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Bilateral Mastectomy Pre-op Appointment
TRAM Flap Breast Reconstruction in 3-D
If you're brave, watch this TRAM Flap procedure
The countdown begins. One week to go!
"You're having a TRAM Flap? I watched one of those surgeries the other day. It's a really cool procedure," a young man in blue scrubs said like he was talking about some new shoot-'em-up action film.
"Yeah, uh, not when you're the one they're doing it to," I told this UCSF medical guy as he took my vitals prior to one of my pre-op appointments today. I added, "I watched it, too." He looked confused. "I saw the procedure on YouTube," I added as I stood on the massive doctor's-office scale that always weighs me at least four pounds heavier than every other scale (and yes, I've actually asked them to zero it before weighing me).
After telling him about the graphic nature of the YouTube video (watch it here if you have the guts -- no pun intended), this young guy must have believed I was mentally prepared for these doctors to butcher parts of my body. More likely, he was an inexperienced idiot because suddenly he thought we were ol' chums shootin' the breeze about my impending surgery.
All I could think was, shut up. Shut up. Shut up! What I'm about to do isn't "cool." It's necessary and barbaric. And with my luck, the day after I have my tits cut off, some genetic jock will announce he's developed a shot to be given in the left buttocks that can alter my mutated BRCA gene and prevent the same breast cancer from taking hold of my body just as it has already killed or tortured too many women in my family.
Good thing this kid didn't try to have this conversation with me a few months ago when I would begin sobbing at the very mention of my situation. I might have ruined his morning.
After he was finished measuring my now-raised blood pressure, we began walking down the hall towards the exam rooms. Before I got very far, he stopped me and said, "Actually, we're going down this hallway," and directed me toward a closed door at the end of another short, darkened hallway.
As he opened the door and led me down the quiet corridor and past various offices, my stomach felt sick. "We're in here? Where they do the genetic counseling?"
"Yeah, this is the place." This guy was too fucking cheerful to be working with people like me who have the BRCA genetic mutation, or worse, with all the people who come to this UCSF Cancer Center to deal with the most catastrophic health crisis they've ever had to battle.
"I hate this hallway," I said. We walked passed a few offices before he showed me the room in which I would have my appointment.
The Torture Chamber
Room with a Shitty View
"This is Beth Crawford's office," I said, pausing in the doorway, one hand grasping hold of the door jam like I was securing my safety during an earthquake.
"Yes. It is."
"Great," I faked. "This is where this all began."
This pisher (yiddish for young, inexperienced shmuck. Oh, wait, there's more yiddish. Shmuck. Do I really need to explain that one? Well, maybe not a shmuck exactly, but childish.)... anyway, this pisher finally gets it. I think it sinks in that I'm not exactly relaxed.
"Oh, uh, if you feel more comfortable, I might be able to move you to..."
"No, that's okay." No, why not leave me in the office where I found out last August I have the BRCA genetic mutation passed down to me from my father's side. The headache I'd battled from the moment I opened my eyes this morning began throbbing and my stomach felt sour.
The pisher left me and closed the door. The pre-op nurse would arrive any minute. That gave me just enough time to think. Oh joy. I looked around the room and it mostly looked the same as the first time. Three standard chairs and the black ergonomic office chair in front of a desk that displayed no evidence of a personal touch. There were no photos of children or loved ones, no special drawings, no photos from memorable trips that would relieve Beth's own stress level after telling someone they have the gene mutation and are about to enter hell.
I sat in the same chair as last time. Next to the window looking out over Divisadero Street. I looked around the room.
Next to Beth's desk sat stacks of the genetic testing kits. "BRCA Analysis: Discover the Risks - Understand the Options" was printed on the box that would sometime soon hold the blood test of some other genetic mutation victim.
Sitting on the windowsill beside me were several cancer-related resource pamphlets: "Cancer Resource Center: Supporting wellness and the healing process," "Breast Cancer Prevention Program," "Donating Tissue for Medical Research." Next to the pamphlets was a display of business cards: internal medicine doctors, genetic counselors, and a card listing ovarian cancer symptoms. There was a box of sterile gloves against the wall, but closer to the cards and pamphlets was a small hospital-room-sized box of scratchy tissues: a poor choice for people like me.
Would You Be Brave Enough?
Would you want to know if you had the BRCA gene mutation?
"Now, will you take the damn test?"
