Thank you for all of the kind words, encouragement, solidarity, and even generous gifts during the run up to my tumor removal surgery last week. I’ve just returned from my post-op appointment with my gynecologic oncologist, so I can finally share an update on my condition. Long story short: I’m “recovering like a champ” and will be able to shave a week or two off my initial recovery estimates. But the full story is much stranger. Read on if you dare – things get a little gory.
A Recap: The Plan
In November 2006, I had an emergency laparotomy to remove a 10 centimeter dermoid cyst (aka mature ovarian teratoma) and part of my left ovary. I was told that the odds were extremely low that would ever happen again.
In March of this year, a pelvic ultrasound revealed what was thought at the time to be four masses (two on each ovary). An MRI a few weeks later (prompted by an elevated tumor marker) showed my liver was totally normal, but the radiologist took the rare step of formally diagnosing the masses on my right ovary as endometriomas – a form of advanced endometriosis. (MRIs are 95% accurate at identifying endometriomas.) The generally recommended treatment for symptomatic late-stage endometriosis is a total abdominal hysterectomy, and my oncologist and I settled on that as the plan should the diagnosis be confirmed.
There was a footnote in my surgical plan – in the highly unlikely event that I was in both the 5% who were MIS-diagnosed with endometriomas AND in the less than 5% of patients who have a dermoid cyst reoccur on another ovary, then DO NOT perform the hysterectomy and simply remove the tumors that had been causing significant pain, digestive trouble, and hormone imbalances.
The Day of Surgery
We headed into the hospital prepared for an inpatient stay. I woke up with yet another migraine, making the entire intake process even more painful. My surgeon was attentive, visiting several times before the procedure and talking through my surgical plan in detail. As we discussed the plan, I even considered asking him to make it an all-or-nothing situation (essentially, remove everything regardless) but I didn’t want to make that decision in a compromised state, and said nothing. Besides, he re-reviewed my MRI findings and we both knew going in that the odds were overwhelmingly in favor of this being endometriosis.
And then the discussion moved on. The anesthestiologist thoughtfully added sumatriptan and caffeine to my post-op orders to help with my headache, and somehow managed to start talking about Disney resorts. The time came, my anesthesia began, and I was wheeled into the surgical suite. I remember seeing the DaVinci robot waiting for me, sheathed in plastic in its enormity, bearing remarkable resemblance to Futurama’s probulator. I moved onto the table, with its perplexingly hot pink posterior-rest. Then the mask, and then I lost consciousness.
I awakened, and like every other surgical patient went through the whole “Who am I? Where am I? What time is it? What happened?” routine. But the answers didn’t add up.
- CHERYL: How is it only 11AM? I went into surgery at 9. What happened? Did they take everything?
- RECOVERY NURSE: Well, cystectomies don’t take that long.
- CHERYL: What do you mean? They didn’t perform the hysterectomy?
- RECOVERY NURSE: They didn’t find endometriosis. It was a large dermoid. They actually found a trachea.
- CHERYL: … a … what? (oh maybe I’m dreaming this)
- RECOVERY NURSE: A trachea in the dermoid. Your family has more details.
So. I went to sleep expecting to wake up in menopause with no remaining reprodutive system, and instead woke up to find out I had “only” lost two tumors and some right ovary, and OH BY THE WAY I’D BEEN LIVING WITH A LITERAL TRACHEA IN MY ABDOMEN. If you’ve been wondering why I felt so poorly or suffered from so much pain in the last few months, THERE’S THE PROBLEM. My reality was far stranger than any fiction I could have considered.
Shock and Setback
Earlier, during the surgery, my family’s heart dropped when my surgeon came out an hour in, looking a bit surprised. He relayed the initial news that it was definitely a teratoma/dermoid, because the pathologist could immediately recognize by sight the trademark dermoid hair… and also, for the first time in his career, a trachea. That’s right, my accomplished oncologist with thousands of surgeries under his belt had never seen THIS. He came out again to confirm that no malignancies were found in intraop pathology, and to explain that he couldn’t justify going off-plan and removing any non-tumor materials. Apparently my uterus is “pristine” (things humans don’t actually ever need to know).
Of course, my family and friends at the hospital were thrilled to hear all of this. No menopause! Faster recovery! No cancer! No risk of endometriosis sticking around, because it was never there in the first place.
