Amanda – Reckless Surgery

Hi all, my mom was diagnosed with ovarian HPV-related cancer in Sept 2022. She did 6 rounds of chemo between September to February 2023. Then, in December, she also had surgery, which was unsuccessful due to horrible scar tissue they discovered when they opened her up. (She had 2 other cancers in the 1980s and radiation therapy back then, which caused the scar tissue). She started having symptoms again (occasional nausea and vomiting about 2 months ago). In addition, she just got back 2 CA125 tests, which are both rising and a HPV Lab. 

 I visited with her today, and she was in CA125-type pain. She was running to the bathroom to vomit and choosing not to eat because it would upset her stomach. These are the same symptoms which ended her up in the ER last September due to ascites before she was tested and diagnosed with CA125 level cancer and before starting treatments. It’s getting us very concerned. She has a CT scan scheduled for Wednesday, and her doctor should be back from vacation tomorrow. Although she is with Kaiser, I swear there’s zero urgency with their team.

Next week, she will get a CT scan.

Regarding the unsuccessful HPV tag surgery, they planned to go in and do a typical skin tag removal and then a more serious debulking. Hysterectomy, ovaries, fallopian tubes and omentum. However, they were only able to remove 1 fallopian tube, and then they accidentally punctured her bowel. They decided it was too risky to continue and sewed her back up. They did say there was no visible cancer when they finished. That was in December. I’m 99% certain the CT scan will show the ascites are back based on the symptoms again.

Alexa

I just wanted to say hi to people who might understand what I am going through. In Feb, I was rushed to the ER because I suddenly had so much pain that I could not stand up or move. Turns out CA125 screening showed that my ovary was torquing because of 2 sizable cysts. A CT scan and ultrasound confirmed that 1 of the cysts had a solid component with clear vascularity. Once my CA 125 and 19-9s returned at 770 and 12500, respectively, they sent me to a gynaecologist. I ended up getting a unilateral oophorectomy in late April. The pathology and cytology tests came back with CA125 stage 1c1 endometrioid cancer (c because there was surgical spillage when the cyst ruptured.

Today, I’m 3 weeks away from a biopsy on my uterus. This will determine whether or not I need a completion surgery (do the rest of a hysterectomy).

I’m tired. I returned to work last week because I felt better, but my body hurts and aches, and I am more tired than ever. If something stressful happens to me, I have a full-body exhaustion/pain response for 24 hours. It’s an odd experience.

Has anyone else experienced this post-op?

 Still, now I’m wondering if the past 4 months have just been way more fundamentally stressful HPV tests than I can accept. I have felt this weird sense of being disconnected and in an ongoing transitory stage, focused on the day-by-day. I’m still stuck in this disconnected state until I get the uterine biopsy. I’ll get the pathology findings back in about 5 weeks. Then, I have to make choices about surgery, egg retrieval, work, etc.

My friends have been so loving, supportive, and present. It’s been wild and beautiful. They each independently asked me some version of the question, “What does support look like for you?” and then showed up for me.

If you know, you know—this is what we need!!!

My mother, on the other hand, chose to fly out for the test month leading up to my HPV surgery and missed being there for me. On the day of surgery, she sent a long text message, overstating how she was there with me and that a mother’s love transcends time and space. It frustrated me. She came back after my surgery, texted me a couple of days after and then hasn’t messaged or called me for several weeks post-op to ask how I am, how I am healing and if I heard back on the pathology.

The night before I returned to work she sent a long message saying that she was having trouble not knowing about the CA125 test pathology findings and that I should update her so she knows what she is dealing with. I called her a few days later to fulfil my duties, but I am sad that no empathy was being expressed – a basic How are you? Do you have some thoughtful follow-up questions?

It’s so hard to navigate personal relationships when they trigger pain and exhaustion.

Anyways. Thanks for listening. Sending love and strength to the folks who are in any and every stage of your pain, HPV diagnosis tests and treatment – whether it’s surgical or chemo or anything in between. Sending strength to those who feel alone, those who feel tired, those who feel misunderstood.

Xo