The extra week between treatments ended up not working out. This is because I spent that week fighting a terrible virus that affects the sinuses and lungs. I medicated myself with Mucinex that week and was OK to go to Chemo by myself today. Because, guess what, I gave the virus to Vicki who missed work for most of the week fighting the aforementioned virus.
She is doing better today, but still not up to work or much of anything right now.
I am having my usual side effects on the day of Chemo. Staying focused on managing the side effects is the best I can do. I had to stop the anti-nausea patch because it gave me a rash, so my options are more limited than last treatment. I will persevere.
My Oncologist and I talked about changing the treatment to allow Vicki and I to get an RV and travel. He indicated I could go on maintenance which could extend the time between treatments to a month or more. I like the sound of this, but it does not cure my cancer or even make me cancer free. That's something to think about. The last time we had a break in treatment the cancer metastasized to my lungs, which got me back in this heavy chemo.
So...it seems like a gamble to me. I could do OK or the Cancer could move to my liver or another vital organ. It will not happen till we have another scan and maybe even take a shot at freezing the two small masses in my lungs. We'll see.
Hang in,
RT
Friday, March 24, 2017
Wednesday, March 15, 2017
Somehow I feel like "Alice's Restaurant" should be playing in the Background
Well, Well, Well, Well, Hell,
So.... I received a check for the 10% they want to give me. It was for back months from Jan of 2017. It was minimal. In the meantime the Doctor from the VA called me today to ask about my prescriptions. I am pretty sure he already had that info but I gave it to him again. He may be a little clueless as to how his organization works. When I told him I had already been sent their final decision and that it was just the minimum amount he stated he didn't know that. DUH!!!
On top of that I had to deal with the Social Security folks as well. I got the forms I needed to sign up for Part B from a phone call with the SSA in New Mexico. I downloaded the forms, filled them out as instructed, including getting a signature from Vicki's work proving I had coverage for the last two years. I explained to the lady that had I not had coverage I would have been dead. I don't think she got the joke.
Anyway, the paperwork needed to be rushed so I decided to take it to the SSA office out in Mesa. This was the office I signed up for Social Security at 2 years ago. This was my first mistake. The office moved to a bigger and much less friendly location. Instead of a comfortable waiting area and open desks behind a short wall, the new building features an armed guard,(who we shall refer to as Colonel Clink throughout the rest of this post) in spite of the fact that he was a late 20s to mid 30s hispanic mail in full regalia including bullet proof vest, pepper spray and glock sidearm.
This guy really got on my nerves. You weren't allowed to even bring in a bottle of water to the waiting area. Oh, let me tell you about that. Instead of any kind of decent chairs they have a few rows of all metal chairs, noted for their discomfort and really hard on the backside and back. I felt sorry for some of the folks older and more debilitated than me.
The whole place felt like a prison waiting room and the atmosphere seemed hostile to me and I let them know it. They were not amused. The guard came over to me and I told him that I had nothing to say to him and I didn't want to hear anything from him either. That went over like a lead balloon. In the end I told him if there was any problem it was with him and not me. Yea, I made a lot of friends there.
After almost two hours I was called to one of the windows that are placed around two walls of the small holding area. I expressed my concerns to the lady at the window and my disappointment at their customer service and lack of hospitality. She apologized and then a little later told me she did not want to hear any further negative comments from me. What a sweetheart. She did get my paper work going and help me with a logon issue with their website. It was obvious that she was good at her job, but like the guard needed some help with desk side manner.
The good news is that I did not get kicked out or arrested. The bad news is that for whatever reason the social security office now thinks it needs an armed guard and a less than hospitable attitude. And just for the record, No one likes being given petty bullshit orders and treated like cattle. So I am happy I said something.
These folks need to understand that they work for us, we don't work for them. Our tax dollars pay their wages and benefits. They don't pay our Social Security. We paid for years into the system and are just trying to get some of our money back.. No one should have to put up with their petty crap. I will not be returning to that place for any reason. I don't have the time or patience to do that again.
While all this is going on I have had to switch computers. My HP finally bit it. It can take up to four hours to fix it's software glitches to just to get it to boot up. I don't have time for that either. After seeing a news article about a shop in Tempe that rebuilds Mac computers I went on line and found the Apple Exchange. They had a refurbished MacBook Pro, 15 inch with the Retina Display. That's what I am using for the first time on this post.