Fast forward back to the recovery room: they were already working on getting me discharged. What was expected to be inpatient became outpatient. I got my first Percoset and got transitioned to a chair to pass the discharge requirementas. My family came in and confirmed the early news I got from the nurses (a TRACHEA WHAT THE FUCK I WASN’T HALLUCINATING?) and take me home. While I may not have medically been in shock, I was emotionally in shock.
At first, we thought my first week of recovery would be fairly accelerated. I saw several visitors from my bed, and managed some crackers. But later that evening, one of my larger incisions opened up, which meant several hours in the ER getting closed back up. That experience scared me further, and also meant slowing things way down on my initial recovery.
Regret and Recovery
While my physical condition is less traumatic than anticipated, my emotional state is another matter entirely. I really can’t explain how horrifying it is to wake up expecting to be cured of pain, migraines, menstrual cycles and the need for further surgeries – and instead to learn that you still have a reproductive system and all of the migraines and pain that go along with it, AND your body has figured out how to asexually reproduce random organs AND may be capable of doing it again, but there’s no way to prevent it because you’re now a medical statistical anomaly, un-researched and misunderstood.
There are no two ways around it: I am depressed and horrified. I fear what my reproductive system is capable of. AND as a fun bonus, because both ovaries are traumatized I’m having mini-menopause due to a sudden drop in estrogen levels, with SEVERE insomnia, temperature regulation issues, and depression. Plus migraines and headaches. In addition to five wounds and a heavily bruised abdomen, of course.
The other news I got today was confirmation that (1) there was absolutely no malignancy and (2) there was absolutely no endometriosis, despite an extensive search for both. They removed masses from both ovaries (2cm from the left and about 5cm from the right), and part of my right ovary. My gimpy left ovary is now the big sister ovary again.
So for now, the work is to recover from this surgery. We’re still too early to determine my return to the “world” at large, but it will be a week or two earlier than anticipated. It depends on when my estrogen levels stabilize enough for me to sleep more than two hours a night, and when my incisions are healed enough for me to wear seat belts comfortably without pillows, amongst other issues we’re monitoring. And then later this year, monitoring begins again – since I’ve had bilateral teratomas we worry I might break the odds again and have a third recurrence. 🙁
Since I’m the woman who has to live with this horror, I will at least make full use of a few new jokes and titles. Since my ovaries have managed to create random organs asexually – and the parts they chose to reproduce happen to be a windpipe and possibly larnyx, required for speaking…
- I think it’s safe to say I may have the most feminist ovaries in the Pacific Northwest.
- My ovaries WANT A VOICE and they aren’t going to stop until… they make one?
- My body is so upset about women’s healthcare in the US that it’s learning to reproduce without men?
- From now on, I’m going to let my ovaries do the talking.
- I’m unforgettable. But mostly to surgeons.
NOTE: You don’t get to joke about it, I do. It’s like that Seinfeld episode. You have to be a part of the group to joke about it. And since the group of women who I know who have asexually generated an extra trachea encompasses only me, for now I am alone in the ability to make that joke. I earned these jokes with months of pain and suffering. But if you, too, have super feminist ovaries, I’d love to hear from you.
Recovery. Taking the time I need to heal – physically AND emotionally – and avoiding any tendency to rush lest I weaken my body and encourage recurrence. I’m going to be 100% healed well in advance of my fall speaking tour, which includes appearances at PAX West in Seattle (September 1), EuroIA in Stockholm, Sweden (Sept 30), Webdagene in Oslo, Norway (Oct 18 – 20), and at least one additional stop to be announced soon.
Once my fall speaking tour concludes, I’ll be going back in for another battery of imaging and tests. I will be aggressively watching for recurrence, and if there’s ANY sign of it, early detection will give me the most control over the date and terms of the hopefully-final-this-time surgery. It’ll be a hassle to go through this all again – and I hope that day doesn’t come – but no one can say we didn’t give it the old college try.
Thank you again for the support, empathy, and kindness. I still have weeks left in this recovery and months or years left in the war of attrition with my ovaries, but for the moment I’m on the mend.
FAQ: Are you in less pain?
Right now, I’m in different pain. Surgery is traumatic, my body’s estrogen levels have plummeted, and I have 5 open, bruised wounds. I am suffering from insomnia, wound pain, abdominal weakness, and repeated headaches/migraines. But there’s some hope that the abdominal pain I had from the tumors is over, and some other symptoms I’d had have abated somewhat. I’m also lucky to have many folks willing to help out where I need it.