When last I left you, loyal readers, I had just been cleared for activity after my spinal surgery After talking to Julianne and my coach I hatched a plan to do my Iron-distance triathlon on May 29th – exactly a year after my spinal surgery date.
TLDR: I have what doctors are almost certain is a benign dermoid cyst on my ovary and I’m having robot-assisted surgery to have it removed on November 29th.
The long story:
Coach Steve got a plan together and I geared up to start training again (for, like, the hundredth time on this ridiculous journey) I held tight to the fact that I just had to put in 9 months of solid work and this could be over Even though I had walked endless miles in my hallway, I was still out of shape for any serious workout, plus my shoulder was still injured from the botched steroid shot, so we started slow with biking and walking while I did physical therapy for the shoulder.
The workouts were going well, I was motivated to go out and do them (knowing that everyone was one day closer to finally crossing this elusive finish line.) I got fifteen workouts in and then I had to go to a different doctor.
I had some much heavier than normal menstrual bleeding during quarantine. I had a telemed appointment with my gyno and we decided that i would try birth control and that if that took care of it I could wait until after I was vaccinated to come in for an examination, just to be safe. The meds did the trick and so I waited. It was now late-July and time to go in to have both an external and internal ultrasound done.
Since I know that the ultrasound tech is not supposed to tell me anything, I knew things were bad when she asked “do you know that you have a large mass in your abdomen?” I told her that I did not and asked for more information. She demurred, I would have to wait for the report.
The next day my cell rang and it was a number I didn’t recognize, but considering what was happening I answered. I knew things were about to get worse when it was my gynecologist. I have never been called on my cell by a doctor in my life. The ultrasound report was back and it was “very concerning for malignancies [cancer]” I would need to come see her the next day and schedule blood tests for cancer markers and a CT scan to get more information about the mass and to see if it had metastasized.
I saw her and got the blood tests the next day and the CT scan the day after that. The appointment was difficult, she was incredibly kind but told me with tears in her eyes that she was very concerned, that I would need to get ready for a big surgery very soon – a laparotomy with multiple days in the hospital and then multiple weeks recovery, with additional treatment possible but unknown. She referred me to the head of gynecological oncology surgery in the healthcare system I use, who was the doctor who trained her. When she asked if I had any questions, I asked if they had any training in weight stigma and she she through about it for a minute and then acknowledged that they didn’t and that it was a problem. She ended the appointment by telling me that I could contact her any time, day or night.
We had to wait for results of both (fun fact – that type of blood word can’t be rushed with the labs that I use.) There were some good signs, especially that I was asymptomatic but overall I was not left feeling particularly optimistic. I made an appointment with the surgeon.
In the meantime I decided to go full on me with it, I started looking for a name for my mass, bought a tiny tiara for her and planned a photoshoot. I called my Best Friend (and first marathon partner) Kelrick to give him the news and talk about the name and he introduced me to an animated character named Lumpy Space Princess.
Lumpy Cyst Princess was officially named. I struggled a lot with the fear of being diagnosed with cancer, but I also realized that I’ve had the chance to live a life that has touched a lot of people in the world and so when I pondered the worst case scenario, I knew that I done what I could with the time, potential, and privilege that I had and that gave me some peace.
Within a week we had all the results. The blood tests were completely normal (negative for cancer markers) and the CT scan came back showing that it did not look like cancer but was a dermoid cyst on my ovary. These are cysts that we have at birth and they slowly grow throughout our lives often with no symptoms so it’s common for them to get quite large undetected. It still had to come out, but there was now “very low suspicion” of cancer.
I met with the surgeon and his Fellow and both of them were amazing. They answered my questions without weight bias. It turns out that he is a world renowned expert in robot-assisted surgeries, especially on higher-weight patients.
