Thursday, June 24, 2010

Walking the line

It's been a year now since my first lumpectomy. I often flash back to the moment my mom was told "you have cancer." Twice, she was told that. First with breast cancer, then second, with colon cancer. She's survived it both. Now she has alzheimer's and to be honest, it has been the hardest of all diagnoses.

Then there was my father. Healthy and young. His symptoms were symptoms often disregarded and brushed off by many (like my father) - weight loss and stomach cramps. He didn't complain and didn't want to go to the doctor, until it was "too late." My mom said he started turning yellow - jaundice. I lost my Papa to liver disease when I was 4 years old - he was 39 yrs old.

I have in me the DNA of both my mother and my father. For a year now I have walked the line where doctors have essentially said "i'm on the edge" of cells turning to cancer. After my first lumpectomy it was simply one site of abnormal cells (atypical ductal hyperplasia). My second lumpectomy 6 months later after another mass grew in my left breast was now two sites with atypical cells, but this time, the pathologists said it was borderline DCIS (ductal carcinoma in situ). At the same I was also struggling with stomach pain, fatigue and weight loss. I lost 34 pounds in a year without trying. After numerous procedures and tests, my GI diagnosed me with pancreatic insufficiency in March of this year. What he does know is that my pancreas no longer produces lipase, an enzyme that digests fats. What he is unable to tell me is why. "It's good we know what is causing your weight loss and that the pancreatic enzymes help. It's not so good we don't know why," my doctor says. He wants to monitor me closely so for now I have to see him every 6 months. I take pancreatic enzymes at meal time so that my body is able to digest food. My weight has stabilized, although the stomach pain has returned which I believe is due to the stress of worrying and caring for my mom, who has alzheimer's.

I chose the route of "close surveillance" after my first and second lumpectomies. My options were: double mastectomy, tamoxifen or close surveillance. After a lot of thought, careful consideration, inner reflection and heart to heart talks with my partner I chose close surveillance. In my mind, I hadn't crossed the line yet ... I also believed that despite being high risk, the doctors were telling me that it was not 100% that the atypical cells will turn to full blown cancer. After my second lumpectomy I was also still struggling with the stomach issues and my doctor hadn't yet narrowed the problem down to my pancreas, which to be honest, was a larger concern to me, and continues to be a larger concern. In my gut I felt like there's something larger going on in my body and a double mastectomy wasn't the answer. And as my surgeon said ... "close surveillance is a reasonable choice for now. We will monitor you closely and you can also make a different choice down the road."

So tomorrow morning, I go in for an MRI. In a week or two the results will come in and I will have a better sense of the direction my cells have chosen to go. I lost Papa when I was 4 years old. I'm 45 yrs old now, soon to be 46 and to this day I miss him like a 4 year old misses her father. I still long to be held by him ... I felt safe and protected in the arms of my Papa - a calm, loving, presence.  I carry Papa in my heart, always. He has been with me growing up and all my life, just in a different form.

As I go in for my MRI tomorrow I pray for strength and courage to be okay with whatever is meant to be. I can't control the outcome. All I have is this moment. I also know that I always have my Papa with me. In my darkest moments, he is holding me up and carrying me. And when he knows I need more support I believe he sends me angels, like my partner and Ahnung, and Missy and Mister too :)

" .... How you stand here is important. How you listen for the next things to happen. How you breathe."
[From "Being a Person" by William Stafford]


  1. i am certain he has sent you Henry, too!

  2. No he sent me YOU, who then brought Henry along!! :)