Instaboob guilt

I was so touched this week when one of the readers of this blog posted to ask me what the results were at my doctor's visit. Usually I treat this blog somewhat as a diary. My only hope being that someday, some other terrified 34-year-old mother of three whose world is crashing down will find it and somehow find a measure of peace. I am so grateful for the kind thoughts from all of you.

So, I went to that doctor's appointment to get the results of what is called an Oncotype DX test. The test gauges your likelihood of recurrence of cancer (I believe for the next 10 years). You can score anywhere from 1-100. Anything below 18 is low risk and it has been determined that chemo is more detrimental than helpful for this group. 18-31 is intermediate risk. The rest are high risk. I thought for sure I would be intermediate risk. Up to that point, my cancer had been so strange, unusual and unpredictable. I figured it would continue to confound me and put me in a position to make a difficult decision. It surprised me. My score was a 13. You may notice I didn't say, "my score was a 13!!!"

Although it was one of the most exciting moments of my life (that absolutely required a follow-up fruity alcoholic drink, huge bowl of pasta and some retail therapy), I found myself experiencing an interesting emotion on the way home. Guilt. Lots of guilt. I couldn't think of anything except all of the amazing women (and even some men) who have not been as lucky as me. I had spent the last six weeks dreading with every fiber of my being the day my hair would begin to fall out. I cried when the girls would worry out loud about how "different" I would look. I laid awake at night trying to prepare myself for how to deal with constant nausea and still be a mommy. I stared at the checkbook wondering how we would pay the bills if I continued to miss work. Suddenly, all of that was gone. But for so many women, it's not gone. Would they resent me? Is my battle a lesser one because this? Can I even share stories with them? What else will go wrong since I have caught such a lucky break?

Four days later, I had my stitches out and one more drain. One additional drain is STILL in and is the bane of my existence, but they said that I'm healing perfectly. They were able to do my first "fill." I was warned that it would be something like the Barbie doll of the '60's that grew breasts when you pumped her arm. They used a magnet to find my port, shoved a needle in like I was a basketball and started pumping. Sure enough- Instaboob (I'm trademarking that). While it was by far the most disconcerting experience I ever hope to have, I was so thankful to have something that made me look like a woman to the outside. I will probably have to do it two or three more times before I can have my permanent implants put in. And in case you're wondering, the answer is YES. They will keep doing fills until I say "stop."

I still have waves of guilt, but going back to work has helped distract me. I would sit at home wavering back and forth between resenting my circumstances and then feeling guilty for doing it. Going back to work allowed me to return to an identity other than "cancer patient with no boobs." This week, though, I think I've reached some new stage. For reading's sake, I'll call it the, "Oh God, I'm going to die," stage. My self-analyzing says that over the last six weeks I've been in "fight" mode. Between planning and doctor's visits I didn't have time to think about the future ramifications of this disease. It only really hit me the night I tried to sleep in bed for the first time. I laid there in the dark (with no TV to distract me), and the silence reminded me that I could be dead. One change in my recent circumstances- a cancelled doctor's appointment, an inexperienced medical intern doing the breast exams, a less concerned midwife- I would be one of those even rarer cases. The ones that make you shake your head and hide from the fear that it could be you.

Nighttime is when numbers creep into my head. I start analyzing all of the percentages (95% estrogen receptor positive, 82% progesterone receptor positive, 13 Oncotype, 8% recurrence) and then I start remembering Daddy. I have these flashbacks of Daddy in his last two weeks. Bloated, yellow and distant. Then in his last two days- unable to walk and finally unable to speak. I become terrified that it will be me. I knew before that it COULD happen. We all know that, in theory, our bodies can turn on us. For those of us who have seen it, we are even more acutely aware of that possibility. But now it has actually happened. Estrogen made me grow a tumor (an additional 5 cm. of it still in my duct) that could have killed me. It could come back. It could have spread without us knowing it. I remember asking the chemo nurses how they avoid becoming paranoid. They told me that every day one of them "has cancer." So will I live in fear of cancer for the rest of my life? My body turned on me once- will it do it again?

