The good thing about med care at a larger hospital clinic is that they always have someone on call. I was able to get a small script submitted today for the breakthrough pain med and James is doing well. He's down in the basement mixing and pouring a concrete footing for the new/used/gift of a washer. I'm making beads. Feels like a fairly normal day. Thanks to Mom and Sue for picking up the meds and delivering with some pizza. James is enjoying one and I'm enjoying the other. Yum.
Editing in to reassure all who may worry about James mixing/pouring the many bags of concrete for the footing I took a bead break to help a bit with the mixing while he perfected the pour, perfectionist that he is. It was date night in the cellar. To all who question whether you too could mix a bunch of concrete, you are stronger than you think.
Monday, October 8, 2018
Sunday, October 7, 2018
Pain meds
He's struggling tonight with pain and we're running really low on the break through pain med so I've been trying to stretch it out to get through the weekend. Only two pills left. The extended release pill only lasts 4 of the 8 hours. Tomorrow is a holiday so I'm not sure if anyone will be at the hospital to submit a script. He's sleeping now but I worry when he wakes up what I can do. We were definitely leaning on the break through med very heavily while in NH probably because he was over doing it building the ** doors so we are super short on the supply that was supposed to last a month. We don't see the palliative care person until Friday although I'll call as soon as the office is open. I can't find an after hours phone number. Ahhhhhh. What to do. I don't know what to do. I'm tip toeing around hoping he sleeps until he can take the next extended release pill. We have lots of the extended release but only the two break through. I've been googling whether I can give early or overlap two extended release pills every four hours but can't find anything that says it's ok. It's Sunday night. He's sleeping thank God. I'm waiting and watching. It's torture.
Update we made it through to the correct time for extended release he's taken the pill and is sleeping again. All is ok for now.
Update we made it through to the correct time for extended release he's taken the pill and is sleeping again. All is ok for now.
Clean again
We have a functioning washer in the basement thanks to my sweet thoughtful bro-in-law, Darren Ross, and kind generous local farmer and entrepreneur, Randy Jordan of Jordan Dairy Farm. Delivered and installed, they are fabulous folks. James stayed up late last night test driving with the first couple loads. It's a used front loader. I told James we should put a couple lawn chairs in front for some fun evening entertainment. It's mesmerizing.
Saturday, October 6, 2018
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
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
Saturday, September 22, 2018
Opdivo and life
James was in for the first Opdivo infusion yesterday. Fairly uneventful. We did bloodwork first, saw Dr W (the medical oncologist) asked a bunch of questions then went in for the infusion.
Bloodwork was ok. They're monitoring thyroid and increased the med a bit. As a reminder one lobe was removed during laryngectomy. The Opdivo could also impact thyroid so they've increased the meds. We picked up pain meds and filled a saline script at the hospital pharmacy, nice there is one right in the same building as all we do. The saline is used during respiratory therapy and with a small nebulizer for humidity. Nice that they keep the little saline "bullets" in stock in the specialty pharmacy and also that they're covered 100% by our med insurance. The nebulizer I'd purchased is a "Yoofor" portable steam compressor found on Amazon after reading a million reviews. Funny (or sad) that the med ins covered a slew of Albuterol but not a nebulizer. Makes no sense but luckily it wasn't a crazy expensive piece of equipment.
We'd asked Dr W a couple questions about Opdivo. After chatting with my Aunt (thank you Aunt Rose) I learned that my dear cousin works with clinical trials as a biochemist (I think that's correct Mary?) and is extremely knowledgable about immunotherapy actually running clinical trials. She'd asked if James had a PD-L1 test. We asked Dr W and were told that he had not been tested for it although they could. He said no matter the PD-L1 level shown they would still try Opdivo as it does still work in instances of low PD-L1. It's all a little over my head. I need to do more research and pick Mary's brain a bit more. My newest question would be if the PD-L1 marker is low would an alternate immuotherapy work better or do they all function off of PD-L1 level....
The Opdivo will be administered by infusion every 4 weeks with CT scan every 3 cycles so every 12 weeks. The first CT, we were told, is in most instances very false positive so we won't really know until 2nd cycle is completed at 24 weeks whether the immunotherapy is working. Between now/then we live. We watch for any adverse reactions to the Opdivo including rash, fever, issues with lungs which could mimic pneumonia. So far so good in that we haven't seen any change. Hoping with our entire beings that this will work to keep James going indefinitely.
