The Diagnosis is Not the End!!
Five years ago I was diagnosed with Early Onset Alzheimer's. When I was honest about having the disease on my sites all but one of the supporting companies ran for the hills taking nearly all of my income with them.
There is no cure for Alzheime's but my neurologist stresses working my brain and is now fully supportive of my flying RC airplanes because of the intense concentration required and how that "exercises" my brain to delay the progression of the disease. To date she feels this is doing as much or more than anything else we can come up with.
My goal with this effort is two fold. One is to continue pressing my brain with the intensive concentration required by RC flying. But I also want to show others with this and other similar diseases that the diagnosis is not the end! I can best do this through my sites flyingrc.net and fightingmyalz.com where I can demonstrate that we can work against these diseases ourselves without compromising medical therapy's.
I am not able to work in a traditional job anymore, in part because I drive very little. However, I have the computer horsepower to build and maintain my sites at home. If I can generate enough money through this campaign to make all this possible I firmly believe that we can help other people and make their life and that of their caregivers a little better.
Please know that I deeply appreciate whatever donation you can make, however often you can. I know we all have our limits but a little from a lot of people is just as good a bunch from one person in the overall scheme of things.
Thank you for considering my efforts!
The next step is a big one
Text by Tom Hintz
Posted – 3-13-2017
A few weeks ago, I finished the course of radiation and chemotherapy. I felt awful for a couple weeks after that ended but got better. Now I feel better than I have in a long time but when I start taking that for granted and try to go flying for a day I find out just how quickly I run out of energy. I also cannot withstand cold nearly as well as I have for the last 60-some years.
I am better but by no means am I right.
In about a week we meet with the surgeon that is going to take the tumor out along with a bunch of my stomach, esophagus, gall bladder (while he is in the area) and some lymph nodes. There may be other stuff that comes out that can only be determined when he gets in and can see things first hand. What is certain is that this is no simple operation no matter how “routine” I try to make it in my head.
Now, just when I am getting back to being able to go flying or doing other things it becomes clear that this is approximately half way to being done with all this cancer-related treatment. One of the brighter sides to all this is the 60 pounds of weight that I lost in the last 6 months or so. My blood pressure went down enough that it concerned some of the people who check it every time I show up for any kind of treatment. My regular doctor along with one of my cancer physicians decided to stop my blood pressure medication altogether and it stayed well within the “good” range.
But now that I can eat normally again my appetite is swinging too far to the “fill me up” side and the weight has slowly begun to come back. Just a few pounds now and while most people around me like that trend I hate it and must work to confine my eating to smart stuff. I also need to get out to the flying field more to stay active. I have returned to the elliptical machine but have to work to increase my stamina for that effort to be productive.
With me feeling better I have been able to get more work done for FlyingRC.net which is important to me. I still fight the declining income brought on by the slowing pace of new content. That in turn limits the cash on hand with which to do the projects that generate the content and videos. It’s the classic vicious circle. I need more money to do the projects that create the content needed to make those dollars.
And so, the struggle goes.
I expect that the next few weeks are going to be eventful. Between trying to finish the content/projects currently on the bench and finding out when I am to present myself at the hospital to get a big hole knocked in me it is unlikely that this period will be boring. Frightening maybe but certainly not boring. So, stay tuned – it could get bumpy for a while!
I’m getting too small – according to some
By Tom Hintz
Last week I finished the five-week regime of once per week chemotherapy with every (weekday) day radiation treatments. When I first started making notes for this story I was sort of flying high in that I was not feeling the drastic effects of the treatments so many warned me of and was even being praised by the caregivers for my resistance to them.
Then the last week came around I started feeling worse as everyone had told me I would as the side effects are cumulative. I finished the chemo last week Tuesday and had to finish out the week and Monday of the following week for the final radiation treatments. All that tough guy bravado was fading fast as that cumulative thing jumped up and kicked my butt bigtime. I didn’t know that Superman-tough could be a temporary thing.
Now a good week beyond the last treatment the side effects are still building. It is hard to eat anything as my throat is “hot” and swallowing hurts in ways I would have never expected. My voice goes from fairly normal to a distant gravel sounding whimper. Doing my work for the site is going to take some recovery.
What surprised me most was how weak I had become. While sitting around “relaxing and resting” as everyone was advising I felt OK. But I went to the flying field one day and had the nerve to walk around a little I felt like my legs were made from lead. I tried playing my guitar one day and several cords into the first song I could just barely hang onto the pick. Again, I was warned that fatigue was likely but I had no idea just how tired or weak I could feel.
The good news is that I finally admitted defeat and we went in and asked for help.
The folks doing these treatments have been great and once again stepped up with some medications that seem effective in combating the side effects. I still have weeks to go before they expect all this to calm down but hopefully that fight will get a bit easier as we get into the later weeks. I also have some upcoming appointments with the oncologist and a checkup by the radiation folks, all this coming week so perhaps there is something else we need to do.
One topic that keeps coming up is that I need to gain weight or at least stop losing so much. Now I am in no danger of fading away to nothing so am not worried about another five pounds disappearing but everyone else is. I have dietary supplements I am supposed to mix with anything I eat (their idea, not mine) and I have been trying to get one or two of those in me per day but they want like four per day. I am trying to comply as I can because all this is a thinly veiled threat to put a feeding tube in me. There is going to be a fight over that one. I think I will be fine once my throat heals a bit and I can eat things in any quantity. They want all this to happen yesterday.
