I have been keeping some developments sort of to myself. I’ve shared them with some close friends and family as well as with my series of doctors, but I’ve had a lot of wrestling to do with the ideas before I finally got to the point of being able to share. I’m still pretty uneasy, but here goes.
First of all, I’d like to explain a little bit about why I write here. Back when I started the blog, it was a way for me to process my new living situation. I had either been in school or working almost all of my life, and suddenly being away from both of those things was, of course, exciting, but mainly terrifying. So I wrote. It became an important way for me to think through my reflections in a cohesive manner and also a way to leave them behind. Then it changed and became a way for me to learn to be brave. That’s the newest feeling I get from writing- a sense of bravery. It’s almost like once I write down that I can do something, then I can. So I write. I’ve been asked how I could possibly share things so private and my answer is simply that I have to. I need this release and, selfishly, the encouragement I get from others. I get positive feedback. I get “attaboy”s. I get people telling me they felt that way, too, and I’m suddenly not alone. I need it.
Now let’s back it up to my first appointment with my breast surgeon. At some point I’m going to have to write about him and my relationship with him as my doctor, but for now I will just say he’s really smart and extraordinarily sure of himself. He also has a tendency to think that if he has an opinion, that’s just what the patient will want, but I digress. The first time he saw me shirtless he said, “Oh. You have hidradenitis. That complicates things.” I had literally no idea what he was talking about. I’ve got a pretty readable face, so his next words were, “And you haveno idea what that is.”
It would seem that the small, pimple-like growths under my arms, the ones which hurt unbelievably and rupture and make being in anything sleeveless incredibly uncomfortable emotionally, the ones which no fewer than three doctors told me were just pimples because of my weight and that they’d go away if I lost weight, are an actual medical condition. They are constant and uncontrolled sources of infection. In fact, my first mastectomy incisions became infected as a result of this skin being so close to where I was sliced and diced. Unfortunately, the only cure for this condition is removal of the skin which has the growths. Fun. So my doctor suggested that before we do any other surgery all of that skin needs to be removed. That sounded scary to me. How would they do it? Where would the skin come from? A million other questions about pain and grafts and glands and scars were buzzing through my head. I had no chance to ask any of them. There was more.
Here’s where my weight came up. It’s inevitable that it will in any medical situation. I sigh. My doctor runs down the tests I’ve had: great blood pressure, great cholesterol, great organ functions, etc. He runs down the programs I’ve tried, books I’ve read, doctors I’ve worked with on my weight. He sends me to another specialist and I am put on a program for a gastric bypass. Whoa. I’m a perfect candidate for this surgery, apparently, and it is probably the only way for me to really lose weight. This will give me loose skin (how pretty I will be!) which can then be used to sew me back up when my hidradenitis is excised. This will also allow me to have reconstruction surgery as I have my double mastectomy. This is also when I find out that my weight made anesthesia an issue during my last surgery. Apparently, I didn’t breathe so well. The hits keep on coming!
Of course, these were all presented to me as options. Strongly encouraged ones, no doubt, but options nonetheless. After multiple doctor visits (I sort of squashed them together here) and agonizing days and sleepless nights thinking, I decided that this sounds like a good plan. There’s just one catch to all of it: now my mastectomies are a lot later than anyone had wanted them. One doctor says fine. One doctor says fine, with radiation. One doctor says, NO.
Clearly there’s still a lot of decisions to make. There are still lots of options. I know in my heart that I want as few operations as I can manage and as many long-term benefits as I can squeeze in. I know where my hopes lie, but we will see. There’s a lot of insurance and specialists to get on the same page. Still, in this process there is one incredibly valuable thing that I have realized, and which is as the patient, I’m allowed to say no. I can listen to what’s recommended until the doctor is blue in the face, and I can say no. I don’t have to do anything I don’t want to do. If one doctor wants radiation and another doesn’t, I can go with my gut. If one doctor says I can’t wait 18 months to have my mastectomies and another says I’ll be fine if I’m monitored, I can make my own decision. There’s no surefire answer to any of this. At the end of the day, I have to be ok with whatever I decide on my terms, and I finally understand that they really are my terms. I’m the client. They work for me.
That’s my big deal. It’s a lot to handle and I’m lucky I have a support system of people to help me with the decisions and back me up. Let’s just say, I can’t wait for the next year to me behind me.
One thought on “My big deal”
What a mess! I’m glad you found out what the infection under your arms is. I had terrible sores on my back that never healed. Well, I had a lot of sores all over that never healed, but my back was the worst. It is completely covered with scars, and I never wear anything with an open back. And you know what? It was food allergies. I have been seeing allergists for at least 30 years, and no one ever said a word about this… or my hives (although that didn’t start until after the Peace Corps). And then, I cut out potatoes (because they make me tired), suddenly the number of open sores was cut in half. And then, when I cut out grains, nightshades, sugar, nuts, and pork, the vast majority of the non-healing sores went away. So, screw them and their “oh, you are just fat” crap. If it helps, doctors are often very unpleasant to me too. Since I’m not overweight, they just treat me like I am stupid (although so far Russian doctors don’t do this). This sounds like a pretty insane road you have ahead of you. I hope you are able to find a way to get through it all. We all love you. Don’t give up! (Although that’s easy for me to say. I don’t have to go through it.) *hug*