Dr. Walsh said that James' CT scan looked good so is moving forward with immunotherapy. He's scheduling 4 more treatments then another CT. Woohoo!
VA has paid for the recent appointments including immunotherapy yesterday. We're in the process of transferring scripts to VA too. It ends up that our Tufts insurance was purchased through the MA Health Connector "marketplace" which is federal and VA is also federal and you can't access both so James was dropped from our connectorcare "marketplace" policy. If I earned less money, if we qualified for fully funded Mass Health we could have used both Mass Health and VA. Would have been nice if they had sent a letter to let us know. Maybe a phone call. Maybe if someone had a clue with the 20 phone calls, 60 hours, day spent at the Health Connector office. Ugh. The VA is strongly encouraging me to have some kind of back up healthcare for James. As I can't access a paid policy as a self employed person for us as a family I'm looking into early "retirement" from UMass (worked there 1986-2000 and am vested in the state system) to pick up state retiree healthcare and collect the small state pension most of which would go to paying for the state healthcare which looks fairly expensive. Water under the bridge I suppose and worth it if the treatment is working.
Back to the happy news. James is well. 4th immunotherapy was yesterday. CT looked good (need to read results to see what "good" means). Onward and upward :^)
Friday, December 14, 2018
Tuesday, December 11, 2018
Ongoing health ins saga...
I was told at the end of the MA Health Connector call Friday to check 24-48 hours with the case # supplied to see that James health ins was reinstated. I called Monday and was told the case # did nothing for them as there are many different call centers, that they had no record of the Friday conversation, that they did not know why ins had been cancelled and wanted to try to reset the application which is exactly what the Friday person told me they were doing. I was on the phone with this new person for close to an hour before I finally disconnected saying I had no faith that if I went through the entire process again that anything would be different. When asked this call center person would not give me her name (I'd missed it when she said at the beginning of the call) and also would not transfer me to a supervisor. I feel badly in a way for these call center people as they're probably making minimum wage and dealing with stressed irate people but really? What the heck.
I made the decision to disconnect from call center to go to a local office and speak to someone in person. I needed to look someone in the eye and put a name to a face.
Yesterday afternoon I went to the local MA Health Connector office. I put an hours worth of coin in the meter. I waited 1-1/2 hours to be seen then spent close to 2 hours with a young guy named Angel who looked into every aspect of our situation. He called two supervisors one of whom was off. No one knows why James' insurance was cancelled. Angel is going to continue working on my case and is going to call me with an update today. I've told Angel that James has a terminal cancer diagnosis, we're unable to fill his prescriptions in a timely fashion because they now have to go through the "safety net" for prior authorization, I've told Angel the only current treatment hope is the immunotherapy which appears to be working and the next infusion is Thursday this week. I have not told Angel that the VA is inline to cover the oncology costs as the VA has been stressing to me that they are not an insurance and they should not be the reason that the insurance was cancelled. Will update once I hear back from Angel. What a nightmare.
Surprisingly I did not have a ticket at hugely expired meter.
I made the decision to disconnect from call center to go to a local office and speak to someone in person. I needed to look someone in the eye and put a name to a face.
Yesterday afternoon I went to the local MA Health Connector office. I put an hours worth of coin in the meter. I waited 1-1/2 hours to be seen then spent close to 2 hours with a young guy named Angel who looked into every aspect of our situation. He called two supervisors one of whom was off. No one knows why James' insurance was cancelled. Angel is going to continue working on my case and is going to call me with an update today. I've told Angel that James has a terminal cancer diagnosis, we're unable to fill his prescriptions in a timely fashion because they now have to go through the "safety net" for prior authorization, I've told Angel the only current treatment hope is the immunotherapy which appears to be working and the next infusion is Thursday this week. I have not told Angel that the VA is inline to cover the oncology costs as the VA has been stressing to me that they are not an insurance and they should not be the reason that the insurance was cancelled. Will update once I hear back from Angel. What a nightmare.
Surprisingly I did not have a ticket at hugely expired meter.
Monday, December 10, 2018
Excuse the melt down....
Friday, December 7, 2018
VA and health and health insurance yikes
James is really doing great. He has good energy, appetite is up, sleeping a tiny bit better maybe. In my eyes the immunotherapy is working but we have to wait to see what they say. Next infusion is this week on Thursday.
