Last Tuesday, I flopped down on my bed and started reading Everything Rustles, a collection of personal essays by Jane Silcott. I'm reading it for an MFA assignment, but I'm reading it because I have shared mischievous glances and entertaining chatter with Jane during residencies. She is a mentor in my program, although she works with the opposite cohort of students.
The third essay, "The Goddess of Light & Dark," had me grabbing my phone and messaging Jane to tell her that I was laughing. And boy, did I need that laugh right then. I was just home from Halifax, and that meant there was no longer any distraction to keep me from focusing on the next major date on my schedule.
"Women's" Medical Stuff
I've thought about this quite a bit. There are certain conditions we just don't talk about in polite company. If we did, though, perhaps I would have persisted in getting a diagnosis for myself sooner. So, I know I will end up writing an article later and shopping it around (that's what we writers do, after all). There's no reason not to share the basics with you here.
If you're squeamish or want to keep the Barbie/Ken version of anatomy in your mind, stop reading now. I don't have that luxury, so here goes ...
When I was a child and I had a cold and a sore throat, I didn't complain much. By the time a doctor removed my tonsils when I was 10, he said the back side extended halfway down my throat and "looked like cottage cheese" from all the scar tissue. We can only judge pain by what we've experienced. My 3 on the scale might be your 8, or vice versa.
So, for many years, I listened to doctors tell me that all women have problems during their periods. Pain problems. "Flow" issues. Primary care folks, gynecologists, they said the same thing. I suppose that's because I didn't arrive in their offices screaming. Personality-wise, that's just not me.
Following all the doctors' advice, I took more ibuprofen and tried to function, but eventually reached the point where I was spending a quarter of each month hiding out in my house. Even at that point, I kind of just pulled up my big girl britches and dealt. A few colleagues knew why I'd turn white and suddenly have to go home occasionally, or why I'd rather take calls than meetings sometimes.
Finally, after I went freelance last year, I started taking time to actually notice my body again. To stop thinking of it as the lump of flesh that got my brain (the only part of me that mattered, work-wise) from place to place. I changed the way I ate, at least at home, and with the exception of ice cream. I changed primary care doctors. And in April, I saw a well-respected gynecologist who listened to my symptoms and told me what I already knew: They weren't normal.
It was evident from the very first set of images that I have endometriosis, quite possibly stage IV, the most invasive level of the disorder. No birth control pill or hormone-modifying treatment would change this. Surgery was the prescribed fix from the very beginning. Repeated imaging added to the list of organs and tissues that need attention. My left arm would just recover from the bruise before another blood test was ordered. There was a cancer scare in May, later relieved. I had to start taking liquid iron supplements to raise my ferritin level (an indicator of the body's iron stores) out of the basement. It's been a heck of a summer.
I've learned what a low-residue diet is. In fact, it's what I've eaten all day yesterday and today. Tomorrow, I get to drink clear liquids all day, pop a couple of Reglan, and chug more clear liquids mixed with a bottle of Miralax. Boy howdy, that sounds like fun.
Thursday Is Surgery Day
Dark and early on Thursday morning, my mother will drive me to the hospital. If all goes according to plan, I'll be home before evening, sleeping off the after-effects of general anesthesia in my very own bed. That's because I'm scheduled to have laparoscopic (minimally invasive) and hysteroscopic ("noninvasive," performed through the cervix) procedures. Within a week or two, I should be back to some kind of "normal," whatever that looks like.
There is always the chance, though, that the doctor might have to convert to a laparotomy (open surgery, with a large incision) while I'm on the table. If that happens, I'll be in the hospital for a few days and recovering at home for weeks.
I won't know until I wake up and see the bandages.
Whether the procedures go according to plan or not, the ramifications are the same:
- Ovaries. Both of them now appear about the size of baseballs, distorted by blood-filled cysts called endometriomas that have infiltrated them and taken over. The goal is to drain each one and gently, carefully, remove each cyst wall to discourage recurrence, then close the ovaries and let them heal and shrink back to their normal almond/walnut size. In reality, I will be very lucky if I keep them both. It's more likely that my doctor will fix one and have to remove the other.
- Tubes. Both of my fallopian tubes appear to be blocked, which means they may actually be stuck to the ovaries with endometrial adhesions, like sticky scar tissue. Each one appears to have developed a hydrosalpinx. That means the fluid that would normally flow through the tubes is backed up inside them, turning them into sausage-shaped cysts of their own. Fixing them isn't advised. So my doctor will likely have to remove them both.
- Uterus. This has become the easy part. My doctor will remove the submucosal fibroid that's taken up residence inside, using a special system to shave it down to the level of the uterine wall.
- Everything else. Endometriosis doesn't play zone. It tends to be more opportunistic. So while my doctor and her tiny tools are messing about in my insides, she'll look for and remove adhesions and implants that may be on my abdominal wall, bowel, bladder, ureters, and whatever else.
The most important goal is to get the missing quarter of my life back. Next is preserving normal hormone function for as long as possible. Last is preserving any fertility options at all ... or rather, the only one that seems to exist anyway, which is IVF. On the off-chance that long overdue meet-cute happens in the not-so-distant future.
How I Feel
I frequently operate according to logic. It's armor. It works. I am actually an acutely sensitive person, but lately I've wondered if I even have the ability to tap into true emotion anymore. Is it a muscle you lose without exercise? Would I pull a Calypso, as in the third Pirates of the Caribbean, and fall to pieces in spectacular fashion? This, I do not know.
Through everything so far, I've read the medical journals. I've understood the options, what few there are, and the risks, of which there are several. Ultimately, though, this is not where I ever expected to find myself. I thought I'd be married, with kids, long ago. Facing this situation under those conditions would be simple. No particular loss, as long as the hormones kept flowing. Forget this fertility stuff. But I'm not married. There are no kids.
There's just me. And hope. And plenty of normal things that need doing after Thursday. I don't really know how to feel about that.