Mornings are slow. He's resting again now eyes closed wearing the nebulizer mask. Morning meds have been taken and he's liberally coated with biofreeze gel. It's a menthol gel and a miracle for quick relief (lasts 20 min to a half hour). We have tubes all over the house. We put in on mostly left side neck down to shoulder but he's recently wanted more over to the center/right too. I had been buying it in pharmacies, etc, but also found it on Amazon for less $. I can buy 3 tubes at a time which are 4 oz ea for $26.85 with free shipping. Locally I'd been buying smaller 3 oz tubes for $11-14 each, yikes. I swear Amazon is going to take over the world and I'd love to support local business more but when it's tricky to go out shopping and you need medical supplies and money is tight and you can write off Amazon Prime for your business it's a savior. I feel like I'm an Amazon ad.... not.
The mental duress of dueling contemplation, positive thinking that treatment will work vs the alternate is what is most difficult for me. He's doing well, energy levels in a state of flux. I think he has a mental list of everything he'd like to get done. As a self employed Jack of all Trades he'd worked on other peoples houses and our property fell by the wayside so the house is in rough shape. He's been puttering with repairing our windows and doors, painting and rebuilding things. Slowly but surely. Keeping busy in the afternoon/evening. Resting early in the day. Awake on/off with his thoughts through the night. For the first time last night I slept on the couch again, he's in the recliner. It's more comfortable for him to be semi upright for breathing and neck and pain. I slept better on the couch than I had been upstairs because I was waking up on/off worrying about him alone downstairs. Perhaps our new normal.
I'm pushing to finish up overdo bead orders this weekend so that we can leave tomorrow for an impromptu week or so at the NH cabin. We need to escape reality for a bit. James wants to build out a couple doors. I'll assist. Hopefully he'll do a little fishing and we'll enjoy being in the wild. Forgetting reality.
Bloodwork was ok. They're monitoring thyroid and increased the med a bit. As a reminder one lobe was removed during laryngectomy. The Opdivo could also impact thyroid so they've increased the meds. We picked up pain meds and filled a saline script at the hospital pharmacy, nice there is one right in the same building as all we do. The saline is used during respiratory therapy and with a small nebulizer for humidity. Nice that they keep the little saline "bullets" in stock in the specialty pharmacy and also that they're covered 100% by our med insurance. The nebulizer I'd purchased is a "Yoofor" portable steam compressor found on Amazon after reading a million reviews. Funny (or sad) that the med ins covered a slew of Albuterol but not a nebulizer. Makes no sense but luckily it wasn't a crazy expensive piece of equipment.
We'd asked Dr W a couple questions about Opdivo. After chatting with my Aunt (thank you Aunt Rose) I learned that my dear cousin works with clinical trials as a biochemist (I think that's correct Mary?) and is extremely knowledgable about immunotherapy actually running clinical trials. She'd asked if James had a PD-L1 test. We asked Dr W and were told that he had not been tested for it although they could. He said no matter the PD-L1 level shown they would still try Opdivo as it does still work in instances of low PD-L1. It's all a little over my head. I need to do more research and pick Mary's brain a bit more. My newest question would be if the PD-L1 marker is low would an alternate immuotherapy work better or do they all function off of PD-L1 level....
The Opdivo will be administered by infusion every 4 weeks with CT scan every 3 cycles so every 12 weeks. The first CT, we were told, is in most instances very false positive so we won't really know until 2nd cycle is completed at 24 weeks whether the immunotherapy is working. Between now/then we live. We watch for any adverse reactions to the Opdivo including rash, fever, issues with lungs which could mimic pneumonia. So far so good in that we haven't seen any change. Hoping with our entire beings that this will work to keep James going indefinitely.
