Exhaustion

I'd written a massive post in an overtired/stressed frame of mind and then deleted in an attempt to keep things more upbeat.... not sure how much more upbeat this is but definitely better than previous.

The week and a half in NH was pretty exhausting/stressful but complex barn style door project for bedrooms is done and James can feel proud of the accomplishment. It was tricky given his current health and my anxiety did not help. I can't say we enjoyed the process. He did however enjoy being able to fish on a couple early evenings and also puttering with other smaller jobs at the cabin and there was great satisfaction in finishing the doors. I think small puttering is what he needs to do when he's feeling up for it. He and we need to take each day as it comes for what we can do and try not to do more. The door project upon reflection was much more than we should have attempted.

We are home, he is sleeping now while I type. I've found if I can get him to sleep in the bed he gets a much better night sleep than in the recliner. It was easier at the cabin where bed was right there than at home where the bed is on the 2nd floor. Most nights here he falls alseep in the recliner while I'm making beads then in the wee hours when I'm done working it's hard to wake/shift upstairs. I need to make more of an effort.

Currently all our cars have kinda major issues but James managed to get one back on the road with an emissions rejection sticker which allows us to drive til fixed and gives us a couple month reprieve. Clothes washer decided to die but an angel of a brother-in-law may have found us a replacement which is a miracle. The ten days at the cabin has honestly put me behind everything in the studio. I miss the days when I had paid time off but am also so thankful to be working from the house so I can be here with James. Angels in my family have given the bank acct an infusion and I can't thank you enough. Someday I'll come up with a way to properly thank.

Back to med update James had no adverse reactions to the Opdivo immunotherapy which is great. No way to know if it's working but will keep up with positive thinking. His energy level ebbs and flows. His pain is fairly well controlled with pain meds and bio freeze gel. We just need to not fall behind as it's difficult to catch up when the intense pain hits. Up at the cabin it was his entire back screaming in pain due to overwork. Now we're back to base of skull through shoulder left side pain, normal cancer pain.

Weight is down again, he's lost close to a third of his former "normal" weight. Food continues to be tricky, things he likes.... Bolthouse Farms mocha protein drink, Kozy Shack tapioca pudding, Grassmilk black cherry vanilla yogurt, apple juice. He did eat some sweet potato last night and I may try some butternut squash tonight. He will eat a little apple crisp with vanilla ice cream as well as pistachio or vanilla ice cream alone. Small quantities of everything. When at the cabin he wanted to have a real meal of steak, potato and corn on the cob. We tried. The food stuck. He couldn't swallow. It was really pretty bad. We reverted quickly back to the things that we know work.

He's smoking a few cigarettes again, by mouth not stoma so more like "tasting" cigarettes. This started pretty quickly after the bad news about inoperable, etc. I'm really torn with the smoking. It's counter to everything I think the immunotherapy is doing for him. In my mind the nicotine feeds the cancer while the immunotherapy is encouraging the body to fight it. But if I were told my cancer was inoperable and that time may be limited and I had a vice which I truly enjoyed and alleviated stress would I allow myself to enjoy it again? Who knows. I do know that he knows I hate it but I also know that the last thing he needs right now is for me to create more stress so I'm internalizing as much as I can.

c'est la vie

We have an appointment this Tuesday with the local VA rep to see if there is anything that can be done to assist as financially or otherwise. We see the palliative care person on Oct 12 to discuss meds and whatever else we need. He goes in for the second Opdivo infusion on Oct 19. We have an appointment with the surgeon between the two, previously scheduled. Honestly not sure if we should keep or cancel. The only thing to discuss is loose voice prosthesis which he's really not utilizing anyways. We'll see....

In the meantime James and I are still here, puttering along, day by day. Thanks for thinking of us.

xxx Beth & James