The laptop was three times the price of the new HP we bought at Best Buy a couple of years ago. I think it's going to be worth it. It is lightening fast in comparison to the now defunct HP. It will take me some time to get used to it as it seems most everything is deliberately backwards from the windows environment. I hope I still have enough geek in me to learn how to use all of this machine's capabilities.
Oh and we went and looked at an RV after all this other stuff. That didn't work out as we planned. The son of the owner balked at letting us drive the unit and have it checked out by a mechanic. It got a little sideways and we left without buying the RV. I guess this just wasn't the one of us.
This was the longest day I have spent out and about in months and at the end of the day I was exhausted. It started at 6 AM when we left for Vicki's work and ended a little after 6 PM when we got home. I did enjoy the early driving (the 300 owns the freeways) but by the time we were driving from far north Phx to Sun Lakes I was beat.
All in all a somewhat productive day for an old geezer in chemo.
I hope your days go a little better than mine.
Hang in there,
RT
So.... I received a check for the 10% they want to give me. It was for back months from Jan of 2017. It was minimal. In the meantime the Doctor from the VA called me today to ask about my prescriptions. I am pretty sure he already had that info but I gave it to him again. He may be a little clueless as to how his organization works. When I told him I had already been sent their final decision and that it was just the minimum amount he stated he didn't know that. DUH!!!
On top of that I had to deal with the Social Security folks as well. I got the forms I needed to sign up for Part B from a phone call with the SSA in New Mexico. I downloaded the forms, filled them out as instructed, including getting a signature from Vicki's work proving I had coverage for the last two years. I explained to the lady that had I not had coverage I would have been dead. I don't think she got the joke.
Anyway, the paperwork needed to be rushed so I decided to take it to the SSA office out in Mesa. This was the office I signed up for Social Security at 2 years ago. This was my first mistake. The office moved to a bigger and much less friendly location. Instead of a comfortable waiting area and open desks behind a short wall, the new building features an armed guard,(who we shall refer to as Colonel Clink throughout the rest of this post) in spite of the fact that he was a late 20s to mid 30s hispanic mail in full regalia including bullet proof vest, pepper spray and glock sidearm.
This guy really got on my nerves. You weren't allowed to even bring in a bottle of water to the waiting area. Oh, let me tell you about that. Instead of any kind of decent chairs they have a few rows of all metal chairs, noted for their discomfort and really hard on the backside and back. I felt sorry for some of the folks older and more debilitated than me.
The whole place felt like a prison waiting room and the atmosphere seemed hostile to me and I let them know it. They were not amused. The guard came over to me and I told him that I had nothing to say to him and I didn't want to hear anything from him either. That went over like a lead balloon. In the end I told him if there was any problem it was with him and not me. Yea, I made a lot of friends there.
After almost two hours I was called to one of the windows that are placed around two walls of the small holding area. I expressed my concerns to the lady at the window and my disappointment at their customer service and lack of hospitality. She apologized and then a little later told me she did not want to hear any further negative comments from me. What a sweetheart. She did get my paper work going and help me with a logon issue with their website. It was obvious that she was good at her job, but like the guard needed some help with desk side manner.
The good news is that I did not get kicked out or arrested. The bad news is that for whatever reason the social security office now thinks it needs an armed guard and a less than hospitable attitude. And just for the record, No one likes being given petty bullshit orders and treated like cattle. So I am happy I said something.
These folks need to understand that they work for us, we don't work for them. Our tax dollars pay their wages and benefits. They don't pay our Social Security. We paid for years into the system and are just trying to get some of our money back.. No one should have to put up with their petty crap. I will not be returning to that place for any reason. I don't have the time or patience to do that again.
While all this is going on I have had to switch computers. My HP finally bit it. It can take up to four hours to fix it's software glitches to just to get it to boot up. I don't have time for that either. After seeing a news article about a shop in Tempe that rebuilds Mac computers I went on line and found the Apple Exchange. They had a refurbished MacBook Pro, 15 inch with the Retina Display. That's what I am using for the first time on this post.
