January 6, 2016
As promised, the day after my phone call with the doctor who confirmed my biopsy results, my Nurse Advocate, Mary, called me from Clovis Community Hospital's Radin Center. The Radin Center is a comprehensive breast care center that coordinates and facilitates all the various appointments and treatments that one is suddenly faced with when diagnosed with breast cancer. (I find it a terrible misnomer, by the way, to say someone has tested positive for cancer. There's nothing positive about being told you have cancer!) Mary told me she could take my medical history over the phone, and that she could get it out to everyone on my team so that I wouldn't have to repeat the same background information to every person I would be seeing. She told me that it had been arranged for most of my team to meet me and discuss the findings and my treatment options the next day--Friday afternoon--if that was convenient for me. If I preferred, she said, I could go to each doctor's office individually, but part of the beauty of the Radin Center is that it's a team home base, so to speak, and all of them could come to me at once, rather than me having to make several pre-op appointments all over town. I can't imagine how much time that would have taken, not to mention time off of work it would have taken if I had had to schedule all of those doctor's appointments separately, and suddenly I was keenly aware that I needed to be sparing about any time off I'd be taking pre-surgery. Who knows how many days I'd need off post-surgery. Mary confided in me that she herself was a breast cancer survivor, and she knew how overwhelming it all must be, and how many questions I must have. She told me I could call her anytime with any questions or concerns. She even told me she could set me up with a social worker if I felt I needed it, or someone to go shopping with me to be fitted for post-mastectomy bras or prostheses after surgery, if that was the route my team were to decide upon. It was comforting to talk to Mary, and I was relieved to know that the next day I'd be able to actually start getting a course of action in place.
I called my sister Lisa that night and gave her the update. "I'm not worried about the outcome. I mean, I'm stressed about the surgery and all of the process, because of course doctors scare me. Needles scare me. I don't think I'm going to manage getting through all of this without having to confront either of those little phobias. But I'm not worried about the outcome. First of all," (and this had been something she and I have morbidly discussed over the years), "one of the things I have yet to do on my 'Life List' is make it to the oldest age in our immediate family thus far." Our father had died at the age of 46; Mom died at 52. My oldest brother only made it into his early 40s. I didn't think it was unreasonable to aspire to make it past 52; in fact I have plans to make it well beyond that. "Besides that," I told Lisa, "there's no way I'm not going to see Danielle graduate, or help plan my kids' weddings. And I haven't had grandkids yet!" Nope. No way I'm going to miss out on any of that. I was BORN to be a grandma someday. So, you know, worrying about not being around wasn't even an option for me.
As luck would have it, Doug's project at his work finished up, and he was due for some time off the same week I was entering into our new reality. Fortuitous timing. He didn't need to take any time off in order to be with me for all of the appointments and would be home to take care of me after the surgery. We started with the team meeting on Friday afternoon at the Radin Center. Prior to meeting with me, all of the team met together to discuss the test results and view the ultrasound pictures, and then each one of them would come in and talk to us individually about his or her role in my treatment. Dr. Gumina was my breast surgeon; she talked with us first about what a full simple mastectomy would mean in terms of surgery. She'd be working in tandem with Dr. Zuniga, my plastic surgeon during the initial surgery. During the two follow up surgeries, Dr. Zuniga would be working solo, as reconstruction was a plastic surgery procedure; her job was to remove the cancerous tissue and test the lymph nodes during the first surgery. This was the first time I'd heard or even considered that we were talking about more than one surgery. I had just barely gotten my brain wrapped around the idea of one surgery! However, she also confirmed the diagnosis of Paget's disease of the breast, and that it was DCIS. I asked her what stage cancer it was--one of the biggest questions I had going in. She said based on everything she had seen, it was Stage 0. Honestly, I had never even heard of Stage 0. Stage 0 was good! And she assured us she had every indication that she would be able to excise all of the cancerous tissue and that the prognosis was excellent. Of all the things I heard that day, that was the biggest relief--the one clear way I had to conceptualize what was going on in my body.
We next met with the oncologist, Dr. Perkins, who reiterated what Dr. Gumina had said. He also said that during the surgery, they'd test and remove 2-3 lymph nodes to see if the cancer had spread, though he highly doubted it. If there was evidence it had spread, they would take out more lymph nodes, and that would inform them whether chemo or radiation would be necessary. Paget's, he said, was something they didn't really know the cause of, and he assured me that nothing I had done had contributed to contracting the disease. He told me I'd be following up with him for the next 10 years as they monitored my progress after surgery. Ten years! Most people's relationships don't even last that long anymore! But here I was meeting a man to whom I would be inextricably tied for the next decade. It's a good thing I liked him! The radiation oncologist followed Dr. Perkins. His name was Dr. Silveria. He was brief; he was fairly sure I wasn't going to ever even see him again, as Stage 0 DCIS with a full mastectomy didn't generally indicate any need of radiation. Of course all of the doctors indicated that there was always a possibility they would be surprised by something they didn't anticipate once they got in there--they didn't want me to think they were guaranteeing there wouldn't be any chemo. They've got to have a disclaimer clause, because even exact science isn't always an exact science.
