Friday, June 23, 2017

Finally Passed

Yep, I did it. It took another 2 blood tests to do it, as well as some dietary and medication changes. 

After the 4th failed blood test (my platelets actually went down from 95,000 to 89,000) I went on line and researched low platelets. It turns out that some foods can help, like salmon, tuna and some veggies I can't remember. In addition some foods and medications can hurt. That was the key.

I get headaches every day (which I assumed was a holdover from chemo) and I took Ibuprofen to help. Unfortunately this drug contains Naproxen which suppresses the production of platelets. I also learned that one of the symptoms of low platelets is headaches. What? Yes, I get headaches, take Ibuprofen then get more headaches. Sounds like a vicious circle. 

So I stopped taking Ibuprofen, ate some salmon along with spinach and my last blood test showed a platelet count of 112,000. Twelve thousand more than I needed to meet the Clinical Trial's criteria. The kicker to this is that the trial had officially closed and had I flunked this last time I would have not made the trial.

Luckily I did. On Thursday morning of this week I had a CT scan at Mayo in Scottsdale. Later in the day I met with the clinical coordinator and Hematology nurse at Mayo Phoenix to complete my paperwork and get randomized as to what group I would be in. It is still a little unclear to me which one I will be in, but I believe it will be the group that takes the maximum dosage from the start along with the steroid cream for the main side effect, hand foot syndrome.

I go back this coming Tuesday to Mayo Phoenix to get the medication and review the trial directions. At that time I will know for sure what group I am in.

I feel very fortunate and blessed to have made the Clinical Trial. My latest scan showed growth of two tumors in my lungs along with added fluid between the lungs and lining that surrounds the three sacks of the lungs. If this increases there is a procedure to drain some of the fluid that will need to be done.

So... Next week will be the first week of the rest of my life so to speak.

Keep your fingers crossed for me , will ya?

RT



Friday, June 16, 2017

Well Hell, I Flunked Again

You can tell from the post title that my platelet count is still not high enough.

That's the bad news. The good news is that it went from 82,000 to 95,000. It needs to be 100,000 to pass the test and meet the criteria for the trial. My Clinical Trial Coordinator and my Oncologist at Mayo think it will be good by next Monday.

Because I can't go Tuesday the 20th for a scan (Vicki has an MRI that day) I will go back to the Phoenix Mayo clinic on Monday the 19th for Lab Work and then out to Scottsdale in the afternoon for a scan. It will be another all day affair. Appointments at the Phoenix facility all morning and a late scan (3:45 PM) at Scottsdale. I won't actually get the scan till close to 5 because they give you a bottle of icky stuff to drink for an hour prior to the scan. 

My Coordinator told me that if all goes well I will be able to join the Trial on Thursday of next week. Now I just have to get the nausea medication out of medicare and it'll all be good. I received a call from them today and they denied the drug under my part "D" but approved it under my part "B". I am going by the Walgreens here in Sun Lakes tomorrow to talk to the pharmacist again and see it has gotten down to them yet. 

Vicki's MRI on Tuesday is about her shoulder. She may need surgery for a rotator cuff injury. We hope we can find out and get her shoulder fixed.

It's been so hot that I've held off on working on the RV. We'll see if we can get some work done on it in the next week or two. Now that the RV specialist I hired has finished his part, it's up to us to finish the carpentry and painting that remains. I also have a little plumbing to do in the bathroom as well. We bought a new bathroom sink which I got installed when we moved the shower faucet, but the new RV toilet is still sitting in my living room. I guess that's better than appliances on the front porch like back in Alabama, but I still feel like it's the redneck in me coming back.

That's all the news that's fit to print with one exception. Our middle daughter and her family are moving back to Oklahoma on the 22nd. Vicki is miserable about this, but the kids have a son who is going to be a freshman at OU this fall and they want to be there with him. My son in law and he are both big OU fans.They will live in Norman to be close to our grandson, plus they really like the small town life better than here in Phoenix. 

I want them to be happy and will miss Jamie (my middle daughter) like hell but I think it's the best for them. We will make Norman, OK one of our first stops when we get the RV finished.

