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. With each post, I explore a new topic and dissect the role of medical trauma in daily life and relationships.
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Was It Worth It?
Medical Trauma Journal
Monday 11/1/21
Navigating post-op life comes with its own set of "fun" challenges. Like an irritating guest, these drains hang around, making sure I'm painfully aware of their presence.
I got a double mastectomy or, more technically appropriate, a bilateral mastectomy. A bilateral mastectomy is an operation where doctors remove both of a person's breasts. They might do this surgery if someone has breast cancer in both breasts or wants to reduce their risk of getting breast cancer in the future. In my case, I definitely had a cancer lump and a bunch of other spots of precancerous cells and microscopic cancerous cells sprinkled about like glowing glitter in my breasts on the MRI.
During the surgery, the surgeon took out ALL of the breast tissue, including any cancer. In my case, because there was cancer glitter by the nipple, the pair of them, too. You don’t realize how much of your body is “breast tissue” until they have to take every last cell of it out. But they have to scoop and scrape it all out, making sure to take just the right amount of your body.
After a bilateral mastectomy, people often have surgical drains in place to remove excess fluid that can build up in the area where the breasts were removed. These surgical drains are small tubes inside the body that are connected to a bulb or bag outside the body. I need to underline that four tubes are hanging out of me draining fluid that collects in these dangling balls.
Fucking. Yuck.
Anyway, here's how they work:
I have four surgical drains placed inside of me. Two tubes go into each side of my body right where my bra line would be. From there, one goes around the top and the bottom of where each breast used to be. Two of them are right on my ribs, and it hurts. The tubes are stitched to the skin to keep them in place. It’s pinchy and annoying when I move.
The ends of the tubes are attached to bulbs, like hand-sized balls, that collect the fluid that is coming out of my body where the surgery was done. The spaghetti noodle drains squiggle out of my body and the ends are attached to my bra. This prevents me from the pain of the bulbs dropping and gravity doing its thing on the stitches.
Throughout the day, any fluid that builds up at the surgical site drains into the bulb through the tube. This helps prevent fluid from accumulating inside the body and causing swelling and infection. Yay!
But, twice a day, I open the bulb and squeeze the fluid into a cup. Then, I measure and record the amount of fluid removed. It’s disgusting. Did you know that your insides have a smell?
I do not like this. The drains are uncomfortable to begin with. But to empty the drains, I first have to unhook the bulb from my bra and make sure it has a safe place to be that doesn’t pull on my stitches. Then, I have to clean the tubes with an alcohol wipe. Any slips here pull the stitches. Then I open the bulb and squeeze out any fluid into a measuring cup. I squeeze the bulb and reattach the top, leaving some suction to help draw out any excess fluid. Finally, I can reattach the bulb to my bra and hope everything stays put for the time being.
By measuring and keeping track of the fluid output, my doctors can make sure I’m healing correctly and that there are no complications. My mom keeps a detailed tracking sheet for the doctors. I can't move around much to help the process along, so I require a lot of help, which is really hard. The only feedback I have these days is pain so it’s tough to get things right.
The drains can be removed once the amount of fluid my body makes decreases to a certain level. This typically happens a few days to a week or more after surgery. I'm hoping for the soonest part of the range and mentally preparing for the longer end.
Surgical drains restrict most activities during the first part of recovery, but they are supposed to prevent complications and help healing after a double mastectomy. The healthcare providers gave us a lot of instructions on drain care, including emptying and cleaning them to ensure a smooth recovery process. They made Matt take a quiz before I could leave the hospital.
Tuesday 11/2/21
The drive to Dr. Tadros felt endless, a mixture of hope and the all-too-familiar dread. But this time, the news waiting at the end of that hour-and-a-half drive was finally good.
"No cancer in the pathology report," she said, and I was so ready to embrace this rare moment of victory—the chemo, it worked, even if I could barely stand it!
Yet, the expected surge of relief didn't come. Instead, there was a numbness. Really there was just a blankness. I received this piece of good news just as perfectly as I had received all of the bad news. And for the first time, I thought, “Shit. I might have PTSD.”
I realized then that the scars weren't just going to be on my body. I guess I’ll deal with that later.
I do have to acknowledge a win when it’s undeniable.
So, no cancer! Yay!
And it was ok to reduce my chemo!
And it was worth it to do the bilateral mastectomy!
I can breathe a little better.
Another bit of good news happened today, too…2 drains are out!
I had a double appointment with the breast surgeon and the plastic surgeon. My plastic surgeon was able to remove two of the drains. One on each side. This should feel much better now.
It’s a good thing I had all of that positivity swirling around because to get the drains out was a bit of a shock. They take out a brand new pair of very sharp scissors and then go digging around in the wound to cut the stitches that are holding them in my skin. Then once the pinching, poking, and cutting of my skin is done, they just pull it out.
Yeah.
One hand on my shoulder, the other on the tube, she said “Take a deep breath.” And as I did, the nurse yanked feet of tubing out of my body. I felt every bit of it. I was glad that happened but also, it seemed crude.
There wasn’t a better way than that? Just yank it out?
Modern medicine is weird.
Anyway, Dr. Tadros and Dr. Dayan voted no on radiation. So far, so good. Fingers crossed for a unanimous vote.
Wednesday 11/3/21
Dr. Wang, the cancer quarterback, voted no to radiation.
Radiation’s safely off the table. Holy shit, am I done with active treatment?
Thursday 11/4/21
There's a spark in me today, more than just physical energy—it's like my willpower's been on charge overnight.
Today's energy came with a side of rebellion—not from me, but from my drain. I was feeling strong enough for a solo shower, so I gave Matt the green light to take some time for himself. But then, chaos unfolded.
The shower was fine, but when I got out, I felt a squiggle in my side. I was cradling the drain bulb in my hand, and the tube slithered out of my body like a magician's trick gone wrong. Bloody betrayal was splattered all over the sink. I stood there, gaping, as my jaw and the bulb took a synchronized dive. I was looking at my whole drain, the feet of tubing that are supposed to be on the inside of my body, sitting in my bathroom sink.
The panic button was mashed. I called Matt—homecoming needed, stat.
In the aftermath, I'm torn between laughing at the absurdity and marveling at the body's ability to survive all of this nonsense.
The drain, my most annoying companion, took its final bow in the most dramatic fashion possible. Let’s hope that’s fine cause it’s not going back in!
The left one is still where it’s supposed to be. For now, at least.