How to Survive a Menty B breaks down medical trauma and illness-induced PTSD with me, a therapist with both PTSD and a Ph.D.
This is my survival guide, my survival story, and my survivor legacy.
How to Survive a Menty B is a library for people navigating the upheaval of medical trauma and PTSD. Each week, I explore a new topic and dissect the role of medical trauma in daily life and relationships.
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Chemo Finito
Medical Trauma Journal
Friday 9/24/2021
Last chemo. Chemo 8.
I slept like shit last night and all week. I have multiple hot flashes per hour, giving me full-body sweats and drenching my clothes. My hands are pruney all day from sweating. I feel beat to hell, but whatever, I made it.
Everything was running on schedule, so my team celebrated by giving me a certificate and sending me to my last round. I kept the dosage at 90% strength again and ensured I was covered on drugs. I also got IV hydration today with the drugs. I will return and get IV hydration on Monday when I go for a mammogram and MRI.
I know I still have to feel the effects of another blast of Taxol, but it was nice to be happy.
I was looking forward to something in the future. Nothing specific, just knowing I will do something fun again. A concert. A road trip. Something.
I already have vague bone pain and severe heartburn, and acid reflux.
Even with everything I’m going through, all these terrible severe side effects, I kept thinking that maybe I got off too easy, too fast.
We stopped for ice cream, and it wasn’t long until I felt like I started a fire in my esophagus.
Saturday 9/25/2021
Day after the last chemo. I got terrible acid reflux from my chest into my jaw and practically into my eyeballs. It kept me up all night.
Dr. Wang, my oncologist, talked about the next steps yesterday, and now I will make the rounds with my surgeons and a radiation oncologist and then check back in with her. She also mentioned hormone therapy. I figured it wouldn't be worth it since it was so weakly positive in only one area. But she said since my Oncotype score was "so high" (65/100), I needed to do everything I could to prevent a recurrence. So ok then. I’ll do whatever she says.
Monday 9/27/2021
Bone pain. I made the 3-hour round trip for my mammogram, breast MRI and IV hydration.
Wednesday 9/29/2021
The doctor’s office called about my MRI. Unfortunately, the machine had a technical glitch, and I had to return and redo the MRI. A “technical glitch” does nothing to calm my fears.
I want someone to say I’m cancer-free, which we still can’t know after four interventions.
Sometimes I do wonder if it’d be easier if I just died. Spare everyone, myself, the system, from the strain. It’s an odd feeling to be fighting for my life while contemplating the benefits of my death.
Thursday 9/30/2021
Bone pain
Naps
Lots of good times with my dad
Great food day: French toast and Philippe’s and cookies.
Friday 10/1/2021
Now, there’s a mass in my right breast. My breast surgeon, Dr. Tadros, called on a Friday afternoon, which is never fun. She said there were findings in both the left and right breast. Even with suspicious results in the left breast, she didn’t anticipate it to be anything due to all the scar tissue and possible dead cancer.
She wants two spots in the right breast to be biopsied. Nothing was there before.
I feel like I can’t breathe.
Saturday 10/9/2021
It's been tough to write. After multiple MRIs, extra ultrasounds, and much confusion, I felt like I was on day one all over again, triggered and panicked. So, I would much prefer to skip this part.
Monday, 10/4, we saw the plastic surgeon. I liked him. He had a fantastic suit and some great shoes, so I felt he had a little personality which was essential to me. We made a plan for the bilateral mastectomy. He said it's better for matching the look and symmetry of my breasts and for healing evenly. He also said it would help me to avoid scanxiety since I wouldn’t have any breast tissue left, and I won’t have to do mammograms again. I explained that my most important goal is feeling comfortable in my body and not having any pain or movement restrictions. And very closely, but secondly, is my desire for an excellent cosmetic outcome. So at first, we will take out all the breast tissue and my nipples and then put in tissue expanders. Spoiler alert: I may need radiation too. Awesome.
The tissue expanders are like placeholder water balloons for a few months while I maybe get radiation and wait for some scar tissue to develop to make an excellent base for my new breasts. Right now, we are considering creating new breasts out of my own tissue. It’s a complicated process to perform amputations and recreate body parts. Getting cut in half and put back together will take up the next year of my life. I signed all the consent forms knowing I could change my mind to only taking one breast on the day of if I wanted.
I can't believe I went from sorting this out with a small lumpectomy to losing both breasts.
The next day, 10/5, I made the round trip to meet Dr. Tadros, my new breast surgeon. She also agreed with cutting off both breasts due to my response to this first scare.
If I have a recurrence, it will be to stage 4. But, having a bilateral mastectomy will take the possibility of a new primary breast cancer to practically nothing compared to now.
I don't think I would be ok if I amputated one, and then ten years from now, I have another primary cancer in my right breast.
I fucking hate this, and I don't want to do it again. It's a massive pain in the ass, a financial drain, and a time suck. I’m sick and in pain. Fuck doing this again.
I don't want to lose both my breasts. I really don't. But I tried. I did three surgeries to save the left one. I don't have as much patience with the right, I don't think.
I hate thinking about the scars and what I will look like. And I still may die anyway. No one knows anything.
I got diagnosed in March, and it's now October, and no one can tell me that I have no evidence of disease. So, I consented to Dr. Tadros doing the bilateral mastectomy, knowing I could always change my mind.
In the meantime, I still need to biopsy my right breast so we can know if we need to test lymph nodes on the right side. That will happen next week. Then I've got presurgical and covid tests before my surgery on 10/21.
It feels so, so soon, and it also seems like it's been coming for a while.
I'm terrified but also excited to do something to fix this.
I cried for hours and hours on Wednesday about everything. Having cancer, trying to do what I am supposed to do, facing step after step that doesn't produce much of an outcome. Three surgeries and a failed IVF cycle followed by the most brutal chemo regimen, only to end up with anxiety and a double mastectomy, with at least a year to complete reconstruction. I’m just fucking tired. Matt was great about it, though.
I can't sleep thanks to my chemo-induced menopause. I can sweat through anything. I wake up in a puddle, and everything I wear and anything within about 6 inches of my body is drenched. I soak my side of the bed, the center, back to my side, and then squeeze as close as I can to Matt's side before he wakes up, and I can take his warm, dry patch to ruin.
It's every day now. All night long. The fatigue is still overwhelming, a cloud I can never see through. I get out of breath and have no strength for the littlest things. And my bones ache all the way through.
If I had to go to chemo yesterday, I would have done it, but it would have been fucking hard. I am not recovered this time, and I don't know if it's the meds or an accumulation, but I’m feeling low. This is taking a toll on my mental health.
Same time next week?