Try to stay cool this coming week and be careful out there,

RT

Friday, June 9, 2017

I Flunked My Tests

I went in to the Mayo Clinic in Phoenix on Thursday of this week for tests needed prior to my joining the Clinical Trial for Stivarga. The day was to be filled with interviews with the Trial Coordinators, signing consent forms and a series of basic lab tests along with an EKG and a Cat Scan.

They give you the lab tests in the morning in order to determine if the condition of your blood meets the trial's criteria. Mine did not. My platelet count was too low. I flunked. Luckily I get to retake this test. We canceled the scan till my platelets get better. They made an appointment for me to go in to the San Tan Mayo facility on Wednesday of next week for just blood work. If I pass this time I will then go to the Scottsdale Mayo clinic the next day for a scan. 

The coordinators seem anxious to get me in the trial. Everybody I've dealt with at Mayo has been great. The place seems like a first class operation and the people as well. From my nurse to the lab tech and the EKG tech to the doctors and admin folks, they have all been great. I am hopeful the drug and the results will be as good.

There is good news this week as well. Vicki is feeling better. We went out to our oldest daughter's salon today and got our hair cut. So if nothing else, we look sharp.

I am still having problems with my Part D medicare getting the anti-nausea drug I need while in the trial. This particular drug is the only thing I've used that worked during the last 3 years of my treatment. When we had private insurance it was no problem, now it is seemingly unattainable through medicare. I am very disappointed with medicare so far.

Perhaps I'll bring our RV to the house this weekend and get some work done on it. That would cheer me up tremendously. 

Have a great weekend,

RT

Sunday, June 4, 2017

Stuck on Stivarga

We had a very informative appointment with the folks at Mayo Clinic last Wednesday. I was first met by a doctor who went over my medical history with me. Then a Colon Cancer Specialist came in and talked to me about my cancer and what options I had for treatment. It seems that Stivarga (pills) is the last drug available to me for my stage 4 metastasized colon cancer. 

The good news is that they are running a clinical trial on the drug at Mayo. I will go to Mayo in the next few days for a series of tests. If I qualify after having a CT scan, EKG, and blood work done then they will randomize me to determine which of the 4 subdivisions I will be put in. Each of them receive the drug but with different doses and a different side effect dosage for the main side effect, which is a severe rash on the palms of your hands and the soles of your feet.

After that his nurse came in to give me contact info and tell me about the trial. Next the trial coordinator came in and explained how the trial worked and the different groups and subgroups. She also gave me a packet with all the info to take home and study. I told her then that I would be joining the trial if I qualified. A day later another person from Mayo called me to confirm my decision and set up an appointment for the tests I will need to have before joining the trial.

I am hopeful I get the group that starts with a low dose and the steroid cream for the rash. The other part of this group gets the same dose of Stivarga but no cream till the rash starts. In the second division you start with the maximum dosage of Stivarga and either get the cream to start with or have to wait till the rash appears. I would prefer to not be in this group. The online reviews from patients have been very bad for taking the maximum dosage.

The other good news is that the drug will be payed for by Bayer, the manufacturer. It's a good thing because the standard price is $9000 per month. This is less expensive that some other infusion drugs I've been given while on private insurance. Now though I am on Medicare and don't know how much of the cost they would cover. The part "D" drug portion has already been a disappointment and I've only had it for a month. 

The Bad news is that Vicki has been sick the last week and we don't really know what was the cause. She is better today and I am thankful for that. In addition to that bad news is the length of the study and the possibility that I will be unable to work on the RV due to side effects. We'll see.

That's it for now,

RT

Tuesday, May 30, 2017

Memorial Day 2017

I put our flag out this morning and took it down just before dark. That's what the flag regulations say you should do unless you have a way to light the flag at night. Not a lot of folks know this, but my father in law was an ex-marine and a stickler for rules, so I learned this years ago.

I thought some today about my experience during Viet Nam. I was lucky that I didn't lose any close friends. The two buddies with whom I joined the Marines both had very close calls, but made it back OK. The closest I came was when a 122 MM rocket went overhead and landed in the Quag (a name we used for a funky stream that went through our hut area) about a hundred feet down the stream. 