The VA has been a true blessing. While there is not any financial assistance (yet, still a possibility) they will continue to drop off that mixed food box of things for us to test. We've seen a primary care person who contacted her nutritionist and they has signed us up for deliveries of high protein chocolate Ensure, 3x day for a month was the first delivery. That's a lot of Ensure! While the high protein isn't his fave to drink straight up I've been using it in the choc frappes (1/2 banana, scoop of weight gain protein powder, vanilla icecream, Ensure, little extra choc syrup) and tonight I made homemade chocolate pudding using Ensure instead of milk. It was the old Betty Crocker recipe which has egg yolks so extra extra protein. Very rich and delicious. We all had a bowl hot off the stove top with a scoop of vanilla icecream. Mmmmm.....
Little health insurance trauma yesterday. I was calling in a couple prescriptions and was told by one pharmacy that James insurance was cancelled so they could not fill the script. I went to pick up a prescription at the other pharmacy and they also didn't fill (didn't call me either) because the insurance was no longer active. I called the insurance co freaking out. They said it was cancelled through the MA Health Connector and I had to talk to them. My ins was still active and we're on a family plan. James is in the middle of cancer treatment. He'd just had a CT scan. He's scheduled for immunotherapy infusion this coming week. We have 4 prescriptions that we need to fill. My brain exploded and I was flipping between swearing and crying on the phone. The MA Health Connector could not explain to me why his insurance was "terminated". I started worrying it was because we'd gone to the VA clinic. Our insurance is subsidized, would they terminate if they realized that he's a veteran and can get medical care through the VA? I called the VA clinic, our VA rep, and a VA social worker. They all assured me that the insurance should not cancel but also said they would cover his Oncology care, anything he needs through UMass for 6 months. The VA medical team, social workers, and our VA rep are all angels. I called MA Health Connector again today and the insurance drop may have been a blip. A mistake. An oops. They're working to reinstate it. Do they realize our current state of stress and anxiety? Oops sorry. Really? Thank goodness for the VA. They have our backs.
The VA has been a true blessing. While there is not any financial assistance (yet, still a possibility) they will continue to drop off that mixed food box of things for us to test. We've seen a primary care person who contacted her nutritionist and they has signed us up for deliveries of high protein chocolate Ensure, 3x day for a month was the first delivery. That's a lot of Ensure! While the high protein isn't his fave to drink straight up I've been using it in the choc frappes (1/2 banana, scoop of weight gain protein powder, vanilla icecream, Ensure, little extra choc syrup) and tonight I made homemade chocolate pudding using Ensure instead of milk. It was the old Betty Crocker recipe which has egg yolks so extra extra protein. Very rich and delicious. We all had a bowl hot off the stove top with a scoop of vanilla icecream. Mmmmm.....
Little health insurance trauma yesterday. I was calling in a couple prescriptions and was told by one pharmacy that James insurance was cancelled so they could not fill the script. I went to pick up a prescription at the other pharmacy and they also didn't fill (didn't call me either) because the insurance was no longer active. I called the insurance co freaking out. They said it was cancelled through the MA Health Connector and I had to talk to them. My ins was still active and we're on a family plan. James is in the middle of cancer treatment. He'd just had a CT scan. He's scheduled for immunotherapy infusion this coming week. We have 4 prescriptions that we need to fill. My brain exploded and I was flipping between swearing and crying on the phone. The MA Health Connector could not explain to me why his insurance was "terminated". I started worrying it was because we'd gone to the VA clinic. Our insurance is subsidized, would they terminate if they realized that he's a veteran and can get medical care through the VA? I called the VA clinic, our VA rep, and a VA social worker. They all assured me that the insurance should not cancel but also said they would cover his Oncology care, anything he needs through UMass for 6 months. The VA medical team, social workers, and our VA rep are all angels. I called MA Health Connector again today and the insurance drop may have been a blip. A mistake. An oops. They're working to reinstate it. Do they realize our current state of stress and anxiety? Oops sorry. Really? Thank goodness for the VA. They have our backs.
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
Monday, October 8, 2018
What a difference a day makes
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.
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.
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