The laptop was three times the price of the new HP we bought at Best Buy a couple of years ago. I think it's going to be worth it. It is lightening fast in comparison to the now defunct HP. It will take me some time to get used to it as it seems most everything is deliberately backwards from the windows environment. I hope I still have enough geek in me to learn how to use all of this machine's capabilities.
Oh and we went and looked at an RV after all this other stuff. That didn't work out as we planned. The son of the owner balked at letting us drive the unit and have it checked out by a mechanic. It got a little sideways and we left without buying the RV. I guess this just wasn't the one of us.
This was the longest day I have spent out and about in months and at the end of the day I was exhausted. It started at 6 AM when we left for Vicki's work and ended a little after 6 PM when we got home. I did enjoy the early driving (the 300 owns the freeways) but by the time we were driving from far north Phx to Sun Lakes I was beat.
All in all a somewhat productive day for an old geezer in chemo.
I hope your days go a little better than mine.
Hang in there,
RT
Sunday, March 12, 2017
Bum's Rush or Efficiency?
OK, I had my compensation exam at the VA on Thursday the 9th. The Doctor examined me and asked many questions concerning my present state. My answers were somewhat complicated because a lot of what I am experiencing now is due to my Chemo and It's side effects. Both Vicki and I felt he didn't get the cancer and chemo thing at all.
He stated that an Echo Cardiogram was required for the compensation board. I couldn't tell him I could remember ever having one. So..he called my Cardiologist's office and tried to get them to fax some more of my files.(I provided several with my application) The desk guy told him he would need a Hippa form signed by me. Vicki and I agreed to go by my heart doctor's office and get them to fax the requested files. As far as I know that happened on that day or maybe a day later.
So you can imagine my surprise when the very next day I received the VA compensation boards official decision which had been mailed from their office in Jansville, Wisconsin on the 7th, a full two days before my exam. WTF?
Unless the VA is in possession of a working TIME MACHINE it seems that they just used some lame formula and gave the lowest rating at 10%. For this reason alone I will be getting some help from an advocate and appealing this decision.
Secondly, their decision completely ignores the fact that my open heart surgery in 2013 delayed the diagnosis of my cancer for a full year. By that time I was late stage 3 and the cancer eventually metastasized to my lungs which now 3 years later I am still being treated for. (excuse the preposition at the end, I am just too lazy these days to go back reconstruct the sentence) This has significantly diminished my life expectancy. I am 3 years into what most oncologists think is a five year window, with no sign of an end game where I don't have Cancer.
You would think they might take this into consideration. Vicki thinks not. I am hopeful that these people can understand that.
Last, I wonder why the left hand of the VA(the compensation board) and the right hand(the PHX VA Hospital) don't communicate effectively with each other. Is this common practice? Is this another example of the VA's disregard for Viet Vets and our issues? Or is this just a mistake which they will correct?
We will see.
In the meantime Vicki and I are getting prepared for retirement. We have a broker coming tomorrow to get us set up with medicare and the supplements we will require to keep my cancer treatments and scans and surgeries and whatever from bankrupting us. We met people during Vicki's chemo that were forced to declare bankruptcy due to medicare not paying the full amount of their chemo treatments.
On the plus side we had our eyes checked today. Vicki's Cataract surgery has been successful and she will not need anything beyond reading glasses for close work. I got new frames and glasses and our insurance covered all but a couple of hundred bucks. This was way better than the last time when we both got exams and glasses.
In geezer tech news, I bought a good microphone to record background music for videos we hope to produce when we go on the road in an RV. I was going to buy a small GoPro camera at Best Buy as well, but it turned out they don't stock the accessory kits in the store. Peter, the salesguy helped me through all my questions about setup,downloading, editing,adapters and attachments. In the end I decided to move up to the second least expensive model called the Hero 5 Session.(I think that's it) It turns out that when I buy the GoPro drone it's camera and stabilizer will work with this model. It seems you need a different mic adapter (at $50 each) if you get the cheapest little GoPro.
Anyway the guy was a great help and after coming home, cussing at my laptop with the very defective windows 8.1 to get the damn thing to start up I was able to record a couple of tracks with my new mic(which won't work with any GoPro I buy) which with Wavepad records with very good quality on this soon to be replaced laptop.