Finally, we met with my geneticist. (I would meet with the plastic surgeon separately the following week.). Dr. DeLozier was an enthusiastic woman who seemed fascinated with my family history. To be honest, on paper our family history looks pretty dismal. I've already talked about how early everyone in my immediate family has tended to check out. I have always chosen to sort of gloss over that particular statistic and focus instead on the fact that besides my mother, the women in my extended family definitely have longevity on their side; most of them have lived well past their mid-80s and into the 90s. I'm planning to follow their lead. However, within our immediate family there has been kidney disease, throat cancer, heart disease, high blood pressure, thyroid issues, arthritis, lupus, depression and other mental health issues...no wonder the geneticist was fascinated with me. However, she did say that her primary goal was to see if I could be tested for the BRCA 1 and 2 genetic mutations (in addition to a panel of 4 more mutations that they test for). She--as well as all of the other doctors--all thought my Paget's was unconnected to BRCA, but the doctor said that that because of how young I am (48 is apparently young to develop Paget's) and with my family's health history, she thought she'd be able to get approval to get the test covered by insurance. The test, I understand, is an expensive one, somewhere in the neighborhood of $3,000, and most insurance companies don't like to cover it. BRCA, or as even medical professionals are calling it these days, "The Angelina Jolie Gene" (so called because it came to the forefront when she had a proactive double mastectomy due to testing positive for it) is a mutation that makes you much more likely to develop breast cancer in the unaffected breast, have a recurrence in the affected breast (if you have a lumpectomy rather than a mastectomy), or that your sisters or daughters could develop breast cancer. Again, the doctors didn't actually think that BRCA was the cause, but the more data they have to look at, the more doctors can understand and treat those who do test positive for BRCA. There's also a connection they're looking at that there may be a connection between IVF and breast cancer, and since Doug and I had (unsuccessfully) undergone IVF a handful of years ago, that was something else they could gather data on with genetic testing. I was happy to try to get the test covered because it would give me assurance I could give to the very important other females in my life that my diagnosis wouldn't put them at greater risk. Fortunately, my insurance did choose to cover the test. (The results that came back a few weeks later did, in fact, confirm this great news--I tested negative for all of the genetic mutations they checked.)
My take away from all of the meetings was:
1) Stage 0!
2) 3 surgeries!
3) Anywhere from 4-8 weeks off of work.
4) Probably no chemo or radiation (no illness, no hair loss and wigs)
5) I'd be meeting with the plastic surgeon, and then everyone would get all their calendars together and get me a surgery date about a month away.
Now I felt I had enough information to take to my kids. Two of my kids are worriers, planners. Now I felt I could answer most questions they might have, at least in the short term. When we picked up Bree from the airport, I asked the other kids to come with us, and once we got in the car, I suggested we go grab something to eat before I took them over to their dad's, where they would all be staying for the weekend to visit with their grandma. It was a pleasant meal, and I didn't really know how to jump in with such heavy news. Finally, Doug looked at me and said, "Hey Babe, we really need to just do it." I took a breath and jumped in. As soon as I said the word cancer, I saw tears in the eyes of the kids, so I took a speed course to the good news--it was caught early, there's going to be an operation and they'll get it all, they don't think I have to worry about chemotherapy, and everything is going to be FINE. I'm not planning on going ANYWHERE. Although I know they were worried, I think they took the news well and were perhaps relieved to know that a cancer diagnosis didn't have to mean something dire. Doug thought maybe I might have underplayed it too much--made it sound too minor--but I decided that was enough for now. They could take some time to digest that information without having to imagine the worst. The rest we'd learn and share as we went along. After all, Doug and I were both awfully new to all of this information as well.
Having finally broken the news to the kids was a huge weight lifted from me. As soon as the kids were at their dad's, I decided to message a big group of friends and family to let them know as well. As I said before, I'm a believer in prayers, positive vibes, and love as healing forces. I don't think we tap into that enough as a society, and often there's a sense that people feel like there's a strength in suffering in private--a brave and stoic front. I just don't even think I'm capable of holding that kind of thing so close to the chest, and I don't think there's any shame in asking people to help generate positivity. I think Doug was a little skeptical, being in general a more private person than I am: "Why do we need to share it with everyone? Do you think that's necessary?" Necessary? No, probably not. But you know what? Everyone deals with their own mountains to climb in their own way, and there's no right or wrong way to do it. For me, I just kept thinking to myself, if "X" was experiencing something major in his or her life and I didn't know about it, I would hate that I hadn't known to help support them in any way I could. Those are the kind of people I tend to surround myself with, and I didn't want them to find out second-hand or after the fact. Also, I knew that Doug was going through this process in his own way, and although we share everything with each other, I knew that he would feel like he might not be able to share his fears with me because he wouldn't want to add to my burden. I wanted people we know and love to not only support me, but to check in on D as well and give him a shoulder or an ear whenever he might need it. My kids would have each other to share concerns, but I'm usually that person for Doug. I knew our friends would know to reach out to him as well as me along the way. I had no idea how very much we would be loved and supported once the word got out.