For years, my mom had been bugging me to be genetically tested to see if I carried the BRCA1 and/or BRCA2 genetic mutation. It is this gene that helps prevent certain cancer tumors from forming (when there isn't a mutation, that is). I didn't want to know. I'm sure that sounds ridiculous, but I didn't want to live my life in fear of something that may never happen. When my sister was diagnosed with breast cancer a second time about a year ago, I knew it was stupid not to get tested.
When Beth, my genetic counselor, said she was going away for a month and made room in her schedule to have me go into San Francisco because they never tell you results over the phone, I had too many scenarios running through my head up until the moment she told me.
"It's good she wants to see me, right?" I asked my mom. She drove us down into the city that day. "She wants to offer some relief before she leaves on her big trip, right?"
"I don't know, Joey. Let's just wait and see."
"It could be good news. After all, you tested negative, so I have a fifty-fifty chance." I told her and tried to convince myself. I couldn't stop asking questions.
Once inside Beth's office, she didn't waste time to hit me with the news. I carried the gene mutation. Everyone's expression showed concern and felt like a death sentence.
"I do?" That's as best I could hold it together before crying. "But my kids. What about my kids?" Too many things flashed through my mind and they were all bad. I saw visions of my sister's horrible breast cancer experience. What if I get it and I die leaving my kids to experience too much sorrow in their young lives and their childhoods are ripped away. What if my kids carry this fucking gene mutation. My daughter. Will she be able to have children? Will she have to have her ovaries taken out and breasts cut off before she has a chance to meet someone and fall in love? Will she be able to find love if she is missing these parts that help define her as a woman and the mother of future generations? Will my son get prostate or other cancers? Will he carry this gene to his children and pass along this pain of knowledge and experience?
It was all too much and the only words I could say through my tears and horrible thoughts were, "But my kids..."
My mom and husband held my hands. My dad sat quietly against the wall. I know he feels guilty for passing this shit down to his daughters, but I felt angry and sad and confused and lost and terrified.
After hearing my horrible odds of getting ovarian and breast cancers because of this gene, Beth and another nurse began explaining the series of appointments and tests and screenings and surgeries I had in store for my future. I had to choose whether to cut out the parts of my body that are most vulnerable or continue screening and hope for the best.
And again, "But what about my kids? How soon can you test them?"
"Well, we can't test them until they turn 18 and decide for themselves," I was told.
"What? That's crap! You give me this shitty news and then you tell me I can't test my kids?" Now I understand what my mom has been going through all these years she's begged me to take the test. Sorry, mom. Truly, I am.
"But what if they have it and they may get cancer?" I'd had my kids, so I didn't care if they take out my ovaries and remove my tits, but what about my kids? I was panicking.
"These cancers are not found in young children and by the time they grow up, we'll likely have a better solution or a cure." Still, I found out later from a friend, that's the same thing they told her several years ago and now her kids are in college.
And that's when this hell began. That's when I began scheduling blood tests, MRIs and extra mammograms (I'd already been having mammograms since I turned 30). That's when I began scheduling surgeries. I've already had my ovaries and tubes removed. Now, off come the breasts.
More BRCA Gene Information
- Genetic Testing for BRCA1 and BRCA2 - National Cancer Institute
A fact sheet about the BRCA1 and BRCA2 genes, what to do if a person tests positive for one of these alterations, and consequences of genetic testing. National Cancer Institute Fact Sheet 3.62
- UCSF Medical Center | Cancer Risk Program
- Men With BRCA Gene Mutations Unaware of Cancer Risks - US News and World Report
They need to be more aware of the threats to themselves and relatives, study says
- Imaginis - Who Should be Tested for the BRCA Gene Mutations?
Award-winning, breast cancer information and news resource. Imaginis also covers related breast cancer health topics such as hormone replacement therapy (HRT), heart disease, multiple sclerosis, osteoporosis, cervical cancer, and ovarian cancer, as w
Read these blogs for more of my story
- Ovaries, Tubes and Tits... Oh, My!
Jumping off the Golden Gate Bridge, suicide and genetic mutations resulting in removal of body parts.
- Ovaries, Tubes and Tits... Oh, My! (Part 2)
Deciding to have a bilateral mastectomy and TRAM Flap reconstruction.
- Tics, Towels and Tourette's
Living with all the twitches of Tourette's Syndrome when you are stressed and tired.