Nuts in May

I have been busy but then, who hasn't? Being busy is no excuse. I hate to hear other people use it as an excuse because when they say "I'm too busy," it sort of makes me feel like they think I am not busy, I'm just laying around watching life past me by.  However, I have been busy gathering information in order to increase the feeling of safety that I seem to need during this time in my life. Information makes me feel safe (as does food). Right now, feeling safe is a high priority and I am trying not to eat that much because my lymphedema therapist verbally accosted me again during an appointment with her yesterday. She complained about my weight again -- telling me how important it is for me to lose weight. I told her that telling a fat person (who's habitually on a diet) to go on a diet is like telling an alcoholic at an AA meeting, not to drink. Somehow we have to come to that discovery on our own. I am a food addict. I know this already - I have been studying food addiction for years, specifically my own (because that's all that matters to me). And because I've been on a diet for the past 50 years, give or take, I don't know what I can do while standing in front of this woman with my over-sized lymphedema-ed legs, my big butt and my recently chemo'd body to get her to understand that I am on a diet. I even get defensive as if I am not really watching my food intake and I feel the need to come up with more reasons to tell her *how* I am dieting and exercising. I don't know why I bother saying anything. I don't even feel like I am an adult when she starts her lecture. I feel like a little kid again.

 (She really pushes a button. Can you tell?)

So I got the CT scan results and there was no visible cancer. Problem is the cancer I was diagnosed with never showed on a CT scan from the beginning. I also got a copy of my operative report. I wish I'd asked for this months ago though months ago I would not have had the knowledge I have now and wouldn't have understood the operative report. The operative report actually states,  "The intestines were allowed to fall into their usual position." That is not all it says. But that was the really gross part. Now that I think about it, if they hadn't let my intestines fall back into their usual position, I might look thinner to the lymphedema therapist. The surgeon should have hacked out a pile of them and thrown them in a bucket. (Maybe that would have cured my diarrhea?) 

I have visited several doctors for opinions and still have one more (final information gathering-type) doctor visit. I visit doctors for second opinions but as I mentioned to a friend, I have received  more opinions than two. Unfortunately every doctor has described themselves as being on the fence. The oncologist, the radiation oncologist, the 'second opinion' radiation oncologist, the lymphedema doctor  - they are all 'on the fence'  though I know these fences are leaning. In other words, we are not talking stable fences. They are leaning towards what they think will be the closest to a cure for my cancer diagnosis. They are not leaning towards the "let's be really careful of your existing lymphedema." They think radiation would be of benefit by ridding the pelvic region of any cancer cells, yet, they have no idea one way or the other if there are any cancer cells still there. It's all a big (FAT) guess. (Maybe that's what's caused my fat - all this guessing.)

In some instances radiation causes lymphedema (by creating scar tissue and by damaging lymph nodes and channels) which leads me to believe that if I have radiation, my lymphedema *could* easily become worse (and then I'll just look even fatter to my lymphedema therapist). No one knows how much worse and no one knows for sure if the lymphedema will get worse. The lymphedema doctor said my chances were "one in four" of suffering more damage. The radiation oncologist told me I have a "zero to 3% chance of damage." The Stanford radiation oncologist said he thought I had "100% chance of damage" but he did not know *where* the damage would take place or how extensive the damage would be. Most of the doctors have no real data with which to base their guesses. None of the doctors I have spoken with have treated a person with radiation who already had primary lymphema. What they usually see in treatment is a person with secondary lymphedema -- that is lymphedma that came about due to surgery or radiation.

Even with all this information gathering most of which does not mean the best of outcomes for me regardless of my choice, I am probably still going to start radiation in a couple of weeks. My radiation "simulation" appointment is scheduled. This is the appointment where they tattoo me. But they will have to get over the initial hurdle of finding my hips and pelvis. And according to my lymphedema therapist, this finding could involve a small army of private detectives.

While I'm in radiation therapy for the cancer (that no one knows for sure if I still have), I will be doing what's called CDT (Comprehensive Decompression Therapy) with the lymphedema therapist who thinks I'm too fat. For 23.5 out of 24 hours a day, 7 days per week, I will have to wear Jovis with 6 layers of short-stretch bandaging. I will also get to wear my made-to-order adult diaper. I will be in radiation for 4 .5 weeks while visiting my anti-fat lymphedema therapist on a daily basis. And after all this bandaging and radiation (and potential for verbal abuse about my size), I'm not sure I'll feel any safer once all is said and done.