One thing I have been exceedingly thankful for through this whole process has been the excellence of my doctors. I was reminded of this last week when I went to see my gastroenterologist. (This is a source of amusement for me. While most people my age probably barely even have a primary care physician, I have a gastroenterologist, two colorectal surgeons, and an oncologist.) While many doctors, even specialists, would say “F-A-what?” my gastroenterologist is well acquainted with FAP and is a great source of help and information. He has agreed to be my long-term “FAP doctor” and will do my annual scopes and blood tests.
We also talked about what kind of testing we should do with Evie and when. We have decided to do some early genetic testing with Evie, probably a little bit after she turns one. The reason for this is because there is a small risk of hepatoblastoma associated with FAP. That’s an extremely rare childhood cancer of the liver. Even with FAP individuals, the odds of having hepatoblastoma are supposedly between 0.82% and 1.5%. What’s scary is that the onset of it is usually around five years of age. If Evie tests positive for FAP, we’ll have regular sonograms done of her liver to be safe, probably until about age 10. This is terrifying to me, but I am once again left with prayer being my best recourse. There are the numbers: 1 in 2 chance of having FAP, and about a 1 in 100 chance of having hepatoblastoma if she’s FAP positive. We are doing everything we can do medically to be on top of this. It is tempting to say, “All we can do is pray”, and while yes, that is true, it makes prayer sound like a last resort. It should be our first. Would we say, “All we can do is make our requests known to the Almighty Lord and Creator of all who loves us fiercely and has made all things according to His good and pleasing purpose”? If that’s all we can do, then we’re doing pretty well. I sure would appreciate you praying with me as Evie grows.
My gastroenterologist and I had a discussion about the regular medical tests that I should have from here on out, and he said something about how it may seem a bit paranoid. We agreed, though, that when you are 27 and have already had cancer, a bit of paranoia seems in order. The fact that I had cancer is still surreal to me. According to the research I’ve done, the mean age of colon cancer diagnosis in untreated FAP individuals is 39 years with a range of 34 to 43. It is amazing to me how aggressive my case was and that we caught it in time, especially since I don’t have a family history of it.
This brings me to something I’ve been wanting to write about for a while. Until just a few months ago, I felt young and indestructible. Well, I still feel young, but you get the point. When I was in high school, I started having some bowel issues, namely diarrhea with some blood. I went to a doctor who sent me to the hospital to give a stool sample. After some time, the hospital got back to us and said that yes, there was blood in my stool, but they couldn’t find any parasites or bacteria that could be causing it. I was told to take antibiotics and then went on my merry way. I figured that since they couldn’t find anything wrong, this was just something I could and should live with. So I did, for ten years. Several times I looked my symptoms up on WebMD and thought, hmm, maybe I should get a colonoscopy sometime, but I was convinced that I couldn’t have anything so serious as the search results suggested. What finally got me to a colorectal surgeon wasn’t even this. It was something completely unrelated, something caused by my pregnancy with Evie. While I was in the appointment, though, I just figured I’d mention the chronic diarrhea to the doctor and see if she had any ideas. That’s what finally got me into the hospital on December 13th having a colonoscopy. That’s what probably saved my life.
So this is my point, my fellow young and indestructible friends: If something is up with your body, don’t ignore it. I’m not an advocate of hyperchondria by any means. I am exceedingly slow to go to the doctor. Ten years slow, apparently. But you know your body. You know what’s normal and what’s not. Most times, it probably isn’t anything serious. But sometimes, it is. Sometimes, you can’t wait it out. One reason I hate going to the doctor is because of the cost. I was very close to canceling my colonoscopy just because of how expensive it was going to be. But when it comes to your health and your life, don’t let money cloud your judgment. You will find a way to pay the bills. People will help you out if it comes to that. Money can be made much more easily than a disease can be undone. And don’t feel foolish if it turns out to be nothing. You will feel much more foolish if you’ve waited too long and are past the point of no return. So this is my request to you, my friends: If you suspect something’s up, go to the doctor. Sure, it might be nothing. But it might be, oh, a crazy genetic disease that’s giving you cancer. You won’t know until you go.
Speaking of cancer, I have a PET scan on Wednesday to make sure mine didn’t decide to hitchhike anywhere. I sure would appreciate your prayers that it stayed put in my colon. My oncologist feels pretty confident that I don’t have anything to worry about, but again: a bit of paranoia seems in order. Thank you all for your encouragement and prayers. I am blessed. May God continue to bless you and your neighbor through you!
