Fightingmyalz.com is a
Nobody Asked Me
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 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.