Thursday, November 8, 2018
Today is a good day
Quick note that today is good. Decent nights sleep. Frappe then coffee watching news. Early plastering of the front hall and removing beads from mandrels for me (he doesn't like when I bend the mandrels...) It looks to be a nice day.
Wednesday, November 7, 2018
So long between posts
There are so many days that I've wanted to sit and add a post but to be honest life is currently a roller coaster of feeling good or not and I sometimes wonder if I post every day will I sound completely manic, maybe a little bipolar....
We have great days or not, James will feel good or not, he'll be up rebuilding windows or vacuuming or doing yard work here or next door one day and the next we'll be up all night struggling with pain or breathing or just lack of sleep. Hard to know how.
He's back to sleeping on the recliner and I'm back to sleeping on the couch. It's ok, still feels a little dysfunctional but works for us. He's comfortable and I'm accessible.
The Mellor family cabin is closed for the season. I can't recall how much I'd talked about it but we ended going up 3 times during the summer/early fall season to do work. Probably a month away combined. It was difficult for me to be away from my bead work and I do feel like it impacted income but it was good for James to be able to push through the work projects that he felt were outstanding. The cabin is closed up now and we can relax knowing the work is done.
I'd contacted the local VA to see if we could get assistance, financial or otherwise. James was an MP dog handler in the Army in CA and Germany back in the 80's. Gathering all the necessary paperwork and records to submit took me forever but it's done. I think that also ate away at my productive work time but hopefully it'll result in some kind of benefit. Only time will tell and our local VA rep is so very nice and helpful.
The VA rep talked us into taking a food box knowing finances are tight. I pushed back for a while because we really aren't eating much and I was envisioning it being very wasteful. Surprisingly I think it'll be wonderful. She brought over a massive box and bag of food stuff keeping in mind his issues with swallowing. The benefit being that James can try all kinds of new things without us spending any money. If he likes it great. If he doesn't we haven't lost any money. It's also small amounts of a lot of different things to test. Donations to the VA are through a local Hannaford. Last night we tested a small half butternut squash quiche. James has never been a quiche guy but he selected it and I heated it. The texture was perfect to swallow and he really enjoyed the flavor. He didn't eat a massive amount but a small slice, avoiding end crust. Now I know something I could try to replicate or buy at the store. Being able to test different things our food money can be more purposeful and focused. The VA food box has really turned out to be a fabulous monthly benefit.
The VA is still working on possible financial benefit, there are a variety of different possibilities including medical, disability, aid and assistance and even perhaps a pension. Again, time will tell and I'm trying not to assume anything will come of it. If it does it will be fabulous and if not it gave me a chance to organize and review paperwork and records. I've been able to contemplate our monthly financial responsibilities with an eye to reducing/simplifying. I've also been able to organize my own records for social security, retirement accounts, pension, etc. All very useful in the end.
James has had the first two immunotherapy treatments and the third will be next week. Again (I think I mentioned previously) there is no way to know if it's working for him to hold/reduce current cancer recurrence. They say we won't truly know until after the sixth treatment which is still months away. He does feel pretty lousy after each treatment for a couple days. Almost like he has the flu so we need to remember to plan on rest/recover post treatment.
I continue to harp about the smoking. I spoke to the palliative care person on the phone the other day about meds and brought it up again. My thoughts are if we know we're near the end... if he only has months to live, fine, smoke a pack a day. But. If we are banking on this immunotherapy treatment being successful and extending life and the cancer was caused by the smoking doesn't it defeat the purpose of doing the immunotherapy? When I mentioned to the palliative care person in front of James that he was smoking a few cigs a day again and she said it's a "quality of life thing" he started smoking more. What the heck. I wish I had never said a thing. When I mentioned to the oncology NP she said it could introduce new cancer sites. Ugh. So just this week on the phone I've asked palliative care to discuss with oncologist as it doesn't sound like they're on the same page. I almost feel like the palliative care person is a hospice nurse in which case why the heck are we doing the immunotherapy. I assume they've talked because a palliative care appointment has been added after we see the oncologist next time we go in for treatment. Hoping they've made some kind of decision about whether it's a good thing (quality of life) or not (extending life) and I'll try rest my brain.
