October 2013 – My wife Carol had just broken her leg. November- She breaks her leg again. While she was getting her leg repaired, they drew blood to find out why she was falling. She was anemic, which means she was losing blood but we didn’t know where. They scheduled an Upper GI and a Lower GI. It was during the lower GI that they found the cancer. The doctor came up and told me once he was free from the procedure.
My heart dropped, my mind raced, and instantly I thought of many reasons why there was no way this could be true. From there proceeded many tests, emergency room visits, and the aid of a wonderful Oncology Advocate (her background is pathology) and then the diagnosis of Colorectal Cancer. We were told this would be almost routine and there was nothing to worry about.
February 2014 – Carol catches an infection on her leg. She requires a third surgery on her leg. This time they put an external fixator on her leg. That goes good for a bit.
April 2014 – Carol and I are faced with the biggest decision of our married lives outside of us getting married. We opt to have her leg taken off. She recovers fine from this procedure. Now it is finally time to look for a surgeon. We don’t take any chances and go with the best at University of Alabama at Birmingham (UAB). During one of our normal routine visits to get blood work done, basically prep work for the surgery, we are told to go to the Emergency room in the UAB facility. Her potassium level is way too high and she gets admitted. 3 days later, we go home.
She finally gets to surgery but not the surgery we are looking for. She is told that she will have a colonoscopy. She has that done laperscopically. We also find out that she is and has been constipated. 4 days out of surgery, she still has not gone. She is called into another surgery, this to fix the first and get the stool moving. This surgery finally works. We get home and find out that Carol is in much less pain than before the surgery. For that, she is grateful.
So what becomes of all this if it is not a teaching lesson. Here is what I found out about the whole situation.
Challenges – dealing with shock, while trying to lift the spirits of my 49 year old wife, while trying to stay positive myself, while trying to deal with insurances, hospitals, specialists, family, friends, and above all, making the right decisions. I guess I would call this information overload, but every bit of it was necessary–and all in a very compressed time frame.
Lessons – An oncology advocate is worth more than gold. We started at a local oncologist who gave the first round of treatment. When it came down to surgery, the recommendation given to us was not the best. We then tried to go to the “Cancer Treatment Center of America”. One sitting in Atlanta denied Carol’s ability to use their facilities. I am sure they are wonderful facilities but they are not in the business of helping people as they say they are. They help who they want to help. One phone call to the oncology advocate and University of Alabama at Birmingham was suggested. We had our local oncologist make the referral. It has been the best decision of all. LL- Not all doctors or facilities are the same, even though they might have “Cancer Treatment” in their name.
Her guidance was incredibly invaluable. Without her, I don’t know that a proper facility would have been chosen. I was on the same wave length, however I had no power to make changes.
Unanswered questions – Would more testing done earlier have made a material difference? If testing were done earlier, would my wife have been more prone to be tested more often?
Did this cancer “explode overnight” (per se) or did it develop slowly and therefore might have been caught in earlier more treatable stages? (And yes, I beat myself every…single…day over this regardless of all the kind words people have said to me.)
How can we make testing earlier and more simple and so thorough that it becomes as commonly administered as the old CHEM-7 panel?
I had just completed my testing and wasn’t totally out of the woods as I had 4 polyps that were removed. I don’t think they were any thing to worry about since I am still here and not testing. I do have to go back in a year or so to do it again. The thing is just kind of weird in that women are not even expected to start testing until 50 as well. With Carol being adopted, there is no way to tell if there was a history. What do you do and how do we know?