I did think that we should also remember the innocents killed in our wars as well. These poor folks did nothing wrong except be in the wrong place at the wrong time. All of the countries involved in wars past and present end up killing civilians as well as combatants. They deserve some thought and memories as well.

That's part of our problems in the middle east now. We don't get how much hatred we have created toward our country and the west in general. Don't get me wrong, there is no excuse for what the the terrorists do, it is truly inexcusable. We just need to be more aware that our policies and actions have consequences. We will never be able to kill all our enemies, so what should we do? I hope someone someday will find the answer. Until then we will continue to fill our memories with loved ones lost in conflict and need Memorial Day all the more.

Most of Americans today probably spent the Holiday in some form of recreation. I admit that I did barbecue a chicken breast on the patio. Maybe I am going too deep on the implications of our Memorial Day Holiday. It's the price you pay for being thoughtful about our society and country. Trouble is, the older and sicker I get the more I think about things like this. 

Sorry to get so dark. On a brighter note, I have a picture of some innocents that came by our house today and spent some time in our backyard. Here you go.


It's a Momma Mallard and 4 little ducklings. She bedded down for a while under one of our Orange trees. The next time we looked she and her ducklings were gone. We did our best to leave her alone while she visited and even researched animal rescue sites if she stayed the night and was there the next morning.

I always have a soft spot for the underdog or in this case the underduck.

Have a great rest of the week,

RT

Friday, May 19, 2017

Second Opinions and RV shock

I reached out to the Mayo Clinic this week and have an appointment set for the 31st  to get a second opinion. I was originally going to have an appointment with a general oncologist, but after they looked at my info a nurse coordinator called me and suggested I see a Colorectal Cancer specialist. So that's what I am going to do. 

There may or may not be something they can do to help me. I am hopeful they will offer me an alternative to chemo. We'll see.

In the meantime our work on the RV continues. I took it to an alignment shop on Tuesday of this last week and the mechanic found issues with front end components to the tune of over $2000. It bummed me out and made me feel like the guy who sold us the RV took us.

Nothing to be done but eat the expense and move on. Which we will do. I worked on the dining table top and the cabinet  next to my side of the bed in the bedroom yesterday. I was able to change the fittings that hold the dining table to the wall so that it will be permanent and more stable. This required routing out the underside of the table top to accept the fittings in reverse. When I mount this to the fittings on the wall I will be able to screw them together on the underside of the table. 

In addition I fixed the drawer guides on my bedside cabinet and changed the top.(The old top had a couple of large holes drilled through the top) It turned out to be more of a job than I thought but still well within my abilities. So job well done for me.

Next I will modify another cabinet to be Vicki's bedside cabinet. This will take more work than mine since there are no drawer guides and the cabinet must me cut down in depth to match mine. We will also be removing the rest of the wallpaper in the bedroom once the RV tech has moved some plumbing and electrical from the now useless washer/dryer hookups. 

The coming weeks will be interesting if nothing else. I still am working on the RV every other day at most, though this last week I worked two days in a row.

Vicki is pulling staples as we remove carpet, so that project is going along as well. If this all seems like a lot of work, you're right. I don't believe it is beyond our abilities though. It will just take us longer than it would have a few years ago.

That's the latest from here.

Have a great summer,

RT

Friday, May 12, 2017

Another Great Week without Chemo

As the title states I did not have any Chemo this week. Vicki and I worked on the RV on two different days this past week. We were only able to work about 4 hours each day. After each day we took the next day off and slept in till almost noon. We were both really pooped. 

In spite of our inability to work for extended periods or work consecutive days, we did make significant progress. The carpet is ripped up all the way to the kitchen and all the staples have been pulled with the exception of the bathroom. It took quite a bit of effort on my part to get the carpet up in the john. This included removing the toilet which is always fun. So the staples need to pulled in there.

I also did some small repairs on the drawers in the kitchen and started removing the wallpaper from the walls of the bedroom. In addition, I have made a good start on countersinking the screws in the sub floor. This has to be done so that I can level the floor prior to installing vinyl plank flooring.

Vicki has been working very hard on the RV and I greatly appreciate her doing so. I cannot do this alone. 

I will probably go over to the storage yard tomorrow and do a little work by myself, but not too much. It will take some time to get my strength and stamina back. I like fixing things and working with my hands, but right now I just don't have the energy.