Since there was now a very low suspicion of cancer, my surgery went from urgent to routine. Because of COVID backups and the apparently very busy schedule of the robot (whom I have named Bertha after Shangela’s sewing machine,) I wasn’t able to get on the schedule until November 29th. (In truth I could have been scheduled on the 14th but I have a major talk to healthcare practitioners on the 15th that couldn’t be rescheduled and I wasn’t giving up that opportunity.)
I did my pre-meeting with my surgeon today and, again, he was excellent. The first difficulty of robotic surgery is called “steep trendelenburg position” This is a position in which the body is angled at 30-40 degrees with the legs up and the head down. it can be difficult to tolerate for many people for different reasons, including higher weight people. My surgeon isn’t as worried about that. Still he will have to put the camera in and make sure that everything looks benign before moving forward with the robotic surgery. If there is any concern, he will convert to a full laparotomy so that the mass can be removed whole rather than being drained and removed in sections. I also told him that, while he is in there, I would like the hysterectomy I’ve wanted since I was 20 and he agreed. He’s going to leave me an ovary for hormone production and take the rest, which is great new.
He talked about the processes that he uses to help higher weight patients better tolerate steep trendelenburg, including slowly titrating the angle to help patients acclimated. During our pre-appointment I mentioned a small study from 2012 to his Fellow, wherein they tried doing these surgeries at less steep angles and were successful. I mentioned that I hadn’t seen any follow up on it. She hadn’t heard of it and suggested I ask the surgeon. During my appointment with him he actually said “Now what’s this I hear about a study – maybe you can teach me something.” Now, I teach healthcare practitioners all the time and while many are open to the information I’m presenting, this kind of thing reaction always gives me hope. We talked about the study, how frustrating it is that it wasn’t followed up on since it could help higher weight patients get the care they need. He pointed out that over 15 years and thousands of surgeries he had only had to convert from robotic to laparotomy five times and only twice could it have had anything to do with weight.
I want to be clear that I am lucky and privileged in many respects here. First, I have excellent insurance and was able to afford the co-pays and deductible as well as being able to take the time to go to the appointments, get the surgery, and recover. Also I’m white, cis, currently able-bodied and currently neurotypical which are privileges that are always operating in my life. I have the privilege of both the educational background and personality that makes self-advocacy easier for me. This will be my third surgery this year (spinal, multiple sinus procedures at once, and now this as the grand finale) but none of the things that I required surgery for were things that could be blamed on my size and so I escaped a lot of medical weight stigma. I did not have to fight arbitrary BMI cut-offs and all of my surgeons and surgical teams have extensive experience working with fat patients and, knock-on-wood I did not experience much weight stigma in any of the pre-surgery, surgery, or post surgery processes. Again, this is down to privilege and luck, many fat people have experiences that differ vastly from mine and impact their lives and quality of life.
So I feel very comfortable with my surgeon and his team but, like with my spinal surgery, I’m going into the surgery not sure what procedure I’m actually getting and that’s really nerve-wracking. My surgery is super early in the morning so if he can do it robotically I am hoping to go home the same day (while my luck has held so far, hospitals can be extremely unfriendly and harmful to fat patients and I’d like to avoid being hospitalized if I can) if he has to convert to a laparotomy I’m looking at several days in the hospital. Julianne continues to be a hero in terms of getting things ready and supporting me through surgery and recovery – best. fiancee. ever! I’m filling my time by pre-writing for my blogs, newsletter, and social media accounts and I have several talks booked between now (including medical schools and groups of healthcare practitioners) that I’m really excited about.
In terms of my iron-distance tri, I’m not sure what this means. Once again I felt like I was on the path to finishing and once again I’ve been thoroughly derailed. I’ve been encouraged to keep fit during the wait for surgery, and I am, but I’m not training for the triathlon since the at least 8 week recovery I have in front of me means that the April date is no longer do-able and I psychological just can’t continue to train with no actual end date in sight.
So that’s where things are, thanks for reading! I’ll end with a piece of good news – I’ve started a newsletter specifically about the intersections of weight science, weight stigma, and healthcare. You can check it out here!