As I traveled across many states in our beautiful nation on my ride of a lifetime there were plenty of times when my GPS would take me into some very remote places and often times it was unclear as to where I just might end up. Many times I would stop at a fork in the road or at an intersection to determine just where I was at and where each of the roads ahead would lead me. I had to make the decision which way to go to get me where I needed to be. Many times I would use my GPS, in conjunction with google maps on the phone as well as a printed road map to come up with an answer. This is the same story that goes on for a rare cancer patient who is making life decisions. There are many “forks” in the road of life and for those of us with a dreaded incurable disease, we will need to make some hard choices at some point using whatever information we can. Some of these are pretty serious decisions, others not so dramatic but none the less all are important to get you where you think you need to be. Choosing the right highway in life can be a difficult one to navigate all while trying to remain positive seems to be the tough part.
These last couple of months since returning from the ride I have been very low key. Not a lot of writing. Not a lot of social media. Not a lot of anything really except trying to decide where my next path may lead me. I also spent over 2 weeks in August sick with a bad summer cold which has not helped much with getting things done. When I last “blogged” in July I was in the midst of fighting with trying to get new appointments at Mayo Clinic, after their business office told me they would not do so unless I paid my back balance. Since that time they have scheduled appointments, then taken them away again and then made new ones but only after I complained about the entire fiasco. I have made some payments and set up an additional payment plan to get the issues resolved concerning the bill but the entire process has left me pretty disenchanted about the entire medical system and the pitfalls of it all. On one hand I just want to forget the whole damn thing and live out what life I have and tell the medical industry to cram it. On the other hand I still want to know what is going on inside my body so I can be somewhat prepared for the next chapter, which in fact could mean my impending demise or it could mean I have a bit more time to prepare for the inevitable. These are just a couple of the things I am currently tossing around in my mind.
I have lived with Adenoid Cystic Carcinoma for 12 plus years now. I’ve had 4 major surgeries, 40 radiation treatments, countless numbers of CT scans, PET scans, MRI’s and doctors appointments and in my personal opinion they are no closer to finding a treatment plan for me than when I started the journey back in 2007. I am more disgruntled about the “cancer industry” today than I ever have been. Yes, I called it an industry and I make no apologies for that. The industry of cancer has become larger than the disease and I believe when that happens there will be NO cure for cancer. I keep asking myself the question: If there was a cure today, how many people would be unemployed tomorrow? Hundreds of thousands of people now depend on the cancer industry and it’s patients to put food on their own table. I know it sounds a bit harsh but I am just looking at it very pragmatically. Have you ever wondered why when the industry builds a new cancer center they announce it with a headline that says “New 300 Million Dollar Cancer Center to be Built”. They throw those huge figures out to prepare you for the revenue trolling that will follow and to keep the industry of cancer going and keep its patients flowing through the doors. If it was about the disease and the patients the dollar figure would not and should not matter. In some ways I guess you might say I have lost hope but in fact I have not lost hope, I just choose to look at hope from a different highway.
Next week I have the appointments that were scheduled at Mayo Clinic. I am still unsure whether I will keep those appointments. I feel ok despite getting really tired lately. The tumor under my left arm has definitely gotten larger since I last went in March and is causing some nerve issues in my arm. It is painful at times but is generally tolerable. It is a very visible tumor and can be felt easily (about the size of an extra large egg). The tumors in my lungs and liver are a different story. I cannot see them obviously so I don’t have an idea of there growth. I am not experiencing to much discomfort but at times I know from the sharp pains in the right side of my chest something is probably not right. Yes it might be nice to know but what will they do? So many times I leave Rochester for the long drive back home after rounds of scans and there is no treatment plan. Just more “wait and see”. I guess after this many years I’m getting tired of paying for “wait and see”. My current insurance plan runs from July to June so if I keep these appointments it will mean adding several thousand dollars to the current bill via the new deductible. I have been working however to jump off my health insurance plan and go ahead and sign up for Plan B Medicare (I qualify at age 60 since I am technically disabled). Its pretty much the same cost although I need to then find a Medicare supplement plan for the 20% that Plan B does not cover. When I put a pencil to it I might be able to save a couple grand a year. So one of the things I am considering is waiting for the scans until the Medicare kicks in, however I hate the thought of being on a Government program. As bad as I think medical system is in the country, putting myself in the hands of the Federal Government probably is not a good answer either. Scares me to death (no pun intended) just to think about it. In my mind there is probably one thing worse than the medical industry and that’s the Federal Government. Sorry folks, I’m just not a fan.
So maybe I should ask the few of you that will read the blog. What would you do? Ride On and live with it or sign up for more of the same? For me it’s a difficult decision so I will certainly pray for the right answer and in God’s own way I know He will answer me. If there was ever a time for my faith to be strong, it is NOW and strong shall I be.