Mornings are slow. He's resting again now eyes closed wearing the nebulizer mask. Morning meds have been taken and he's liberally coated with biofreeze gel. It's a menthol gel and a miracle for quick relief (lasts 20 min to a half hour). We have tubes all over the house. We put in on mostly left side neck down to shoulder but he's recently wanted more over to the center/right too. I had been buying it in pharmacies, etc, but also found it on Amazon for less $. I can buy 3 tubes at a time which are 4 oz ea for $26.85 with free shipping. Locally I'd been buying smaller 3 oz tubes for $11-14 each, yikes. I swear Amazon is going to take over the world and I'd love to support local business more but when it's tricky to go out shopping and you need medical supplies and money is tight and you can write off Amazon Prime for your business it's a savior. I feel like I'm an Amazon ad.... not.
The mental duress of dueling contemplation, positive thinking that treatment will work vs the alternate is what is most difficult for me. He's doing well, energy levels in a state of flux. I think he has a mental list of everything he'd like to get done. As a self employed Jack of all Trades he'd worked on other peoples houses and our property fell by the wayside so the house is in rough shape. He's been puttering with repairing our windows and doors, painting and rebuilding things. Slowly but surely. Keeping busy in the afternoon/evening. Resting early in the day. Awake on/off with his thoughts through the night. For the first time last night I slept on the couch again, he's in the recliner. It's more comfortable for him to be semi upright for breathing and neck and pain. I slept better on the couch than I had been upstairs because I was waking up on/off worrying about him alone downstairs. Perhaps our new normal.
I'm pushing to finish up overdo bead orders this weekend so that we can leave tomorrow for an impromptu week or so at the NH cabin. We need to escape reality for a bit. James wants to build out a couple doors. I'll assist. Hopefully he'll do a little fishing and we'll enjoy being in the wild. Forgetting reality.
Tuesday, September 18, 2018
Such a rainy day
It's very rainy out today, perfect for James to sleep in and me to catch up with a little work.
We had an appointment yesterday with the palliative care people who seem very nice and supportive. They'll be controlling meds from this point on. They've adjusted pain meds increasing the main one a bit so he's not leaning as heavily on the break through. They're also going to stop the steroid before start of immunotherapy on Friday. We've been told the two contraindicate each other i.e. the steroid could make the immunotherapy slightly less effective and we'd like to give the immunotherapy the best possible chance to work. They're swopping in an antidepressant that they hope will also serve to increase appetite, mood, sleep (so taking at night). I think the one thing we may miss from the steroid is the increased energy, hopefully the improved appetite will continue on with new med. We were told that if the immunotherapy works well for James there is a chance they could add the steroid back in, low dose, to improve quality of life but that would be down the road.
James had two manicotti last night and Phoebe had made a pumpkin pie so he also had two small slices with vanilla ice cream. I can't tell you how wonderful it is to see him eat. Today may be quiet. He'll hopefully be up and puttering. I'll be around the house doing my thing. We have a visitor midday. Not a bad rain day all in all.
Footnote.... we've cancelled visitor, sorry Jen! He's feeling very overtired after all so will continue to rest. Taking it day by day hour by hour minute by minute and in this particular minute he'd like to rest.
We had an appointment yesterday with the palliative care people who seem very nice and supportive. They'll be controlling meds from this point on. They've adjusted pain meds increasing the main one a bit so he's not leaning as heavily on the break through. They're also going to stop the steroid before start of immunotherapy on Friday. We've been told the two contraindicate each other i.e. the steroid could make the immunotherapy slightly less effective and we'd like to give the immunotherapy the best possible chance to work. They're swopping in an antidepressant that they hope will also serve to increase appetite, mood, sleep (so taking at night). I think the one thing we may miss from the steroid is the increased energy, hopefully the improved appetite will continue on with new med. We were told that if the immunotherapy works well for James there is a chance they could add the steroid back in, low dose, to improve quality of life but that would be down the road.
James had two manicotti last night and Phoebe had made a pumpkin pie so he also had two small slices with vanilla ice cream. I can't tell you how wonderful it is to see him eat. Today may be quiet. He'll hopefully be up and puttering. I'll be around the house doing my thing. We have a visitor midday. Not a bad rain day all in all.
Footnote.... we've cancelled visitor, sorry Jen! He's feeling very overtired after all so will continue to rest. Taking it day by day hour by hour minute by minute and in this particular minute he'd like to rest.
Sunday, September 16, 2018
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