Fear of Beauty

I’ve been putting on weight - I’m up to 140 #, only 10 pounds shy of my “normal” weight. I got down to 113 in the hospital, so it’s a definite improvement. Friends say that I look better, and I can see in the mirror that I’m no longer ghostly thin. I’ve also been weaning off of the pain medications, which has been tough because I hurt more as a result. I don’t want to be on them but the trade off is painful. I feel like my head is clearer though, and possibly less depressed? Just wondering how I got here. If it weren’t for the radiation, I might be leading an almost normal life now. Second guessing the decision to get radiated. Who knows. There’s a surgery to create an internal reservoir in the intestines that would allow me to get rid of the external colostomy bag which I am going to look into. Testimonials say that life gets better after the surgery, not being bound to the bag and its limitations.

I am slowly returning to my life, which got shut off during months of procedures and isolation. I was fortunate to have had so many of my beautiful friends come visit me while at Cedars - thank you for coming to see me, I love you! A dear friend offered out of the blue to interview me for my photography book project and give me the transcribed text. We've already had two sessions and plan to meet weekly until we get though it. I've been meaning to write a book on photography, in the form of an autobiography, but getting this unexpected support and encouragement, as well as a vote of faith in the worthiness of the project has really inspired me to work hard on this. It is also the perfect project for me at this time, as I can write lying down, and edit at home where I have all my archives and editing equipment. I need something to do, as I have gone stir crazy. 

Things are still really tough, mentally and emotionally especially, but I am still here. I have the opportunity to say what I have to say and to share what I can. In addition to working on the photo book project, I expect I'll resume writing this blog and expanding upon it with perhaps a website with greater depth of information and a wider range of subjects. I have many story ideas for articles I want to submit to online magazines, on the topics of consciousness, spirituality, philosophy. I guess I'm beginning the process of reinventing/ recreating myself. No use in clinging to the remains of who I was. The time I have left is a gift and I'm going to spend it being creative, in a way that will hopefully benefit others.

I don't know what else to say. I'm at a loss for words, which is pretty unusual. My current state is unsustainable though, that much is known. Will this new operation improve my condition? On paper it's meant to, but there have been negative surprises every step of the way so far, so I am wary. This is a major procedure and I am worn down. I've executed an advance directive for the first time this surgery - instructions on what my wishes are in case I'm unable to make my own decisions, i.e. in a coma, brain dead, etc. I don't want to be put on life support, have asked for a DNR (Do Not Resuscitate), etc. It's pretty grim discussing the disposition of my "Estate" (more like a doghouse) with my folks. The idea is that the bag will allow me to eat and drink again so that I can regain my lost weight and strength, receive proper nutrition, and give my digestive tract time to recover from the damage caused by the intestinal blockage. The radiation damaged portion will be removed so that stool can move freely through the large intestine (what's left of it - about 4 out of the original 6 feet, not bad). 

I do look forward to being free from my toilet slavery and its attendant pains and woes. The TP bill will drop to zero. I'll reclaim two or more hours of my day (no joke). I'll get to eat and eat, and eat. Eating will become my new hobby. I have thirty pounds to gain back but I want to zoom right past my old weight of 150 and set a new record high. The most I've ever weighed is 170, and I'd like to surpass that. I want a buffer, a cushion of pounds to protect me and to reassure me like money in the bank. I don't want it to hurt when I sit like it does now, due to lack of ass. So it's going to be pretty weird, but at least there is an upside to look forward to. AND it's meant to be temporary (though not guaranteed), so it may just be a long 3 months or more. Ok, wish me luck!

The stent procedure a week ago was a bust. I woke up in horrific pain - the stent had already slipped and so out it came, soon after it went in. I was knocked out twice with Propofol, Michael Jackson's "milk" as he liked to call it. It is benign and not unpleasant, yet scarily easy at the same time, like waking from a nap. It's strange to wink in and out of reality like that.

I saw no real improvement from the dilation, and have been told that radiation has damaged the bowel and is unlikely to recover. The stricture (narrowing) at the surgery site is still there and possibly increasing. I'd wanted to allow my body to heal naturally on its own from this point on, but realistically it is not likely to happen. This leaves me with little or no options. Currently I am unable to take in enough nourishment to regain my lost weight and strength. I have malnutrition and am dehydrated. Slowly but surely I am wasting away. Going to the toilet is an ordeal every day, and a disincentive to eating more. As soon as food goes in, my system freaks out with gurgling and gaseousness and usually means a trip to the bathroom. I'm not living really, more just hanging on as best I can. Something needs to change, and quick.

I'm gathering opinions, but the consensus seems to be that I require a colostomy. The surgeons that operated on me say that it will be permanent. I asked for other opinions and found a surgeon who feels that it need not be permanent, so we're talking. There is an urgency, as I need to be able to receive nutrition before I get any weaker. Being on a bag would relieve my pain and the necessity of being near the bathroom all the time, as well as letting me eat and gain weight, but...colostomy. If it is only for a few months, I can live with that idea, but there's no guarantee that it would be temporary. There is little rectum left to work with, so if I go under, it is with the understanding that it may be permanent. What would you do?