I received a letter from the VA today as well. They have denied my appeal. My benefit stays at the lowest amount. At least it's something. I will not waste any more time on the VA. I have never had much use for them and I certainly don't want to spend any more time thinking about Agent Orange or any of that crap.

The good news is that I feel a little better each day. I plan on calling the Mayo Clinic next week to see about getting a second opinion. It would be great if we could go after my tumors without chemo. There are intervention options, but they depend on the status of my cancer. I remain hopeful.

Wish me luck,

RT

Saturday, May 6, 2017

Chemo? No thanks!

As you may have guessed from the title, I did not have chemo this week, nor will I have it for the next 3 weeks. My Oncologist thinks it possible that the two small new tumors that showed up in my last CT scan could be inflammatory and not cancer. Either way they are very small, 4 to 5 mm. 

So he agreed with me to stop chemo for a while. I told him I am just too tired and sick to function and I need to function. 

At the end of the 3 weeks he wants me to start on a pill call Stivarga. The reviews I have read on it are not good. Many complain of heavy side effects with no progress on suppressing or killing the cancer. A couple however did report good results. I will continue research for the next 3 weeks and then make my decision.

I do not want any Chemo if I can help it, not infusion or pill. The poisons in the drugs are waring me out. At my age I need something that builds me up not tears me down. After a while I begin to feel like a guinea pig. At this point I believe I've been given about every drug recommended for colon cancer. 

In the meantime I will continue working on the RV. I have an RV tech coming to look at it on the 15th and I'm taking it to Spectrac for alignment on the 16th. We had to cancel our reservation at Buckskin Park for the 15th and 16th. I just couldn't get all the work I needed done in time.

I remain hopeful we will finish the renovations on our rolling home and hit the road sometime this summer.

Here's to you having a great summer.

RT

Monday, May 1, 2017

After Effects

Vicki and I are struggling today. We worked two days in the RV this weekend. Our son that helped last weekend had his 13th Wedding Anniversary this Saturday, so we did what we could on our own. 

Still, some progress was made and some questions answered (it's surprising all the things you have to know about your RV) and some new ones asked. I'm taking the unit to get it's two front tires changed and balanced tomorrow. Then later in the week or maybe next week to another place to get it aligned. 

In the meantime we are officially on medicare as of today. I learned that Cancer Centers of America doesn't take medicare patients when I called to check today. 
I am looking at what options are available to me if I decide to change providers, if indeed I can change.

There are other oncology and cancer providers in Phoenix. I will talk to as many as I can find. 

We will have a talk with my oncologist this Friday about treatment without Chemo. Maybe even a clinical trial. Who knows.

This will be another busy week I suppose.

I hope yours is more  calm.

RT


Sunday, April 23, 2017

Arriving at Geezerville's Gates

I turned 68 today and I feel pretty damned good for a guy who had chemo on Friday. I know it's more about my mental attitude than my physical condition. 

It comes from working with my youngest son yesterday on our RV. I worked with my Dad in a cabinet shop in rural Alabama when I got out of the Marines in 1971. Working with Damien yesterday brought back some of those memories.

The cabinet shop was on the second floor of an Old Barn in Verbena, Alabama. The train tracks ran behind it about 50 feet away. In the winter (it gets cold in Alabama in the winter) We would sit by an old wood stove taking a coffee break and watch the freight cars go by and marvel at all the different states and locations they came from.

I spent a lot of time yesterday sitting on the RVs couch and watching Damien work. My stamina is pretty low, I can work in spurts, but not continually for any amount of time. He worked tirelessly and smartly as well. It was a real pleasure to work with him. I am looking forward to the next time we work on the RV together.

Vicki made me Taquitos this morning for Breakfast. Right now I'm watching the Bruins and the Senators playing game six in their playoff series. The Senators just scored another goal and lead 2 to 1. If the Bruins lose they are out of the playoffs.

It's a great day to be alive regardless of your age and ailments. 

Hope your day is as good,

RT

Friday, April 21, 2017

God is laughing Again

The old joke is "How do you make God Laugh?" "Tell him your plans."

