Let me just say, for a guy who is used to having a plan and used to getting things done, it is difficult to wait and watch.
Today was a tough day for me mentally. I heard back from 3 specialists in the field of pseudomyxoma peritonei. They all reviewed my records and all responded with their suggestions. I will need to have a CT scan done with contrast in the next few weeks and a tumor marker test done, both for baseline readings purposes and to look for signs of disease. Then they suggested CT scans every 6 months for 3-5 years to check for mucin buildup in my abdomen. One doctor actually requested to see me in person for a consultation as well as sending him my pathology slides from the first two surgeries.
None of the specialists said that further surgery was warranted at this time due to the fact that I just had two surgeries and that I have not been positively diagnosed with the disease yet.
Then this morning I received an email from the GI surgeon who did my hemicolectomy. I had emailed him the day before to be proactive about checking in with the rare cancer specialist here in town. He said in his reply that he didn't think all of the follow up care suggested by the specialists was warranted. He said I was not at much risk for recurrence and that he had already spoken with the cancer specialist about my case.
Ugh... Nothing like thinking deep down inside that you may be over reacting, and then having a doctor basically tell you that you are.
Strangely though, later in the morning I got an email from his office asking if I could see the rare cancer specialist on Monday early morning, before the office is actually even open? Ok?
It ended up being an emotional day. (I kept most of it balled up inside, but had a small breakdown at the urinal in the men's bathroom at the visitor center of the park I work at. Luckily there was no one else there!). I have since decided to be my own advocate. I will continue on the path the specialists have suggested. It is my health, my life, and my future. Not a doctors. I am going to take the next two days off from research and planning, and I am going to enjoy my family. But I will make sure that I am getting the care and support I need so that my family and I can have a piece of mind that we have nipped this thing in the butt.
I have some things going for me in this whole process that make sense to bring up and think about often. This has been caught very early. Of the few folks who get this, they do not have advanced warning like I do. For me, at the first sign of bad stuff, I will get surgery and care and should have a great chance at living a normal life. In reality, I may never even get the disease. There is a big difference in risk and occurrence.
Needless to say though, it is hard for someone as young and healthy as I am (well, not as young as I used to be!) to go from being in tip top shape and with fairly littles worries in life, to fearing that my life has the chance to be cut short due to the miscues of a surgeon. "Reality Check for Mr. Jenkins, isle 32 please!".
Remember that we only have one shot at this ole world, make it count. I know I sure am going to try harder than I was. And in the process, if you see a guy in a uniform tearing up in front of a urinal, he's probably just having a rough day.