Raw: F.A.P. & mental health
Originally written November 2018: My main worry at that time was the precancerous polyps in the stomach, which were finally biopsied and diagnosed 1.5 years after my colectomy, thanks to a new colorectal surgeon who at least knew to do that, though his prognosis was incorrect: you cannot pluck polyps out 30 at a time! Correct prognosis with low-grade dysplasia: Surveillance via upper endoscopy with a special camera 1-2 times/year.
I have sometimes cried at the thought of no longer being there for my son.
Some people are prone to freaking out once in awhile. People with F.A.P., more so.
When the image of your overall health and wellbeing is shattered, there is little recourse to feelings of automatic security that people of normal health have. The best security I can have is temporary, and comes every six months or so when I have to go to the city for a scope (the doctor goes down my throat, into stomach, takes biopsies of all the sections of the polyps therein, and goes into the small intestine to scope and burn out any polyps in there, as well as up my butt); if they don't see an increase in the growth of the precancerous polyps in the stomach, then I walk out feeling relief for a moment. Polyps in the stomach cannot be removed, Sloan Kettering says, as this is "biologically illogical." They'd only grow back, I was told, since the body produces polyps due to an APC gene that goes blank less than halfway through. There are hundreds of polyps carpeting my stomach.
Yesterday I had a two-part meltdown. Sometimes I feel at a bodily level the sense of a time bomb. Sometimes when I wake up to use the bathroom in the middle of the night, I realize the reality, and ice seizes my throat as tears glide out of my eyes, and I wonder what reality is in the dark. Most of the daytime I think about other things as I am busy with my son or finding time for editing or translation work.
Last night, the breathing became difficult as I held on and let the breath go out slowly, and with great difficulty. Inside I was quaking, as happened this time around last year before my scope at Sloan Kettering. I was dealing last year with the new news that, of the hundreds of polyps in my stomach, not all were the benign kind. The reason I quiver at my very core is at the thought of having to say good-bye to my son. The helplessness of the hospital bed is something I'm not too unfamiliar with. I can't imagine going back to that bottom of the pit with the vivacious love of a son I have. I can't imagine it would be easy to lay in a hospital bed and fight the fight for him. I felt the heart breaking inside my chest at the helplessness, as if it is always actually breaking, and I merely listen in from time to time, and feel that reality at rare moments. It needs to be felt, but it is hard to go through, and circumstances have to fall in place for the release to happen and to be seen through.
I am acutely aware that only someone with a disease like F.A.P knows what I am talking about. And even then, when people survive the surety of colon and rectal cancer thanks to the disease by having a very difficult colectomy and life-altering surgeries, there are percentages of other cancers that can come. I am in a tiny subset of people within an already rare disease—which many doctors know nothing to little about, and the patient has to be the advocate—as I have the extremely rare case of having precancerous polyps in the stomach, which means there is little to no data or research on how these progress in the stomach. For the colon cancer, 100% chance of cancer by age 39 or 40, depending on which literature you read. What about stomach cancer? I know of a woman with F.A.P. who just had her stomach taken out at age 50 or so, due to the polyps in her stomach. (And now, in 2020, I know of F.A.P. patients younger than that too who have had gastrectomies due to cancer growth.) She has one digestive organ left: the small intestine, which is itself prone to having polyps, as we know from the number of people with F.A.P. who have to have a very complicated Whipple procedure, usually in their 50s. Imagine the weight loss and the weakness. More and more are writing in the forum about gastrectomies and whipple procedures. I heard a response to my posted question from another woman on a F.A.P. forum whose dad died between scopes; he died within 7 months of the polyps in his stomach becoming cancer. Sloan Kettering people told me I can't believe everything I hear from online people... When they don't have the data either, I'm not as reassured as I could be.
So, that is my nutshell of fear factor. I always am terrified, increasingly so and against my will, when it comes time to go to Sloan Kettering for a scope. And unfortunately, that is the time of year I am coming into. The best one can do, with any lot in life, is to learn how to manage. I manage my disabling condition every day, which is much easier at home. How to give myself support or find emotional support for the actual disease is not easy, since I cannot weigh too heavily on the few who are close to me. So I am writing here, for the sake of documentation.
Following this diagnosis, I talked with the father of my son—I need to be as pro-active as I can in setting things up for my son. My son's father says he understands where I am coming from, and worries for me. At least it is good to have someone who thinks about the things I have to think about. For me, it's involuntary.
I rarely talk about this reality—writing is so much easier—and that's just how it goes.
I probably need to find a therapist or psychologist again to help deal with the grief. The one I saw at the Cancer Center last year diagnosed me with grief and trauma. This odd form of grief surrounds separation fears regarding my son. I have told my body and my son that I will live for him, that I will do all that I can to be here. I pray and give it to God and ask Him to help me live the rest of my life in the best way possible to Him. I surrender always and again.
I hope my son will know his mother's love always, always, always, and that I can see him through all of his childhood and adolescence and into adulthood. That fear and that hope are so tightly entwined that it is almost stifling at times, and I have to let out the breath as if through a tiny hole poked in the taut red rubber of my heart. It makes a sound that I hope to make meaning of—and for others too if possible.
Perhaps a book of inspiring thoughts to help anyone who has gone through the surgeries and the worries I have from the a disease like mine. One can't ignore reality: so how does one best make meaning of it? Because the illness is invisible, the support is not always there until I speak up or seek it out. And even then.... you really have to have a serious illness or bouts in the hospital or genetic mutation to understand the helplessness and the complete crisis one simply cannot always escape mentally or emotionally, let alone physically.
Escapism only works so much (it doesn't really). What is needed then is love, purity, awareness, surrender, acceptance, faith, and trust. And the will within to find the support one needs, both within and without, and with that movement of within and without, the breath.
I am blown away that I had my son in the knick of time to have symptoms induced by pregnancy, as the thousands of polyps in my colon were high-grade dysplasia. It truly is a miracle that I am alive. I have so much to be grateful for, and yet so much yet to go through with my health I feel...
Am I being pessimistic, dramatic, optimistic?
[Update from October 8, 2020: Or just totally normal?]