The scan came back with 2 extra small tumors in my lungs, so I had chemo today. The oncologist is on vacation and his assistant gave us the news. We were disappointed to hear this. It made Vicki cry when a lady we met in the chemo room asked after me. Both the ladies were crying and hugging and I tried not to cry because seeing Vicki cry breaks my heart.

I think she took it harder than I did. I spent the 4 hours we were there figuring out how to get the remodeling on our RV done while in Chemo. I have already reached out to my brother in law for help. Now I will need another helper and I will call my youngest son to come help if he's not working on Saturday. 

The next step is removing the washer/dryer combo unit from the bedroom. After that we have painting, cabinetry to move and reinstall, a full 60" X80" platform to build, and new flooring. And that is just in the bedroom. We will also be replacing the 22 year old carpet with Vinyl Plank Wood Look flooring in all but the cockpit area. But before we do any of that we will need to finish removing the old carpet from the rest of the coach. ( I took the carpet out of the bedroom along with the storage cabinets that went under the original twin bed setup.)

After all the carpet is out we will still need some time to remove all the staples from the half inch plywood underlayment in the RV. I was happy and reassured to find real wood and not pressboard or some other crappy substitute.

Today we are supposed to get a big order from Camping World with more projects, including replacing the not functional vent fan in the bedroom with a
new fantastic fan with thermostatic control and the ability to reverse the fan for blowing out or in. Walmart has my order for door minders ready to pickup whenever I get the energy this weekend.(These are little plastic gizmos that hold up the basement storage doors.) It doesn't sound like much, but it requires drilling out the heads of pop rivets used to attach the holdup rods that are currently used to prop open the doors. These clips will keep the doors all the way open for loading and unloading the bins.

Yesterday I worked on the oak cup holder that the previous owner had mounted on the doghouse. I routed out the back to make it fit like it should. I hadn't used my router in over a year. It was nice to be doing a project instead of laying around feeling tired and funky. In addition I  bought a hole saw to put holes in the bottom to allow soda cans and water bottles to stay in the holder.  The way it was made was just for coffee cups.(Wide with room for the handle, but not deep enough to hold other drinks)

I am considering going out to garage and working on it. The chemo has other ideas. We'll see how I feel later this afternoon. I will probably be too busy playing with the new stuff from Camping World.

On a much lighter note, I turn 68 on Sunday. Officially entering Geezerville.

Vicki has just 5 days to work before her retirement. That's really great. We are looking forward to her being home with me. Plus we will be able to travel and  camp during the week at some point. I just need to get the RV finished and get out of this damned Chemo.

I feel challenged by this turn of events, but not overly bummed out. I will continue to carry on.

Wish me luck,

Rich


Tuesday, April 18, 2017

We finally found a Motorhome

Yep, we sure did. It's not all that pretty, not that new and thankfully not that big. It's a 31 foot Class C Fleetwood Tioga. This particular unit is on an HD Chevy Chassis with a 454 Truck V8 and an auto tranny.

The Winnebago we looked at before the Tioga was 35 feet long and a class A. It unfortunately had issues we did not want to deal with. 

So, we will be remodeling the bedroom on our coach in the next week or so. New flooring and removing the washer/dryer combo that the original owner from Florida had installed. Our seller (second owner) had the unit for 12 years and never used it and neither will we. In addition our seller changed the layout in the Bedroom from single beds to a queen by putting the two mattresses together. 

We (by that I mean me and brother in law) will be removing cabinetry and adding as well, plus building a platform for a standard queen mattress that is 80 inches long. It turns out that an RV queen is only 74 inches long which is a tad tight for me at 73" tall. 

Also this thing has 2 TVs in it. I tried to talk Vicki out of the one in the bedroom, but she nixed the idea. So when we change and add cabinets I've got to find another spot for the TV. I hope we never ever use it when camping. 

Anyway when I get the RV cleaned up a bit more I'll put a picture of the exterior and interior.

In the meantime I've made reservations for our shake down cruise in May to camp with full hook-ups in Buckskin State Park on the Colorado River outside of Parker. I might even get in some fishing if I can get my cheap self to spring for the 37 bucks the state wants for a fishing license.

Things went smoothly today getting the sale finalized and getting tags and insurance. I am hopeful the remodel and refit will progress as well as today.