Now I have been given several decisions to make regarding my future treatment. My loyal oncologist who treated my father recommended (without question or debate) 5 or maybe 10 years of Tamoxifen, which he claims 90% of women "tolerate well." He wants me to start it "yesterday" and have a hysterectomy before the end of the year. Primarily he wants my ovaries out, but after five years on Tamoxifen you are at an increased risk of uterine cancer, so he said they "might as well" take out my uterus while they're in there. My oncological surgeon's PA was shocked by this and asked me to get a second opinion. I met again with the humorless German female oncologist who first treated me. She gave me two options: Tamoxifen for 10 years or an oophorectomy (removal of my ovaries) followed by 5 years of Arimidex (which she claimed is "better" than Tamoxifen). She said that the risk of uterine cancer from Tamoxifen is 1 in 1000 and none of them have been fatal, so she would not recommend that more extreme surgery and said that it has a four week recovery time (compared to 2-3 days with the oophorectomy). She told me she would choose the second option if it were her.

Some people might appreciate these options. The problem is that it gives me the illusion that I have some control over my ultimate fate. I feel like I'm choosing between not doing enough and getting cancer again (Tamoxifen alone) or going overboard and becoming a menopausal monster at age 34 (the oophorectomy will immediately put me into menopause).

As a Christian, I know that my future is in God's hands, but He has now put this decision in front of me- and it's a life or death decision. So I have been researching until my fingers bleed, hoping that something or someone will make the answers clear to me. I have given myself permission to wait and think for just a little while, but waiting even a little while scares me. Because I am premenopausal I think I have decided that I will try Tamoxifen first instead of Arimidex, but I will wait until I have adjusted to my "new normal." I want to be feeling my best and be prepared for whatever side effects may head my way. I know that, ultimately, I must have the surgery to minimize my risk. If I don't, and something comes back, I will never forgive myself. I'm just not ready to commit, though. I've lost so much of what makes me a woman already- I'm just not ready to give anything else up quite yet. I'll decide and commit before Christmas and I think I'll have the surgery by my birthday in May. I wrote it down so I'm committed. I'm also writing this down- I'm going to run a half marathon in 2014. It's something that I have said for years I would never, and could never, do. I've never run farther than five miles. On the other hand, until last year I had never seen someone I love die. I didn't think I could survive it, but I did. Until this year, I had never had cancer invade my body. I didn't think I could make it through, but I have. I assume I'm incapable of running 13.1 miles next year, but I'm thinking maybe I could be wrong, because obviously I've been wrong before. Now I just have to prove it to myself.

My Self

I know I wrote about perspective yesterday. I know I'm supposed to look back at those words and live them. Lead my girls by example. But right now I feel worthless. I feel angry, empty, lost and worthless. I know we all have worth, and I know that I don't deserve anything better than anyone else, I'm just telling you how I feel.

I keep trying as hard as I can. I got dressed and did my hair today. I went out to the mobile mammography unit to hold someone else's hand while she had her first mammogram in decades. The fresh air felt so good. Yesterday I looked at my chest for the first time without crying. I decided to tell myself to be proud of those lines. Those deep, primitive looking wounds that will surely remain there for the rest of my life. I nodded my head in agreement when everyone told me how lucky I was that "they got it early." I talked about how sure I am that I'll be back to work next week. Back to life. Moving on with my "new normal."

By the time I got home three hours later, my body hurt so badly that I could barely walk into the house. I slept the afternoon away and could barely sit up to kiss my sweet babies when they got home. I can't get their drinks at dinner, I can't pack their lunches, I can't help them with their homework, I can't pick them up and hold them when they get hurt, I can't take them to get their hair cut for picture day. I can't help them clean their rooms, I can't hug my husband, I can't snuggle with my puppy, I can't even bend over to tie my own damn shoe. And it hurts. It doesn't matter how many pills I pop, there are hard plastic shells where I once had breasts and they are being drained by 12 inch tubes and sometimes it hurts so much. Sometimes it feels like fire. If I brush my chest with my hand, it feels like I've just jammed a knife in my exposed muscle. Sometimes I'll even have "ghost pains" like an amputee. I feel like a burden. Like a shell of myself. I feel like a terrible Mom and wife.

While I was sleeping half of the day away my oncologist called. The message said they have the results of the test that will gauge the likelihood of my cancer reoccurring. I had been so caught up in recovering from this surgery and moving on with my life that I think I put the idea of chemo right out of my head. The message said that the doctor needs to discuss the results of the test with me in person on Monday. I think I know what that means. I could be wrong, but you know how I feel about hope, so I'm not going to waste my time "hoping." I know that the reality of my cancer is that most women have to follow up with some chemo, I knew in my head that I'll be going into menopause by Christmas, but I was so proud to have faced my fears over the last week that I completely forgot that my battle may only be half over.