My plan is to go the Apple Exchange in Tempe this coming week and buy a refurbished Mac of some sort. I am done with Microsoft's crummy glitchy software. When we're out on the road the last thing I want to do is spend hours trying to get the damn computer to boot.
We are still searching for an RV. My initial impression of RV dealers is not good. They leave good looking deals on their site long after they are sold to drive traffic to their homepage.
When you request availability on a good looking deal the reply is always SOLD.
Nevertheless we will find one. Vicki is unwilling to commit till we know how we will manage my treatment and if I will be physically able to travel. I believe it will happen.
Alright, that's it. Too chatty tonight.
Hang in there,
RT
He stated that an Echo Cardiogram was required for the compensation board. I couldn't tell him I could remember ever having one. So..he called my Cardiologist's office and tried to get them to fax some more of my files.(I provided several with my application) The desk guy told him he would need a Hippa form signed by me. Vicki and I agreed to go by my heart doctor's office and get them to fax the requested files. As far as I know that happened on that day or maybe a day later.
So you can imagine my surprise when the very next day I received the VA compensation boards official decision which had been mailed from their office in Jansville, Wisconsin on the 7th, a full two days before my exam. WTF?
Unless the VA is in possession of a working TIME MACHINE it seems that they just used some lame formula and gave the lowest rating at 10%. For this reason alone I will be getting some help from an advocate and appealing this decision.
Secondly, their decision completely ignores the fact that my open heart surgery in 2013 delayed the diagnosis of my cancer for a full year. By that time I was late stage 3 and the cancer eventually metastasized to my lungs which now 3 years later I am still being treated for. (excuse the preposition at the end, I am just too lazy these days to go back reconstruct the sentence) This has significantly diminished my life expectancy. I am 3 years into what most oncologists think is a five year window, with no sign of an end game where I don't have Cancer.
You would think they might take this into consideration. Vicki thinks not. I am hopeful that these people can understand that.
Last, I wonder why the left hand of the VA(the compensation board) and the right hand(the PHX VA Hospital) don't communicate effectively with each other. Is this common practice? Is this another example of the VA's disregard for Viet Vets and our issues? Or is this just a mistake which they will correct?
We will see.
In the meantime Vicki and I are getting prepared for retirement. We have a broker coming tomorrow to get us set up with medicare and the supplements we will require to keep my cancer treatments and scans and surgeries and whatever from bankrupting us. We met people during Vicki's chemo that were forced to declare bankruptcy due to medicare not paying the full amount of their chemo treatments.
On the plus side we had our eyes checked today. Vicki's Cataract surgery has been successful and she will not need anything beyond reading glasses for close work. I got new frames and glasses and our insurance covered all but a couple of hundred bucks. This was way better than the last time when we both got exams and glasses.
In geezer tech news, I bought a good microphone to record background music for videos we hope to produce when we go on the road in an RV. I was going to buy a small GoPro camera at Best Buy as well, but it turned out they don't stock the accessory kits in the store. Peter, the salesguy helped me through all my questions about setup,downloading, editing,adapters and attachments. In the end I decided to move up to the second least expensive model called the Hero 5 Session.(I think that's it) It turns out that when I buy the GoPro drone it's camera and stabilizer will work with this model. It seems you need a different mic adapter (at $50 each) if you get the cheapest little GoPro.
Anyway the guy was a great help and after coming home, cussing at my laptop with the very defective windows 8.1 to get the damn thing to start up I was able to record a couple of tracks with my new mic(which won't work with any GoPro I buy) which with Wavepad records with very good quality on this soon to be replaced laptop.
My plan is to go the Apple Exchange in Tempe this coming week and buy a refurbished Mac of some sort. I am done with Microsoft's crummy glitchy software. When we're out on the road the last thing I want to do is spend hours trying to get the damn computer to boot.
We are still searching for an RV. My initial impression of RV dealers is not good. They leave good looking deals on their site long after they are sold to drive traffic to their homepage.
When you request availability on a good looking deal the reply is always SOLD.
Nevertheless we will find one. Vicki is unwilling to commit till we know how we will manage my treatment and if I will be physically able to travel. I believe it will happen.
Alright, that's it. Too chatty tonight.