My next Oncology appointment on the 21st will be to review my Cat Scan. I am very hopeful we will be able to stop chemo and move on to intervention.

I am looking forward to getting the RV ready and hitting the road.

Hope your days are going well,

RT




Friday, April 14, 2017

RVs, Medicare Supplements and Retirement

We looked at an RV last Sunday and thought we had a deal. It turned out the unit had a check engine light which would keep it from passing emissions or getting registered and tagged. The lady selling it is very nice and perhaps it will get fixed and we will get it.

In the meantime we looked at 2 more RVs on Wednesday after my scan that morning. It wore me out doing the roof and outside inspections. In the end both units had issues we did not want to deal with. So... We will look at one out in Mesa on Saturday.

This week saw us finalize the transition from private Insurance to Medicare Parts A & B plus supplements D & F. After all this it looks like Insurance will take about 20% of our retirement income. We will definitely be on a tight budget.

This makes my retirement dream of traveling for 6 months of the year in an RV even more of a challenge. I am hopeful we will be both creative and frugal in obtaining our traveling home. We will see.

Wish us Luck and the best to you,

RT

Saturday, April 8, 2017

Very Good News

OK, so let me say this first. I have been thinking and planning with the idea that   it was possible I just had a couple of years left to live. The percentages posted on The  American Cancer page for my disease seen here https://www.cancer.org/cancer/colon-rectal-cancer/detection-diagnosis-staging/survival-rates.html give me a whopping 12% chance of survival after 5 years. I fall under the metastasized group farther down the page.

Vicki addressed this belief with my Oncologist today. He stated first that the studies used for that statistic were too old to be valid because the drugs and therapies used now were far superior to the limited drugs used 10 years ago.

Secondly he said my tumors, their placement, and the slow progression of the disease indicated a much more optimistic outlook. He stated that since my disease had not migrated (metastasized) to my liver, (the more common action of an aggressive form), that my disease was more controllable.

Third and last, he stated that if the results of my scan next week show no more tumors and the existing 2-5 small masses haven't grown, then we could consult an Interventionist.The procedure would burn the tumors in my lungs with fine wires that use radio frequency to produce targeted heat. If successful, Chemo would stop and a maintenance regimen with visits a month or more apart would be the new norm. Oh and I have to stop Chemo at least one month before this procedure to reduce bleeding. I am all for that.

This is fantastic news. I feel much better about our chances to do some serious RV camping. 

Speaking of which, we looked at a couple of more RVs this week. Both of these units where at dealers on Main Street in Mesa and Apache Junction. The used unit we looked at Power RV was a joke. They don't clean the units, go through them and fix the systems, or even start the damn thing up so you can check engine and trans. It was laughable and to me very unprofessional.The salesman who had been alerted we were coming(the original Sales guy I spoke with was out sick or something that day) told us they just take them down the road to their service site and fix everything. This is after you buy the unit. Wow! I asked how long they warranty an RV that has gone through their shop and he stated there was NO Warranty. They would show you every thing working the day you picked it up. When you drove if off the lot that's it. One wonders if they are familiar with a local plumbing commercial featuring a guy named Melvin.

We also looked at a new Jayco RV at another dealer. This was just 24 feet long, but had 2 slid outs. We do not want to buy an RV with slideouts. This was a medium sized dealer whose name I don't recall. We looked at just the one RV and left. Nothing there for us.

We ended up at Camping World where they wanted to show me the only used RV they had on the lot under $20,000. This was a Majestic RV from their or some other Dealer's  Rental Inventory with a 150,000 miles on it. No thanks.

We are scheduled to go see a 2 owner RV out in Peoria on Sunday if I can hack it. I will do my best. Right now I am eating apple slices to help with my Nausea. (We learned this trick from when a waiter suggested it to Vicki on one of our cruises and it really helped with her Sea Sickness.) I cannot take anymore of my Nausea pills for a few more hours.

So...More hopeful about living a little longer? Sure. Still optimistic we will find an RV that will serve us well? OK. Looking forward to this possibly being my last Chemo treatment? You bet your ass I am.

Hang in, 

and PS: Ant, sorry I didn't see your comment till today. Jack as always I publish your comments as soon as I see them.

