I thought that self exams would help me detect breast cancer early.
I know that my breasts were cystic making it very hard to find a tumor. My 40 year old routine mammogram couldn't even detect my tumor. My radiologist had me follow up my mammogram with a sonogram. Then she saw the 1.7 cm tumor and an enlarged lymph node. And, even then, when I knew it was there and exactly where it was, I still couldn't feel the tumor.
I thought that nursing two children twenty months each and leading what I thought was a healthy lifestyle would help prevent breast cancer.
Not true for me.
About treatment . . .
I didn't think losing my hair would be such a big deal. I was very matter of fact. It would just be necessary, temporary and not such a big deal.
It turned out to be a very big deal. For me, for my kids, and did I mention for me?
A. Very. Big. Deal.
I thought that I would "bounce back" and feel like myself a few days after every chemo treatment [after all, Robbin Roberts of Good Morning America (and many other women) worked through chemo treatment].
I know that I definitely got some energy back a few days after each treatment--but bouncing, no, there was no bouncing back. I was running on pure "chemo adrenaline" last year.
I had no idea how, but I thought that Jay and I would have to manage all of the details of our life on our own while I went through treatment.
My friends carried my family and me through last year. With carpools, childcare, meals, phone calls, and visits (and did I mention childcare?).
They told me what they would do for me before I knew what I needed. I am indebted to them. I know that we could never have done it alone.
I thought that reconstructive surgery reconstructed.
I know that reconstructive surgery does a great job--but there is no way to recreate a 40 year old breast and nipple. Yes, I said nipple. Radiation treatment damages the skin and vascular system in the radiated area and makes nipple reconstruction unsafe and almost impossible. So, I am asymmetrically reconstructed and will someday have a tattooed nipple. Yes, I said tattoo.
I thought that after radiation was finished and the external burn (like a very bad sunburn) healed, I would be done with all of the physical healing from my cancer treatment.
I know that was only the beginning. My reconstructive surgeon said to expect the internal scarring and healing from radiation to last about 6 months. My last radiation treatment was October 1, 2010. But, every day I wake up, and my left side is still tight and sore from the scar tissue healing. I know it probably, to some degree, will always be.
I thought it that people diagnosed with and treated for cancer wanted and needed privacy and time to rest.
I know that what worked best for me, what got me through my hardest days, was getting cards and phone calls and messages from people who were just checking in. No response or phone call back required. That was the best. I knew that people were thinking of me and needing nothing back in return.
About life after treatment . . .
I thought that when my treatment was over I would be paralyzed by a fear of recurrence.
I know that I'm vigilant (some might say obsessed) about preventing a recurrence--but not paralyzed. Alright, some days I'm still a little paralyzed.
I thought that breast cancer was highly curable.
I know it is--but life expectancy is greatest with early detection. Late stage breast cancer is often incurable and terminal.
I thought that a year and half after diagnosis, cancer would be completely "in my rear view mirror."
Some days it is. But, other days it feels like it's still sitting right next to me.
If you know someone who could benefit from or would like to read this blog, please forward the link to them.beingmemovingforward.blogspot.com
Breast cancer alone can be terrifying, but the breast cancer community is empowering.
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