Did you miss Part 1? Check it out here to catch yourself up before we continue onward with Part 2 of this boob-tastic drama.
So where were we? Oh yes…everything was settled. I had my breast surgeon, plastic surgeon, and surgery date all set. The only thing left to do was wait.
Not quite. Let’s pick it back up from where things were last month.
January 4 – I was in the driveway, peacefully digging my car out after a foot of snowfall when I heard the little ding of Facebook Messenger on my phone. I saw a message from another BRCA sister I’d connected with through a FB group, who was also using Dr. Levine. On his suggestion, she’d recently met with the same breast surgeon I saw a couple of weeks earlier. But then, a day after her appointment she got a phone call from the doctor’s office informing her that the doctor was cancelling all of her upcoming surgeries. Ummmm….what?! This had to be some sort of mistake. I felt my skin get hot and my heart start to race as I read her messages. I stepped in from the cold, my breathing fast and shallow, and I called the doctor. The office administrator I spoke with confirmed it. Yep. “She is taking a step back from the clinical side of things”. That’s what the voice on the phone told me. My surgery had been cancelled. WHAT. THE. FUCK. I was fuming. How could she have sat with me 2 weeks before, with that reassuring smile, talk about incision placement, healing, and schedule my surgery and then **poof** cancel it with no explanation.
(Note: To anyone thinking that I am an awful, selfish person for being so mad about this, because you assume something terrible must have happened to the doctor…you are not alone. Many people in the BRCA FB group had the same reaction. But I assure you, I’ve FB stalked the doctor. She’s alive, happy and smiling…and recently enjoyed a fun night out with her husband at the opera…oh and she has new hairstylist.)
I vented to my spouse who had been quietly trying to get some work done before I burst into the room like a cat set on fire. Then, once a bit calmer (but just a bit) I emailed the office manager from my plastic surgeon’s office. The gist of my email: GAHHHH!!! NOW WHAT?!?!. To my surprise about an hour later Dr. Levine called me back himself, and reaffirmed all the things I felt about him in that first meeting. (This is the person I want to be working with.) He was so apologetic, explaining that he was as shocked and surprised by the news about his colleague as I was, and he encouraged me to put this experience behind me and to move on to another plan. He told me about two other surgeons he could work with for my surgery and explained another option – having my mastectomy first and then doing reconstruction a week or two later as a separate surgery.
Mid January – I spent a little time researching and considering options. The idea of separating the mastectomy and reconstruction into 2 separate surgeries left me with a hollow feeling in the pit of my stomach. Going under anesthesia is the scariest part of surgery for me, and splitting it into 2 surgeries means having to go under an extra time. Also, minimizing recovery time is a top priority for me (given that this surgery already has a lonnnnng recovery time), and 2 surgeries means at least an extra week of recovery time. But still…there would be an upside to that option. Specifically, I could probably return to the wonderful breast surgeon I saw initially for my mastectomy. It definitely gave me something to consider.
Meanwhile, I did some research into the two other surgeons Dr. Levine recommended — one in New Jersey and one in Connecticut. Through the wonderful world of the internet (BRCA Sisterhood on Facebook and the FORCE Surgeon Referral Tool) I was able to connect with patients who have worked with both doctors. I heard largely positive things about both of them, thankfully, which helped soothe my feeling of being burned by my previous doc. But the enthusiasm with which the Connecticut doctor’s patients raved about her stuck with me. So I called and set up an appointment.
January 19 – Three days following my ovary surgery, still a little sore and grumpy, my dad drove me the 1.5 hours up to Connecticut to meet with the surgeon. Now that I was meeting with my 3rd breast surgeon, I was pretty used to the drill and knew what I could expect to hear. The doctor was smart, thoughtful, and incredibly kind. She talked about her history working with Dr. Levine prior to her move to Connecticut and raved about his skill and talent (not that I’d doubted it for a minute). She had her calendar out with possible dates highlighted. Although I was still wary from my previous experience, I went ahead and scheduled the surgery for April 18th.
January 22 – Oh, I did I forget to mention that mixed in with all of these appointments in early January was a 6 month follow up MRI? Oh yeah. That happened. And (of course) it showed some areas of abnormality. After about 24 hours petrified that I had cancer, the radiologist re-reviewed my images alongside my baseline MRI from 6 months ago (which they should have done from the start). With this new analysis the recommendation shifted from: PANIC! And come get a biopsy ASAP, to: Lets do an ultrasound and mammogram sometime soon to get another look.
I went for the mammo and ultrasound on 1/22 and thankfully all looked good. No biopsy needed for now (yay!), just (maybe) one for follow up MRI before my mastectomy.
January 23 – Following my appointment with the doctor in Connecticut, I set up a phone call with Dr. Levine to talk through my last lingering anxieties about working with the new doctor. Specifically, was he sure he was comfortable operating with her again (since it had been a while since they worked together)…and was he really happy about going up to Connecticut to do the surgery? Within a few minutes my mind was put at ease. He was enthusiastic in reassuring me that he completely trusts this doctor’s surgical skill and is happy to work with her again. He also described his comfort level with this hospital and his history working their when he first relocated to the area from New Orleans. He told me that he had no doubts about going forward with this plan. Ok. That’s all I needed to hear. I marked April 18th on my calendar.
January 30 – I received a phone call from my plastic surgeon’s office with a “please call me back” message. I knew that couldn’t be good. I returned the call when I had a chance at work and the office manager told me, oh so apologetically…that they had to reschedule my surgery. Again. April 18th had been double booked. Of course because scheduling this surgery requires coordinating 2 doctors schedules (one who is travelling out of state to do the surgery) and booking an operating room for basically an entire day, my options to reschedule were limited. April 4th or May 16th.
I was so disappointed. Late April would have been the perfect time that would allow for minimal disruption at work while still allowing me to (hopefully) heal in time to enjoy half of my summer. Opting for April 4th would mean feeling like I am abandoning clients at work, making life harder for my co-workers, and missing a wedding we wanted to go to. Choosing May 18th would mean delaying the start of my HRT by another 1.5 months, and spending at least 2/3 of summer recovering from surgery.
I agonized about the choice all week. Lost significant sleep over it. Then ultimately, I went to a supervisor at work, laid out the dilemma for her, and waited for her feedback. Somewhere inside I knew that all I really wanted was the reassurance that I could do the earlier date and everything would be ok. That my clients and co-workers would be ok. That no one would be pissed. And, of course, she gave me that reassurance. Later that day I emailed the doctors office and told them I’ll take April 4th.
I half expected them to get back to me and tell me they’d already offered it someone else. But no. The office manager responded right away that the date was mine.
Today – So here I am. Yesterday marked 2 months until my scheduled surgery. I have to get an MR Angiogram next week to look at my blood vessels, and as long as that all looks good it is officially all systems go. (Until someone needs to move my surgery again or another doctor quits on me or something). Now, for real (I hope), all that is left to do is wait. And figure out short term disability for work. And gather all the post-surgery supplies I need. And wrap my head around the fact that this is actually happening. I am having a prophylactic double mastectomy.