RT



Sunday, April 2, 2017

What do you want first, the good news or the bad news?

The good news is that I had enough energy this weekend to drive down to Tucson on Saturday to look at an RV. It was really nice to be out on the road again with Vicki. The drive down wasn't too bad. We averaged close to 75 the whole way. When we got into Tucson the exit we needed was closed for construction and the detour to get to our destination was a bit tedious.

We did eventually find the storage yard where the RV was stored. This brings me to the bad news. The RV had several issues not to mention a roof patch over the rear bedroom and serious delamination of the sidewall. Once moisture gets into these RV walls and ceilings it's a big deal and a major pain in the ass to fix.

The first thing I did was climb the ladder to the roof of the unit (the ladder itself was flimsy with just one of the two lower fixtures being actually attached to the rear wall). I was pretty sure at this point we weren't going to buy this one. Once inside the cab I found that the ABS light stayed on, meaning there was some issue with the brakes. The interior was pretty whipped as well. The pictures posted on the Internet must have been taken some time before.

So.. We thanked the guy for his time and headed back to Phoenix. On the way back we were delayed about 45 minutes by a multiple fender bender just 10 miles south of our exit off the I-10.

Anyway, we were happy to get out together and travel. We even used some of the traffic delay time to do some carpool Karaoke. I noticed some of the folks in the next lane laughing at us, but it did help kill the time.

We are just chilling out today. Vicki put a roast in the crockpot and made brownies as well. 

Hope your weekend went as well,

Hang in,

RT

Friday, March 24, 2017

No Good Deed Goes Unpunished?

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


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






    




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
 








 

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  

 

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

 

Sunday, February 19, 2017

More Chemo

The results of my blood test were encouraging. The number for my cancer markers was down while my blood stayed in the good range for white cells and such. 

That means more chemo till we think it's not doing any good. The marker number is still high but down by half from where we started. 

I'm continuing on my homeopathic regimen as well. I remain hopeful that we can kill this cancer.

I had waffles with syrup and butter, bacon and a fried egg for brunch today, thanks to Vicki, so I am feeling pretty good. Food can be a real issue during chemo. So it makes me feel very happy indeed when I get a full meal down.

The rain has been nice today. 

Hang in there,

RT 

Wednesday, February 15, 2017

Hump Day Notes

The middle of the week is not my usual blogging time, but here goes anyway. I actually had the energy to shower and shave today. Good thing too, because I go for blood work this afternoon in advance of chemo again on Friday.

Things have been a little rough this past week, between the side effects and my acting like a jerk to Vicki, I have not been on my best behavior. I spent a miserable day on Saturday trying to help Vicki with our taxes and her application for Social Security.

We were able to get the application for Social Security done and as far as we could go on our taxes till I get another form from my short term insurance company.

The problem was that I was a total grouch the entire day. I couldn't take my homeopathic regimen till we finished and I could go out to get her Valentine's Day card. Needless to say I was a Jackass and she let me know it.

The next day I apologized profusely and promised to quit criticizing her. I even managed to say it in a funny way. (Which will not be memorialized here) I meant it never the less and am dedicated to mending my ways.

We'll see how I do.

Hang in there,

RT

Saturday, February 4, 2017

More Chemo

Yesterday turned out to be just another chemo day for the most part. The doctor reduced my dose by about 10% and increased my nausea meds as well as giving me a patch to wear the first week after chemo. This should combat the vomiting issue I had with the last treatment. I was able to sleep this time as well. I am not sure whether it's due to the reduced chemo or the homeopathic regimen I am taking again. 

Either way it's great news for me. I got up at 6:00 AM this morning and am contemplating loading this years turbo tax. Maybe, maybe not.

Vicki is doing better. She's still sleeping and I'm going to let her sleep as long as she needs. I'll just peek in and make sure she's OK from time to time.

I have been entertaining myself by watching videos about RVing. If and when I get out of treatment we would like to get a small or smallish motor home and travel in the summers.
At this point it's just a pleasant fantasy. We'll see how it really works out.

OK, that's it for me. Hope your weekend goes well and your pick for the Superbowl wins.

Hang in there,

RT