Friday, February 6, 2015: At last the wait to meet with the oncologist was over. We were shown into her office by a lovely nurse who was very kind and compassionate. I was still screaming on the inside and yet I connected the doctor’s last name with the last name of a famous medical researcher. Of course I made a mental note to ask! I’m shocked at how social conventions don’t desert us even in times of crisis.
When Dr. F. entered the room my first thought was “this girl is a senior in high school!” Oh, my God, she looked so young. I didn’t see how she could possibly be a college graduate, much less an MD with years of education and experience. But we were there and I had cancer and I needed help, so we hung in there. And I did ask her about the famous medical researcher and she said “our grandparents might be related, but I don’t know for sure. But he’s an amazing guy.”
Dr. F. said that my cancer wouldn’t be staged with complete accuracy until she could operate on me–something that would happen in less than two weeks. I was hoping she would just wheel me down the hall and operate in the next five minutes but apparently all that Bojangles chicken and sweet tea might have caused difficulties. In cases of ovarian cancer that has left the ovaries and begun spreading in the abdomen, as mine had, an exploratory laparotomy is what reveals all. My uterus, cervix and ovaries would be removed and she would remove all the cancer that she could see as long as removing it wouldn’t injure me. One of the other partners in her practice would also be present as they prefer to operate on ovarian cancer patients in teams.
Dr. F. also told us that ovarian cancer can be present in the abdomen in many tiny nodules, as if someone dumped a salt shaker inside. Those nodules can’t all be removed surgically, but they can be eradicated by chemo. This sounded pretty grim. She also asked if she had to cut low into my intestine to remove cancer if I was willing to have a colostomy. I didn’t hesitate and neither did W. The point is to live, even if I have to carry my poop around in a bag.
The other term used for my surgery was “debulking.” As someone who’d been working on losing weight for several months that sounded pretty good. Another bright spot! Part of my surgery would involve removing the omentum, a fatty pad in the abdomen that protects the internal organs. Mine was swollen. Hey now! You’re removing FAT from my abdomen? Let’s go!! The news just kept getting better. I didn’t think to ask if she could do a tummy tuck while operating on me, dammit.
It was at this appointment that Dr. F. told me I would have to have chemo for six months. There are several different forms of chemo depending on the type of tumor and the extent of the disease. This decision would have to wait until the surgery and pathology. I asked about my daughter and genetics testing. She assured me that this would be a high priority. I can’t tell you how much we hope and pray that this is a weird thing that happened to me and will never, ever affect my sweet girl or her girls. (I’ll be seeing the genetic counselor in a week or so).
I told Dr. F. to always be honest with me and not hide anything from me. I want to know the truth and all of it. That prompted W to say he had a question but that maybe I didn’t want to hear it. I knew immediately he was wondering about the five year survival rate for stage III ovarian cancer (we haven’t been married almost 35 years for nothing) and I told him it was okay, so he asked. The answer was “sixty to seventy percent.” Now maybe you read that number and say, “Hey, that’s not so bad. That’s actually pretty good!” What I heard was, “You are going to die and soon.”
Dr. F. clearly knew her stuff even if she was a mere child. At this point she turned us over to the nurse again and she drew blood for my first CA125 test (more on that later) and set us up with the scheduler. Surgery was scheduled for February 17, a week and a half later. It seemed like an awfully long time to walk around with CANCER GROWING INSIDE ME. Cue the internal screaming again.
CA125 is a marker in the blood of ovarian cancer patients. From what I’ve learned ovarian cancer patients live and die, at least emotionally, by that number. Normal is 0 – 35. Mine was 986 on the day of diagnosis. The nurse explained that it could be much higher or lower and that it has nothing to do with the severity of the disease–it’s more a case of the body’s sensitivity to the cancer. That number didn’t really upset me, but I knew that I would want it to go down and never, ever go up.
It was time to leave the hospital. We made our way to the car and at some point I began texting and emailing my closest friends to tell them what was happening. I know that I did but I have zero memory of it. I had to call my brother and my parents and we had to figure out when to tell our daughter. I called my brother first. J lost his wife six years ago to leiomyosarcoma, a rare and terribly aggressive form of cancer. She was in her mid-forties. It was a prolonged and awful illness and his grief is still very present. By the time he and I were finished speaking we were both in tears.
The next call was to my parents. My mother is 82 and my dad is 85. I was in agony thinking about breaking this news. My mother answered the phone and I very straightforwardly said I had some very bad news. I was extremely calm and laid it out for her. She was almost cheerful. It was really odd. I didn’t speak to my dad: his health isn’t the best and I’d already had to tell one parent I might be dying, so I hung up. I told W that my mother was in shock but there wasn’t really anything else I could do for her right then.
At this point I began thinking about my funeral. Now before you think that sounds extreme, you should know that I have a pronounced dark side and am a planner, so I’ve thought about my funeral for years. I even have my funeral director picked out: I’ve known him for years and I know he will handle everything with dignity and according to my wishes. I began mentally listing my jewelry and deciding about pieces I would like to give to women other than my daughter and daughter-in-law who will get most of it. I also told W that instead of the stress of being a church music director ruining my Christmas and everybody else’s that I was going to ruin Christmas by dying. He actually laughed and said, “You won’t be dead by Christmas.” Hmm.
Our daughter was going to be at home that evening (she attends school about two hours away). Lovely Miss R is a real live beauty queen. She competed in the Miss North Carolina pageant in 2013 and made the top ten in her first appearance at the age of 19. She took 2014 off and decided to compete again in 2015. She was in rehearsals for a local preliminary pageant that would be held the next day. The preliminary leads to the state pageant, which leads to the Miss America pageant. (Please do not confuse this with the world of Miss USA!) We didn’t want to tell her after the pageant so we decided it would have to be that evening after rehearsal. She would have about twelve hours at home before she had to go for her interview with the judges.
We made it home and our son called and wanted to come see us. I can’t imagine how he and R feel. I’ve never faced their situation. I was so thankful for his presence. We got pizza (pizza!!) and beer and talked, and not only about cancer. It was actually pretty nice and relaxing despite everything. M stuck around for a while but finally went home to his wife and little boys. We waited for R to come home. I cried a lot and W and I held each other. I felt I might be dying of grief. And I felt so, so sorry for all the people I love who had to get the awful news. I don’t like to make people unhappy and this was making an awful lot of people unhappy.
When R came home we explained what was happening. She played competitive softball for many years and as a pitcher had to learn to control her emotions. She is very good, just like her dad, at dealing with difficult situations without falling apart. She kept herself together but quickly went upstairs to call her boyfriend. I was so exhausted at that point and I don’t think I stayed up much longer (a lot of the day is a blank). R was on the phone with G and crying very hard but she did it so quietly I knew nothing about it. W spoke with her at some point. They have always had a strong relationship and I knew she would lean on him for comfort.
I don’t know how I even closed my eyes that night, but I do know that I did. I didn’t have cancer in my dreams (I do now). And waking the next morning was awful when I had to remember what was happening to me.