 75 was the cutoff and they bounced back to 81. So another blast of FOLFIRI.
4pm
Bracketed somewhere between the extremes of life and death, we have agency to effect our lives. When you are young and healthy, you have a great deal of potential control over your fate. Not so much when you have cancer. What once presented itself as doable, is moved out of your purview. You do the best you can with what you have, but, every day more and more is taken away from you and whats left is more difficult to work with. In the past Kathleen could adapt to the new rules of the game, but lately it seems the rules are being changed on a daily basis. Thats one of the hardest things right now. Kathleen’s world that she has agency over, is getting smaller and smaller and harder and harder. For a woman who has been so very independent all her life… Well, difficult is an understatement. Simple things like the fact that we always took the stairs to the second floor where the appointments are– now she has to take a wheel chair in the elevator. It’s a hard thing to get used to, but it’s no longer in her control to change that.
That being said, we still managed a trip out the night before. Our good friend Diane has been here this week being a tremendous help fixing up the bathroom to make it accessible for Kathleen. With the wheelchair we managed a short trip out to Home Hardware to look at fixtures. It was a small thing but a big thing in her ever shrinking world.
It is uncomfortable as it looks 🙂 But Orville is happy to be with Diane.
Betty spends a lot of time with Kathleen on the blanket her friend Maria made for her.
—Mike 
in the cancer bubble 
I don’t believe in the supernatural but Betty makes me believe when I look at her. Nobody probably notices it….but I think she’s a reincarnated spirit of good sorts…..you should see how she is around Kathleen….like a nursemaid….and she doesnt seem to be very fond of anyone else but “her charge”. Don’t call me some crazy cat lady either……I realize that animals don’t have human emotions as we know it….but they do have rich emotional lives and if Betty could talk ….she would talk a blue streak….and she be a guest on Oprah. Its too bad Dianne hates dogs….having to sleep on the couch with the dog like that…..you gotta do what you gotta do to, I guess. LOL. As a segway…”.to you gotta do what you gotta do” ……….whatever it takes to make Kathleen mobile/out & about/still getting to where she has to go/still engaged/still shopping……hell if she needs a hellicopter to get her to & fro…..I am sure we can get a on line donation to fund that. Keep on rolling Kathleen!!!
P.S. I like how this particular blog entry went from sucks, sucks, sucks, scary, sucks…..to not so sucky…..shopping for fixtures!
love and hugs…..and more hugs
Hi Mike and Kathleen,
I like your bathroom reno. Mike you have inherited the Apa gene. The Can do spirit. Can do. Kathleen you keep adjusting to new realities. Wish the pain would be better. Hoping the phiso can help
Love Judy
Hi guys,
Glad to hear you’ve got handy friends who can help out with the mobility stuff! But you are always talking about great friends and family…you have such great support. I hope the physio proves to be helpful, but I’m sure we’ll hear about it 🙂 I hear its been pretty wintery back home but hopefully spring will emerge soon and who doesn’t love spring?! Birds chirping, buds coming out, flowers popping up 🙂
Sending warm positive energy from SoCal.
Mo
Hello dear Kathleen, Mike, Elaine, Diane, Orville and Betty, It is a bit of a dark and stormy day here in New Smyrna Beach, Florida, yet the power of the ocean waves as they roll and crash and the palm tress blowing and getting a good dusting from the strong breeze is something to behold. In the background of the thunder birds are chirping. Even in the face of storms there are some beautiful moments and the sun will shine through in time. Thinking of you all and sending big hugs and much love and warm wishes. xo
Hello Kathleen and Mike, I am glad to say that we are now following your blog, thanks to Steve and Sheila. We are thinking of you daily, Janice and Mark
________________________________
Hi Kathleen and Mike,
I hope the physiotherapy helps you Kathleen.
May the increasing daylight brighten your spirits.
Thinking of you,
Anita
thinking of you Kath, Mike and Elaine on this Easter sunday.
Dear Kathleen and Mike,
We’ve been away for a week, so just catching up with your news. As always wherever we may be, you are as ever in our thoughts. You have so much love around you, Betty is something else! The joy they must bring you! Glad to hear you had a wonderful Easter dinner with Drew and Richard. With Elaine at the helm, it must’ve been scrumptious! Thinking of you, hope the therapy has helped. Hope to visit soon, hugs, Terry and Colleen