Palliative care has been wonderful however with managing current pain, anxiety, sleep, etc. I shouldn't bash them too much. We also still use a boat load of the bio freeze gel putting it on every hour or two around the clock. I need to order more. Gift giving may be simple this holiday season.... bio freeze and chocolate ensure. Ahhh and yum.
Speaking of ensure I almost forgot to mention that he's gained a couple pounds back. Other than eclectic food box from VA the current food protocol (tapioca pudding has fallen by the wayside) is using our old blender for chocolate frappes 3x a day made with a banana, an original chocolate ensure, a few scoops of vanilla ice cream, a scoop or two of GNC vanilla weight gain protein powder, and a little extra Hershey's chocolate syrup. He loves it, it's really pretty delicious.
Saga of the car.... can't recall if I'd mentioned that James was able to do what Midas guy was not and replaced the brake pads and rotors on my ancient Subaru so that it passed the MA inspection and is legal to drive on the road again. James who will keep a 20 year old beast of a Subaru on the road is my people and I love him. Midas guy that perfers to work on new cars doing oil changes and 30k mi check-ups is not my people. Good to know.
Saga of the washer.... the used washer gifted to us was fabulous for a week and I did lot's of laundry. Then the front loader door locked with error and we were unable to open so laundry was hostage. I ordered a fairly expensive part for James to repair (his choice) he puttered for a few weeks got door open thought everything was functioning tried again and same error door locked washer is junk arghhhhh.... my beautiful sisters and Mom are currently in the process of gifting us with a beautiful new simple top loader Maytag. It's delivered next week and we will once again be clean. We are a little grungy right now but getting by. Between now/then we will work on removing first old broken washer sitting in yard and second old broken washer sitting in basement (on beautiful new concrete slab) and maybe even old broken freezer which has been taking space in basement for 20 years. An old broken cleanse so to speak. I may look for more big metal things to purge.
I think that's about it. Day to day we are getting by. It's a roller coaster. One minute we're stellar and running errands and drinking frappes and holding hands. The next minute I'm watching his chest to make sure he's breathing ok while sleeping. Conversation is still reading lips and written word and that's ok. I'll take any kind of conversation :^)
Hope you're well. Thanks for checking in! xxoo Beth and James
We have great days or not, James will feel good or not, he'll be up rebuilding windows or vacuuming or doing yard work here or next door one day and the next we'll be up all night struggling with pain or breathing or just lack of sleep. Hard to know how.
He's back to sleeping on the recliner and I'm back to sleeping on the couch. It's ok, still feels a little dysfunctional but works for us. He's comfortable and I'm accessible.
The Mellor family cabin is closed for the season. I can't recall how much I'd talked about it but we ended going up 3 times during the summer/early fall season to do work. Probably a month away combined. It was difficult for me to be away from my bead work and I do feel like it impacted income but it was good for James to be able to push through the work projects that he felt were outstanding. The cabin is closed up now and we can relax knowing the work is done.
I'd contacted the local VA to see if we could get assistance, financial or otherwise. James was an MP dog handler in the Army in CA and Germany back in the 80's. Gathering all the necessary paperwork and records to submit took me forever but it's done. I think that also ate away at my productive work time but hopefully it'll result in some kind of benefit. Only time will tell and our local VA rep is so very nice and helpful.
The VA rep talked us into taking a food box knowing finances are tight. I pushed back for a while because we really aren't eating much and I was envisioning it being very wasteful. Surprisingly I think it'll be wonderful. She brought over a massive box and bag of food stuff keeping in mind his issues with swallowing. The benefit being that James can try all kinds of new things without us spending any money. If he likes it great. If he doesn't we haven't lost any money. It's also small amounts of a lot of different things to test. Donations to the VA are through a local Hannaford. Last night we tested a small half butternut squash quiche. James has never been a quiche guy but he selected it and I heated it. The texture was perfect to swallow and he really enjoyed the flavor. He didn't eat a massive amount but a small slice, avoiding end crust. Now I know something I could try to replicate or buy at the store. Being able to test different things our food money can be more purposeful and focused. The VA food box has really turned out to be a fabulous monthly benefit.
