Sunday, July 21, 2013
At last my GI doctor appointment, my doctor gave me a study to read about colon cancer in families, who is at elevated risk and it also included FAP. It was an interesting read and I urge you to also read it when you get a chance. Preferably after you've finished reading this post ;)
The study reminded me of my own desperate need to stop this familial cycle so that I may be the last one in my family with FAP. In a Medical Angels and Demons, I discussed my gynecologist who performed the Essure sterilization procedure for me so that I may not have to worry about passing on FAP. I respect that this choice is not for everyone. For me it was though. I've seen what FAP is capable of with my grandfather, mother and myself. Others in my family have also been affected by FAP and colon cancer. I've seen the horrors and I don't want to risk that for a child of my own. My mother was diagnosed with FAP and colorectal cancer before I was even 3 months old. At 3 months, I almost lost my mother because of the FAP and cancer. I don't know if my mother would have taken the chance of passing on FAP had she known that she also had FAP and how it would affect her and me. My grandfather had already battled colon cancer prior to this and he would again battle the cancer causing FAP as I neared adulthood. After my diagnosis and surgeries in grade school, I became enraged and depressed. I blamed my mother for all the medical misfortune I experienced. Afterall, she was the one to give me FAP so in my darkened mind, it was her fault. I blamed her and my doctors for years. I was consumed by hate and despair and wanted nothing but revenge. It took me several years to accept what happened to me and to realize that it wasn't my mother's fault. It was a very tough time for her, to watch her child suffer mentally and physically because of the FAP and what it's capabilities.
That 50% chance is too great for me. In my family, the FAP polyps have increased earlier in age with each generation. That isn't to say that it would for my own child, but it's not something I wish to discover. And in the study I referred to earlier, colon cancer is still an elevated risk for first degree relatives even when it was diagnosed over the age of 60! Colon cancer isn't slowing down and I've seen enough of it.
The risk of pregnancy and childbirth for myself is also far too great. In Medical Angels and Demons, I also discussed why pregnancy and childbirth is dangerous for me. Even as a child, I knew that pregnancy wasn't right for me. Although I didn't fully understand pregnancy and childbirth at that age, I knew it wasn't the right choice for me and it seems as if everything that has happened to me in life has helped to ensure that it would be difficult to even attempt pregnancy. And I'm absolutely fine with that!
But just because I don't want to risk having my own child with FAP doesn't mean that I'm stopping there. Because I would really like to have my own child, just not with FAP. I've researched IVF studies and have come across successful cases of individuals using IVF to only utilize eggs without FAP. Unless something changes, I have a surrogate on the wings who has agreed to undergo IVF with the fertilized egg of myself and my husband so that we may have a chance of a child. Even then it may not work due to the inability to have a guaranteed full term pregnancy and childbirth, but this is a risk I'm willing to take. There isn't any other option in my mind in order to have a biological child without FAP. We've located a fertility clinic that we're hopeful about and after harvesting eggs, we're given 6 attempts at IVF. We'll have one shot at this, and if it still doesn't work then fate has spoken. My husband and I have discussed adoption as an alternative if the IVF is unsuccessful but at this point we don't feel like it's the best choice for us. That may change though and we're open to revisiting adoption.
Right now, IVF is our plan and as hopeful as we are about it's success we know that it may only be hopes. This has been the long time plan of mine and fortunately I married someone who is on board with it. As the time approaches for us to start the IVF process, the further I'm conflicted between hopefulness and fear. I don't want to plan too much or become too hopeful as the spiral downward if those hopes are dashed would be devastating. In an effort to protect myself, at least some, I focus on the improbability of IVF working for us and I try to not think of a future with a child so that if IVF is successful with a pregnancy, then I can enjoy planning for a child's life and future. There are so many things I'd love to experience with a child, so many things I'd like to do for a child. I'd love to plan vacations, educational activities, birthday parties for a child. But until then, if I let myself escape in a bubble of hope in these fantasies, I may just be own worse torturer. And so I wait, we wait, and hope.
Should it not work out as planned, we will accept the decisions we've made and with the help of counseling move forward. It is all too great of a risk for me to allow a child of mine to live with and endure a life of FAP. Again, let me reiterate that this decision is not for everyone and I whole heartedly respect anyone else's decisions regarding their family planning without judgment.
This is my life with Familial Adenomatous Polyposis and Short Bowel Syndrome. I was diagnosed with FAP as a child, underwent total colectomy at age 9. I experienced life threatening complications resulting in 4 more surgeries that year and developing medical PTSD. I had an ileostomy for 6 years before having it reversed into a straight pull-thru that also resulted in life threatening complications requiring an additional surgery the following year. In 2021, I required my 8th surgery to remove my gall bladder due to gall stones and FAP. This surgery exacerbated my, at the time undiagnosed, Abdominal Migraine which is now being treated.