At some point now they are going to do more scans to see how my cancer is doing. Did the radiation in fact stop it or shrink it? Can they see any more cancer where we didn’t see it before? If so I could have a bigger problem….. These scans are probably going to determine the extent of my surgery but I have already been warned that once the surgeon gets inside me the plan can change considerably depending on what he sees and what the tissue along the margins of what he removes show.
So now I have to recover enough for the surgeon to feel I am strong enough to withstand major surgery. Then I have to recover from that. All this puts me out at least a few months before I can expect to feel even a little bit of normal. Then there is always the possibility that I will need another round of chemo and radiation after the surgery though that is not in the plan right now. Again, it depends on what they find inside me.
Stay tuned. This is not going to happen quickly but I guess I should be happy that they still think it is worth cutting on me. I keep telling myself that is good news.
Another twist in my cancer treatment
By Tom Hintz
Posted – 1-12-2017
Nearly all of my conversations with the doctors coordinating the assault on my cancer are deadly serious. However, within that dark context I occasionally see humorous moments. Most recent was my weekly meeting with the doctor overseeing the radiation attack on my tumor. While most of his questions and comments relate to the radiation treatments and their potential side effects he had another concern instigated by scans they take of my “cancer area” during the radiation treatments.
I had been told to not eat or drink for at least 3 hours before my radiation treatments because the stomach is one of the more sensitive organs when it comes to the radiation with which the machines blast my tumor and stomach. The doctor said that the scans are showing good things in terms of alignment of the radiation on my tumor. Because I am abiding by the no-food period before the treatments, there is no food in my stomach to compromise the scans or the treatment. However, there is a small problem he noticed in recent scans – I have gas. That “bubble” is apparently distorting my stomach slightly in the scans.
Many years ago, Playboy ran a cartoon with a single line caption that has stuck with me ever since, “Never trust a man who laughs after he farts”. Funny certainly but taken at face value makes me ultimately untrustworthy. Considering the disease we are dealing with the idea that having gas has become a topic of concern seemed downright funny to me.
Adding another level of giggles to this meeting with the doctor is the suggested medication - over the counter gas pills. I nearly cracked up right then in the meeting. I must be careful about that kind of outburst amongst this group of professionals that are quite literally saving my life.
So, I add gas pills to the double-fist-full of meds I am downing each day and will try to keep my giggling to myself. The last few years have been full of worry about first Alzheimer's taking me out then the current battle against a faster-acting cancer. If this gas rises to a level that could also threaten my life I just might laugh myself to death. Such a death due to something I have so long considered uniquely funny would indeed be poetic. Dust to dust, gas to gas. Tom might finally toot the big one.
And I can’t return it
Text by Tom Hintz
Every Christmas I can expect thoughtful presents from my wife and daughter and a fresh supply of Green Bay Packer clothing from my in-laws back in Wisconsin. The Packer gear has become increasingly important as my on-line persona has become defined by the ever-present Packer clothing and my voice narrating my 500 plus videos. At last year’s Joe Nall held at Triple Tree Aerodrome I was repeatedly recognized by people at the event and even the hotel breakfast lines as the “video guy” from FlyingRC.net. The voice and Packer gear are turning out to be my best marketing tools.
This year however I received probably the most memorable surprise ever. A string of doctors that were chasing down a reason for my having a little trouble swallowing discovered a tumor in my stomach right where it meets the esophagus. The diagnosis is a stage 3 cancer and we are about to embark on an intensive five-week long regimen of chemo and radiation therapy that everyone promises I will not enjoy. That will be followed sometime in spring of 2017 by surgery to remove most of my stomach and esophagus and connecting the remaining ends of those organs. It doesn’t sound like any of that will be fun either.
All this is important to the viewers of FlyingRC.net because the effects of the chemo/radiation on my energy and stamina will slow my work on the sites. I will continue to do the sites through all this but there will probably be more time between the posting of new content. Also, any of you who have been through a serious medical issue knows that there is a financial drain associated with it that will also slow my ability to produce content.
I appreciate the loyalty of the folks who visit FlyingRC.net and NewWoodworker.com and just wanted you to know that I am down but not out. As energy and cash allow there will be new content appearing on my sites. I am hopeful that a year down the road will find me close to being my old self again and anxious to return to my non-stop work weeks and the enjoyment doing that work gives me.
Stay tuned! The “video guy” is not giving up!
My mother died of this horrible disease about ten years ago and it runs in the family. In my research I have found plenty of data about battling this internally besides working the brain. In short eliminating all chemicals in food i,e, use organic only ... grass fed beef, milk, cheese etc., free range chickens and pork and eggs, real organic olive oil and coconut oil and lots of greens and fruits all organic! I hope this can help you as I don't have cash to donate so good luck and I enjoy your site very much thank you roger
You are blessed more than most. I have occasionally tuned in over the years and seen. I couldn't afford a fraction of what you have in your shop or fly. Don't get depressed. I have known this illness as well as my own a very long time, and yes most do run for the hills when they find out. $25g's is chicken feed my friend. As typical memory ward care is $6g's a month. I had to give up flying long ago as my friends were not. I was a Vietnam era vet with a problem. Cherish what you have, a good attitude, as it is gratitude. I do.