Hang in there,
RT
Saturday, March 4, 2017
A Little Progress?
I had my normal round of chemo yesterday. Then I stayed up all night with insomnia and finally got to bed about 5:30 this morning. Most of that time was spent looking at RVs on the internet. I have a lot to learn before Vicki and I take to the road in some yet to be determined RV.
By 2:00 this afternoon I finally got out of bed and Vicki made me breakfast, Awesome eggs and Bacon.
So, here's the reason I titled this post a little progress; we got my oncologist to map out some sort of endgame to treatments as tough as what I'm getting now. In addition I get an extra week between treatments for the time being. We also discussed freezing the small tumors in my lungs.
Also in the made small progress category, I have an appointment next week with VA in Phoenix for my Agent Orange compensation exam. I will go gladly, because it will be several months before I get a decision. The VA papers sent to me stated the average time after they had all the info from you and other sources was around 4 months.
So... The world moves on and Vicki and I are trying to move on with it.
Hang in,
RT
By 2:00 this afternoon I finally got out of bed and Vicki made me breakfast, Awesome eggs and Bacon.
So, here's the reason I titled this post a little progress; we got my oncologist to map out some sort of endgame to treatments as tough as what I'm getting now. In addition I get an extra week between treatments for the time being. We also discussed freezing the small tumors in my lungs.
Also in the made small progress category, I have an appointment next week with VA in Phoenix for my Agent Orange compensation exam. I will go gladly, because it will be several months before I get a decision. The VA papers sent to me stated the average time after they had all the info from you and other sources was around 4 months.
So... The world moves on and Vicki and I are trying to move on with it.
Hang in,
RT
Wednesday, March 1, 2017
War of Attrition
This particular hump day finds me waxing philosophical about my condition. It has come to my attention that I am getting weaker with each passing week. I used to be able to do things around the house during the two or three weeks between chemo treatments. That has changed. Now I struggle with the side effects, insomnia, night sweats, and a variety of pretty gross things taking place in my body. But the worst by far is the fatigue and nausea. These two have kicked my butt lately.
I will talk to my doctor on Friday about changing the biologic I am being given with the chemo drugs, it effects my blood in a bad way. In addition I will ask for an extra week before chemo after this treatment.
The homeopathic regimen works while I have supplies, but I am waiting for my next shipment now and don't know when it will get here. This regimen has really helped with the nausea though it does not help with the fatigue. In fact it makes me more tired and dozy that normal. It is worth it to not have the nausea.
Which brings me to point of this post; Fighting Cancer can be a long drawn out exercise. In some cases many years with the outcome being death. I am hoping for another outcome. I would like very much to get rid of this Cancer and get on with my life. It gets down to what gives first, my body and mind or the cancer. I admit to being weary, but not done by any measure.
So... I am fueling my desire to fight on with fantasies of a retirement spent traveling in a small RV with Vicki. Maybe we will even get a dog. We'll see. I am learning a lot from the folks on Youtube. Vicki and I spent a hundred days in a popup camper twenty years ago so we know we like traveling and camping. Now though, we want more creature comforts than the popup provided. I remain hopeful.
Hang in,
RT
I will talk to my doctor on Friday about changing the biologic I am being given with the chemo drugs, it effects my blood in a bad way. In addition I will ask for an extra week before chemo after this treatment.
The homeopathic regimen works while I have supplies, but I am waiting for my next shipment now and don't know when it will get here. This regimen has really helped with the nausea though it does not help with the fatigue. In fact it makes me more tired and dozy that normal. It is worth it to not have the nausea.
Which brings me to point of this post; Fighting Cancer can be a long drawn out exercise. In some cases many years with the outcome being death. I am hoping for another outcome. I would like very much to get rid of this Cancer and get on with my life. It gets down to what gives first, my body and mind or the cancer. I admit to being weary, but not done by any measure.
So... I am fueling my desire to fight on with fantasies of a retirement spent traveling in a small RV with Vicki. Maybe we will even get a dog. We'll see. I am learning a lot from the folks on Youtube. Vicki and I spent a hundred days in a popup camper twenty years ago so we know we like traveling and camping. Now though, we want more creature comforts than the popup provided. I remain hopeful.
Hang in,
RT
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