The VA is still working on possible financial benefit, there are a variety of different possibilities including medical, disability, aid and assistance and even perhaps a pension. Again, time will tell and I'm trying not to assume anything will come of it. If it does it will be fabulous and if not it gave me a chance to organize and review paperwork and records. I've been able to contemplate our monthly financial responsibilities with an eye to reducing/simplifying. I've also been able to organize my own records for social security, retirement accounts, pension, etc. All very useful in the end.
James has had the first two immunotherapy treatments and the third will be next week. Again (I think I mentioned previously) there is no way to know if it's working for him to hold/reduce current cancer recurrence. They say we won't truly know until after the sixth treatment which is still months away. He does feel pretty lousy after each treatment for a couple days. Almost like he has the flu so we need to remember to plan on rest/recover post treatment.
I continue to harp about the smoking. I spoke to the palliative care person on the phone the other day about meds and brought it up again. My thoughts are if we know we're near the end... if he only has months to live, fine, smoke a pack a day. But. If we are banking on this immunotherapy treatment being successful and extending life and the cancer was caused by the smoking doesn't it defeat the purpose of doing the immunotherapy? When I mentioned to the palliative care person in front of James that he was smoking a few cigs a day again and she said it's a "quality of life thing" he started smoking more. What the heck. I wish I had never said a thing. When I mentioned to the oncology NP she said it could introduce new cancer sites. Ugh. So just this week on the phone I've asked palliative care to discuss with oncologist as it doesn't sound like they're on the same page. I almost feel like the palliative care person is a hospice nurse in which case why the heck are we doing the immunotherapy. I assume they've talked because a palliative care appointment has been added after we see the oncologist next time we go in for treatment. Hoping they've made some kind of decision about whether it's a good thing (quality of life) or not (extending life) and I'll try rest my brain.
Palliative care has been wonderful however with managing current pain, anxiety, sleep, etc. I shouldn't bash them too much. We also still use a boat load of the bio freeze gel putting it on every hour or two around the clock. I need to order more. Gift giving may be simple this holiday season.... bio freeze and chocolate ensure. Ahhh and yum.
Speaking of ensure I almost forgot to mention that he's gained a couple pounds back. Other than eclectic food box from VA the current food protocol (tapioca pudding has fallen by the wayside) is using our old blender for chocolate frappes 3x a day made with a banana, an original chocolate ensure, a few scoops of vanilla ice cream, a scoop or two of GNC vanilla weight gain protein powder, and a little extra Hershey's chocolate syrup. He loves it, it's really pretty delicious.
Saga of the car.... can't recall if I'd mentioned that James was able to do what Midas guy was not and replaced the brake pads and rotors on my ancient Subaru so that it passed the MA inspection and is legal to drive on the road again. James who will keep a 20 year old beast of a Subaru on the road is my people and I love him. Midas guy that perfers to work on new cars doing oil changes and 30k mi check-ups is not my people. Good to know.
Saga of the washer.... the used washer gifted to us was fabulous for a week and I did lot's of laundry. Then the front loader door locked with error and we were unable to open so laundry was hostage. I ordered a fairly expensive part for James to repair (his choice) he puttered for a few weeks got door open thought everything was functioning tried again and same error door locked washer is junk arghhhhh.... my beautiful sisters and Mom are currently in the process of gifting us with a beautiful new simple top loader Maytag. It's delivered next week and we will once again be clean. We are a little grungy right now but getting by. Between now/then we will work on removing first old broken washer sitting in yard and second old broken washer sitting in basement (on beautiful new concrete slab) and maybe even old broken freezer which has been taking space in basement for 20 years. An old broken cleanse so to speak. I may look for more big metal things to purge.
I think that's about it. Day to day we are getting by. It's a roller coaster. One minute we're stellar and running errands and drinking frappes and holding hands. The next minute I'm watching his chest to make sure he's breathing ok while sleeping. Conversation is still reading lips and written word and that's ok. I'll take any kind of conversation :^)
Hope you're well. Thanks for checking in! xxoo Beth and James
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