Cont'd from Part 1
December 6, 2005: It's 2:00 am and I've been sleeping off and on for the past several hours. I hear the door open downstairs, and Jeff doing his nightly routine -- checking doors are locked, setting up the coffee pot and getting ready for bed. I know in my heart I can't go any longer without telling him.
He crawls into bed and kisses my head.
"I got the call, honey. I have the gene."
Jeff just grabs me and we lie there, silent for a long time. Anything we have to say to each other is said without words. It's like we're on our way up the first hill of a roller coaster -- but we're not wearing seat belts.
The next days are so surreal. While life went as usual, I felt like I was walking around carrying a secret. I would flop between being fine with it all and having a breakdown. I kept reminding myself of the words I told my sister a couple of years before, "it's not a diagnosis." But when you hear that you're carrying a gene that gives you such a high risk of cancer, it sure as hell feels like one.
I couldn't wait for Jeff to get his two weeks off around the holidays so we could spend some time together, as a family. I should have been more clear about those wishes because on December 15th, ten days after our world changed, Jeff walked in the door from work and told me he had just been laid off.
It was like someone punched me in the stomach.
So here we were, with an almost three month old and a 19-month old, no job, health insurance coming to an end and relatives coming for Christmas. I was feeling like I had no idea what was going on in my body -- still recovering from having an eleven pound baby weeks before. I met with the genetic counselor again and she advised me to stop breast feeding in order to have any needed tests done. What?? Really?? I would've never thought anyone would suggest that. But they couldn't get any accurate results without it. I went a few more weeks, just to get Brady to three months, and followed her plan.
When January arrived, I kicked it into high gear. I joined a research group at the hospital who would follow me through testing -- alternating a mammogram and MRI every six months, along with an ultrasound and blood work to see if there was any signs of ovarian cancer. I found a support group, through my sister, that I became very actively involved with. If you're even thinking of being tested, FacingOurRisk.org is the place you need to go.
The people at the research group told me I would have to wait until June to get a mammogram. They try to keep their patients to the beginning and middle of the year for testing. While that is understandable for logistical reasons, ARE YOU KIDDING ME? There was no way I was waiting that long to find out if anything was going on inside me. I had been pregnant and breastfeeding for the past two and a half years and had never even had a mammogram. Now I was 34 with the knowledge I was carrying this genetic mutation, I was going to get my testing, with or without them.
I met with an OB/Gyn Oncologist, we'll call him Dr. L, who agreed with my plan.
"Hmmm, looks like there's swelling in one of your breasts."
"What does that mean??"
"It means that insurance would have to pay for an MRI and no one could argue the need."
Ah! I like that. A doctor who knows his way around the system.
February 22, 2006: I get a message on the machine from Dr. L's office. "Please call us back immediately."
I'm in my bedroom on the phone, pacing back and forth, waiting for Dr. L to come to the phone. I wouldn't say that these are exact words, but I'll just say they were very close to this. (in case my memory has faded three years and three kids later).
Dr. L: So we found something.
Dr. L: it's about ten millimeters.
Me: (thinking) Damn, I should have paid better attention while they taught the metric system.
Dr. L: I have the name of three breast surgeons for you so you can get in ASAP to have a biopsy.
Me: Just give me the name of the one you'd send your wife to.
The next day, Jeff and I were headed to the hospital to meet with the breast surgeon. What you don't know is that I started to come around to the idea of prophylactic surgery, just like my sister, and had already scheduled a consultation with a plastic surgeon for the next week.
The breast surgeon walked in and I thought, there is no way this woman is touching me. She was a little crazy, seemed scattered and was the opposite of what I expected in someone who saves lives by cutting people open.
Within twenty minutes, I knew there was no one else I would allow to touch me. She was fantastic. She tried to find the lump but had no luck. She told me a surgical biopsy was my only option. I knew in my heart that if I had cancer, I had to go through with the double mastectomy. The risk was insanely high that I would get it again once I had it the first time. Plus, going under and doing this biopsy and then going back again to have surgery -- that seemed like one extra unnececessary surgery. And if I didn't have cancer, it felt like just a matter of time before I would be diagnosed anyway so why not get it before it got me?
We decided during that appointment that I would go ahead and have a double mastectomy. It was scheduled with her and the plastic surgeon for March 16. I hadn't even yet met the plastic surgeon but knew he was THE doctor when it came to reconstruction, and had met several women who had already been under his care. Plus, I still had my consultation scheduled with him next week. We would just change the appointment to be less of an interview and more of a plan-making one.
I could write a whole post just on the next three weeks. I don't think Jeff and I stopped holding hands, hugging and kissing for the entire 21 days. We both would just start crying at random times -- hearing a song on the radio, looking at the boys or even with no trigger at all -- just because. The uncertainty of the time was too much for us, and we couldn't tell each other 'I love you' enough. Even now, when I hear certain songs or see people gearing up for St. Patrick's Day, I am brought back to those three weeks and it's like I am reliving them.
A few days before my scheduled surgery, two of my girlfriends arrived for a night out. Everyone knows Christine -- who came to Taiwan with me to visit Lucy, Pam -- who became my sister in law after being my close friend for years, and Karen -- who has been my closest friend since 7th grade. But Tara and Tiff, who my kids call Clairee and Weeza (see Steel Magnolias), are the go-to gals when you need to grab life by the horns and slap it around while laughing at it. And that we did! They arrived for dinner that night with a cake in hand -- a cake, in the shape of a woman's breasts. I don't think I have ever laughed as hard as I did that night. I knew, while eating a cake that was supposed to represent my own chest, that I had found the dynamic duo who would spend the day with Jeff while I was in surgery. The pair who would let him talk as much as possible but also entertain him and distract him from the severity of the situation.
(Reading that paragraph back, I can assume some will wonder about my mental state but I am a huge believer that there's something funny in almost every situation and my friends know that too.)
March 16, 2006: It's before dawn when Jeff and I drive to the hospital. The only thing I remember about that morning is saying goodbye to him. It struck me that, while we've been focusing on the cancer possibly killing me, I hadn't really thought about not waking up from seven hours of surgery. I remember telling Jeff that no matter what happened to me that day, that he needed to know that I was totally in love with him and had an enormously happy life. I can't even explain the feeling of kissing the love of your life goodbye, wondering whether you'll ever see him again.
I met with my surgeons and then lied down, letting the anesthesia take over. Here we go...
To be continued...