Saturday, March 2, 2013

I believe in stories


The end of December my ten-year-old, golden retriever, Yankee, started following me around the house whimpering.  At first I was somewhat sympathetic and concerned that something was wrong with him.  As it continued, I found it quite annoying, and a started calling him "shadow dog" because he continued to be so clingy.   One night during the first week of January, I woke up at about 3:00AM with just an odd sensation of discomfort in my left breast, armpit and arm. Not pain, just a faint achy - ness.  As I was laying there trying to figure out how I had a pulled a muscle in that area and trying to go back to sleep, the image of Yankee staying close to me and whimpering entered into my night consciousness.  It was in that moment I realized he might be picking up on something wrong with me.  I did the most thorough self-exam I could manage and could not feel anything with my fingertips.   Nonetheless, the following morning I called my general physician and scheduled an appointment for a few days later.   She also performed a very careful manual exam and could not feel anything.  Fortunately, she trusted my intuition and scheduled a mammogram for the following week.  The routine mammogram was followed by a magnified mammogram, which was followed by an ultra-sound.  The ultrasound showed a small questionable area that the radiologist said was “was not clearly worrisome but was worrisome enough to warrant a biopsy.”  

The next step was to meet with a “Breast Health Nurse” and schedule a biopsy.  All of this was going on during the weeks and days just prior to my husband Bob’s complete hip replacement.  He was in constant pain, needed crutches or a walker to just move around and was unable to do much of what he normally did at work and at home.  The mammogram, ultrasound and meeting with “Breast Health Nurse” all happened the day after I had been with Bob at the Mayo Clinic in Rochester for an exhaustive pre-operative checkup.  During much of this Mayo visit, I was battling a fierce headache and took some generic equivalent of Excedrin.  Because I had this “blood thinner” in my system, the Breast Health Nurse said it was necessary to wait five days to do the biopsy.  Which would have landed it right on top of the day Bob had his complete hip replacement.  While I wanted to move ahead on this, it was at this time I decided I needed to set aside feelings of “urgency” regarding this.  I made the decision to get Bob through his hip replacement and then scheduled the biopsy for the following week.  My sister Mary Jo and her husband (also named Bob), graciously delayed their departure for Arizona, and stayed in Minnesota an additional ten days to help with Bob’s recovery, and be with me through the scheduled biopsy. 

On January 28th, I had the biopsy done and while it all went fairly smoothly, it was more complicated that I had expected.  A core sample of the questionable tissue was removed, and sent off to the lab.  I was told I would hear back from my primary care doctor in approximately 24 – 48 hours. 

On January 30th, I received a call from the "Breast Health Center" in Mankato, where the biopsy was done, telling me that they were sending my biopsy sample to the Mayo Clinic in Rochester for a second opinion.  The nurse who called said this does not mean it is bad news, it just means that was "not clear or decisive" and warranted a second opinion.

To make a much too long story shorter, it took a total of nine days to get my pathology report back.   On the 13th of February I had my first consult with Dr. Rachel Jones, who is a surgeon in Mankato.  It ended up being a very long afternoon, because my pathology report had not been sent to her, and she needed to spend considerable time and energy chasing it down before she could have a meaningful conversation with me about it.  What the report essentially said was "microscopic foci of invasive lobular carcinoma (grade 1) arising in the background of a lobular carcinoma in situ".   This translates into is a very small malignant tumor, with a few little threads of cancer beginning to carry the cancer to the adjacent tissue.    

On the 20th of February, I met with Dr. Singh, an oncologist.  I learned that the type of cancer I have is Estrogen positive, progesterone negative, and HER2 positive.  I will definitely need to have radiation, hormone therapy and some treatments that fall under the category of “chemo” but as my surgeon framed it, I may not need the whole “she-bang.” In part it will depend on the actual size of the tumor removed.  I do know from the preliminary biopsy that the type of breast cancer I have is Estrogen positive so Tamoxifen is in my future, and it is also HER2-positive, so I will take a course of treatment with Herceptin, which specifically targets HER2-positive breast cancer cells. 

On February 26th, I had a "partial mastectomy" or what we commonly think of as "lumpectomy." At that time the surgeon also biopsied the "sentinel lymph nodes" to determine if the cancer had moved into my lymphatic system.  The surgery went well.  No sign of cancer in the sentinel lymph nodes during the preliminary test.  The worst part was that I got incredibly sick from the anesthesia.  The 20-minute trip from the hospital to my home was challenging and it was a very rough night.

Three days later, on March 1st, my surgeon, Rachel Jones, called me. The good news is that the lymph nodes are still all clear on the final pathology report. The bad news is that on two sides, the invasive threads are too close to the margins removed, so I will need to go back into surgery next week.  Not sure if it will be just additional tissue removed at the margins, or if it will be a complete mastectomy.  That will be decided after my meeting with the surgeon on Monday morning. 

So that brings us up to today.  Saturday, March 2, 2013. It is cold, but sunny and a beautiful day outside.  My former student and friend Ashleigh asked how I was feeling about this next surgery.  I replied to her, “My feelings about the next surgery are complex.  The underlying reason for the next surgery is more worrisome.  Even though this was caught early, those microscopic invasive threads of cancer have spread farther than originally thought.  Disturbing.  And they are microscopic so they would never show up on mammography. I just need to make an informed decision as to how to proceed (take more tissue on two sides, to give wider clear margin, or take the whole breast) based on the facts as we know them, and not on irrational fear and anxiety.  Last night when I could not sleep, I just wanted some "bodywork" - some hands on massage, and some energy work - reiki or bmc.  I need to work some of the fear out of my body, before I can hear what it is telling me.  Right now I feel fairly tied up in knots, so there is very little body wisdom flowing in my direction. “ 

When I returned from China, my dear friend Sue Maerlender, gave me the book The Foremost Good Fortune, by Susan Conley.  This is a beautiful memoir of a young American woman, living in Beijing with her husband and two small sons, who discovers she has breast cancer.  After returning to the United States for treatment, she and her family return to China.  The excerpt below is from that return trip. 

 “All year long the boys have been asking me what I believe in, and I’ve been able to avoid the full answer.  I smile at them and reach out my hands to touch their heads.  The next time they ask, I’ll be better prepared.  I’ll explain to them that I have a new kind of faith now.  A trustingness.  And maybe it’s passed down from a god, or gleaned from the earth.  I’ll say too that I believe in language.  Thorne will probably counter that language is not a god – that words can’t be my religion.  I’ll say, Why not?  Because I ‘ve come to see that words are what get me up in the morning.  What allows me to go down on my knees in the small temple and pray.  Maybe in the end, words are something we can carry with us.  Because the stories of our lives live on.  And I would like my story to be about hope.  It will also have the word disease in it, but that won’t be my whole story.” 

I love that passage.  So this is where I will leave this background story.  I too believe in language.  I believe in stories.  My story will contain this chapter about breast cancer – but it too won’t be my whole story. 

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