It has taken me a long time to write this post because I wanted to be able to tell the whole story at once and then things got a bit complicated, and then I needed time to process.
If you’re not caught up on my journey with complex atypical endometrial hyperplasia, you can click here for when we found the polyp, click here for how they removed the polyp and other stuff from my uterus without hurting my TAC, you can click here for my diagnosis, and click here for my experiences midway through treatment
I have been through a lot. Since Malcolm and I started trying for a family, we have been on quite the rollercoaster, and this journey with hyperplasia has been no different. I have been debating just how much I want to reveal, but I think that if someone else is reading this, while on medroxyprogesterone for treatment of complex hyperplasia with atypia, and feeling the same things, she would want the reassurance that she is not alone… so here we go.
The first month was okay, I was scared, and sad that things were not going the way I had anticipated they would and I was making plans for six months out when we would get the all clear and everything would be okay. I mostly ignored the worry that I tend to be on the wrong side of the stats.
October was harder. I began to doubt that treatment would work. I started to have trouble focusing on school work, my marks weren’t the stellar high 90s that they had been last year. I felt like my classmates were annoyed at my questions in class. I knew that the questions I asked were stupid. I was stupid. And I was going to die sooner than later. I began to think that my friends were only hanging out with me because they thought I was smart and once they realized I was dumb they would want nothing to do with me. I also knew that Malcolm deserved a better wife. He didn’t sign up for this sickness and brokenness.
I was seeing a counselor at the school, and I had a way of painting a prettier picture of what was going on while I was in our sessions, telling her that it was tough, but I was surviving. Even still, she would give me little exercises and for a day or so the clouds would part a bit. I dreaded going to school every day. I would want to leave even before I entered the doors. What was the point of going to school if I’m just going to die anyways?
I had heavy bleeding for 27 days. It was torture and I just wanted it to stop. I felt filthy and disgusting.
I backed our car into a cement divider thing, I scraped up the driver’s side of the bumper. It wasn’t bad, but I should have known better. I couldn’t tell Malcolm because I knew that that was the last straw that would make him leave me.
October turned to November and the nights got longer and my mind got darker. I began to experience short flashes of self destruction, they were like quick movies in my head that weren’t me. Things like how I could drive my car full speed into the traffic light pole. How I could walk into the rushing river and be swept away to drown. How the knife I was using to cut a block of cheese could just as easily slit my wrist. At night I would wonder about my funeral, how Malcolm would react when he woke up beside my cold dead body… I wasn’t doing too good.
November turned to December. Despite telling Malcolm bits and pieces of what was going on, I knew that I was alone. I was a failure. My in laws didn’t like me, my family thought I was distant and a huge disappointment, my marriage was a sham, and I was going to die. I could feel the cancer killing me. The meds were not working, they were making the cells mutate faster.
I went in for my 3 month biopsy, and Dr. M2 asked me how things were going. I started to cry. She decided that it was time to stop the medroxyprogesterone and refer me to another gynocologic oncologist. We did my 3 month biopsy and it wasn’t easy. I was awake for it and I have had this kind of biopsy before and they never were so uncomfortable. It felt like the doctor was scraping the bottom of my lungs! She had to try three times to get enough tissue for the pathology tests.
I expected my mind to immediately return to normal once I stopped the pills, but it didn’t. I felt awkward, I felt like I didn’t belong. I felt unwelcome. Christmas Eve I had presents to drop of at Aunt Nancy & Jim’s place, but I couldn’t even call or text them myself to let them know I was coming, I had to get Malcolm to do it, and then when I got there I couldn’t leave fast enough because I knew I was imposing.
At Christmas with my family I was holding my 4 month old grand nephew and he started to cry. I have never shied away from a crying baby. I can console babies and I love cuddles. But all of a sudden my brain said “nope. Not my kid. I’m not doing it” and I handed him over to his mom.
I could feel the cancer growing every day. I was supposed to get the pathology results after 2 weeks, but two weeks came and went. I didn’t have the number for the new doctor, Dr M2 was on maternity leave and she was moving from her clinic to the hospital, and another doctor was covering for her. After three weeks I tracked down a number for the new hospital based practice and I called them. They didn’t have my file but they’d contact Dr. C2 who was the gynecologic oncologist who was taking my case, and I’d get a call in a day or two. After 4 days without receiving a call, I called them back. They still hadn’t found my file, but the secretary was going to personally speak with Dr. C2 on my behalf.
Mentally, I was starting to have good days, I was starting to feel a bit more like myself, I stopped having the flashes and thoughts of my own demise. But the worry remained. I knew that at the best I was headed for a hysterectomy. In one of the small support groups I had found, one woman had been diagnosed around the same time as me and treatment hadn’t worked for her and she had to have a hysterectomy asap. She left the group.
Dr C2’s office called me and the secretary informed me that they had not found my file, and didn’t know what had happened to it, but Dr C2 wanted to help me. She asked me a bunch of questions and said she would contact me within a week to set up an appointment with Dr C2. It was a week later (and a month since my biopsy) when Dr. C2 personally called me back. She asked if it was okay to discuss the results over the phone so that we didn’t waste more time with setting appointments. I said sure.
My heart was pounding in my ears as Dr. C2 said that there was no sign of hyperplasia, no sign of atypia, the cells were normal. I was speechless. She then continued saying that this is good and we need to stay on top of it and make a plan for how to keep my body from becoming to estrogen dominant again. I could go on the pill, I could get an IUD, I could get pregnant, if I wanted to I could have a hysterectomy. I suddenly had options and all of them scared me. We had to make a decision quickly and Dr C2 was going to refer me to another doctor because the cancer threat was no longer present.
A week later Dr C2 called me again to let me know that Dr. M2 was coming back from her maternity leave of Feb 15 and would be taking on my case again. I flip flopped on what to do. I was scared of trying again and it ending in more heartbreak, another urn, and another tattoo of two too-tiny feet. I was scared of not trying again and always living with the regret. I was scared of hormones and how they will affect my brain now that the world was finally starting to have colour in it again. I talked through my fears with my amazing husband who has never stopped loving me. I talked with a few other people as well, and in the end the choice was mine to make as it is my body and my mind that are at risk.
Malcolm and I met with Dr M2. We discussed all of our options, we aired out all of our fears and learned about the risks moving forward. We decided on a plan that we are all comfortable with.
A plan that I am not entirely ready to share with the world yet.