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!
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!
By Tom Hintz
Posted – 12-11-2016
Since I told my regular doctor that I was having a little trouble swallowing occasionally I have had a colonoscopy, three endoscope procedures, the last with ultrasound and a CAT scan. The ultrasound endoscope is what determined my cancer to be at stage 3. I suspect this is more advanced than my oncologist suspected when he told me we were looking at curing my cancer, not just slowing it.
Through all of these tests and meetings with doctors I realized that nobody cared about my swallowing anymore. It appears that the tumor grabbed everyone’s attention. Prior to the last endoscope (and ultrasound) the oncologist was saying he hoped that we would be following a plan to cure me of the cancer. I suspect the stage 3 finding makes a cure more than a little optimistic if not outright wrong.
Since I have little to do outside of think about all this, I realized that though all of these tests nobody has mentioned the swallowing thing again. Surprisingly nobody seems overly concerned with the aortic aneurism either because it only measures about 4cm. Everybody’s attention is on the cancer so that must be the most likely to take me out. Next the doctors want to do something called a PET scan that uses slightly radioactive material to highlight the cancer cells. This test is sounding like a way to scan a wider portion of my body to see if cancer can be identified in more parts of me. It’s hard to imagine results of the PET scan being good especially if we remember that every test so far has pushed the diagnosis toward the “oh crap” side of the reality scale.
An odd part of all these tests is that the apparent skill of the people putting the IV fittings in my arms has gotten progressively worse. The last endoscope the IV fitting was put in the back of my hand in a small vein. When they started pumping the medicine into the IV that makes you go to sleep it felt like my had was on fire. The doctor saw me react to that and said, “yeah, that’s a small vein, it’s going to burn a little”. No kidding?
So far, I am the guy sitting quietly in the meetings and being told what they are going to do to me next. I have been assuming that the progression of tests is just how they diagnose the cancer and the treatment plan. Perhaps that is why nobody has asked me what I think of all this. They are about to find out though.
I think it is time for me to start pushing some questions to see where all this is going and what the proposed treatment plan is expected to produce. The doctors seem pretty sure that I am going to need chemo/radiation as well as surgery. None of that sounds cheap or fun but more importantly is what the outcome is thought to be. I need to consider what kind of life I can expect after all this and what it is going to cost my family to get there. We have good insurance but I expect the copay part of this deal is going to get way more expensive.
I want to know the doctor’s best prediction on what my life will be like after the chemo, radiation and surgery. I want to compare that quality of life with what can be expected if I do nothing but manage the pain as the cancer runs its natural course. There is also the distinct possibility that all the proposed chemo, radiation and surgery will only post pone the cancer’s end game for some amount of time until my life gets to where it would have been without any of the treatments.
I know the doctors must do a sequence of testing to reach a best guess on where this is all going but that testing seems to be nearing its logical end. I just want to know how much input I have in where we go and what we do about all this.
So far, nobody has asked me.
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.