Just as I was beginning to force myself to adjust to the new me, I remembered that I don't even know who the 'new me' is. I don't know how to accept the fact that just as I was beginning to like myself, my self is being ripped away from me- cut out of me- poisoned out of me. I don't know myself at all right now. I don't know how to do this. I know I can. I know I have to. But I don't want to.

Perspective

When we went for a second surgical opinion, I wasn't expecting much. I held a secret hope that they would tell me I was the perfect candidate for the muscle-sparing TRAM flap (aka tummy tuck) surgery. In reality, though, I was just so tired of being touched that I spent the 3-hour drive thinking about how I was probably wasting my time. Either way, someone would eventually be getting this crap out of my body. Perspective.

The female surgeon was very nice and efficient. I felt comforted by the fact that she actually had breasts. . and children. It's like the difference between an OB who has a vagina and one who doesn't. At least if I had to be here, I had finally found someone who could relate to what I was feeling. Perspective.

As she went through the physical portion of the exam, she pressed on my stomach and moved her hands back and forth. I noticed immediately that it hurt. I thought maybe that Subway breakfast sandwich I inhaled on the way over was going to come right back up. She looked at me and said, "what's this?" I said, "Ham and egg white on flat bread?" She said it was a "suspicious mass."

For those of you who don't know, my Daddy had abdominal pain 22 months ago. They sent him for an abdominal CT scan and found the suspicious mass that took him away from us nine months later. So when the surgeon looked at her nurse and said, "get her downstairs for an abdominal CT scan right now," the floor fell out from underneath me. She said she didn't know what it was and that we would investigate. I tried to mumble something about how a suspicious abdominal mass killed my Daddy. Neither John or I remember much else from the meeting. She agreed with most of the other opinions. I wouldn't be a TRAM flap candidate, but the healing time for that would be so much worse anyway, she said. She seemed to think that I would be excited that I would be allowed to keep my nipples. And that there is a 20% chance of necrosis of the nipple. Yeah- that means it dies and falls off- so sexy. Then she told me that it would be at least another month before they could do my surgery. Suddenly Mr. Magoo was looking a little better. Perspective.

We listened as long as we could before we told her that all we wanted to do was get the CT scan over. It was like we were in some alternate universe where they didn't understand that they were causing us the greatest degree of mental distress possible. I wanted to scream at them and run.

They walked us downstairs where a nice man in his 50's who reminded me of my Daddy told me that I would have to drink 44 ounces of nuclear fruit punch and sit around for 90 minutes thinking about dying before he could even do the scan. I wandered around the hospital shop looking at wigs and with every sip I wondered if I would even have the chance to wear one. Perspective.

As we sat, we never uttered a single word. We thought I was dying. I wondered if I would get longer than nine months. John wondered what he would do without me. I wondered why God was punishing me.

After about two hours, they took me back and injected me with some hot radioactive dye. As I started to cry, I explained to the nice man that it was my 10th anniversary and I thought I was dying like my Daddy. He told me he would make sure I wouldn't have to wait until Monday for my results.

While we sat back in the waiting room, two middle-aged women with breast cancer sat and talked loudly about how horrible chemo is and how their bodies went to shit once they stopped producing estrogen. If I hadn't been so scared that I was dying, I would have kicked both of them right in the head. At that moment I felt so abandoned by God- almost as if Satan himself was laughing at how terrified I was.

After half an hour the nice man brought the phone in with my doctor on the other end. I held my breath as she told me that I had an anomaly that I was born with. It's called a horseshoe kidney. My kidneys are fused together in a horseshoe shape and are slightly enlarged, but they are functioning perfectly and it's completely harmless. Are you f*ing kidding me?! We ran out of that hospital as quickly as we could. We sat in the car and watched two young hipsters get into their Prius with their Starbucks Vente Latte's and we cussed at them just for fun. We sat in our sound proof car and told them how they better appreciate their perfect f*ing yuppy cancer-free life with no mysterious stomach masses and perfect f*ing boobs.

At our over-priced anniversary meal, John looked at me with a huge smile and said, "this is the best anniversary ever." I stared at him with a very clear "what the F are you talking about- this is the WORST anniversary I could ever have imagined," look. "It's the best anniversary ever because you're not dying," he said, "and I can't make it without you." Perspective.