What a long, strange trip it’s been…

I love blogs, I read them all the time.  I had know idea how terrifying it is to imagine hitting Publish for the first time – it’s kind of putting your soul out there, huh?

Now – about me. I’m Jane, born and raised in Colorado Springs, CO (s/o to Mitchell Marauders) in a large Catholic family (s/o to Divine Redeemer Cardinals). I have a degree in Chemistry from the University of Colorado (Colorado Springs – s/0  UCCS Cougars). I’m married to a civil engineer (emphasis on civil), he’s also very patient; and I am Mom to a grown son and daughter. No grandchildren yet, but I’ve promised a hefty sum to the kid that comes through first. The professional engineer (PE) and I now live in the burbs west of Denver in a wonderful house, with the world’s best dog, a yellow lab/golden retriever mix named Trip. I work for the government, in a job that makes cat herders and contractors pity me.

Last year at this time I was looking forward to summer vacations of whitewater rafting and camping, and weekends of kayaking and hiking with Trip and PE.  Work had kept me in DC and him traveling the west for long periods over the previous two years and we were finally both at home for the foreseeable future.  River permits, check; planned meet-ups with friends, check, plans to see family, check; 6 month follow-up mammo in June before we get going with the summer fun, checkmate!

First the mammo, after that, not one but two, needle biopsies.  When I went in for the post-mammo biopsy, the radiologist at my imaging center HQ was concerned about a different area on the films and biopsied that location instead.  Results came back positive for atypical ductal hyperplasia (ADH), meaning they wanted to biopsy the area I was sent in for in the first place.  Next biopsy 10 days later – ductal carcinoma in-situ (DCIS) found this time.  And I enter the breast cancer world at Stage 0. This process took up all of June 2012. But  July was next.

The bright spot of my breast cancer is that I went into it having a surgeon I really trusted, who also specialized in breast surgery. At my first appointment she gave me a bag of information to keep and a loaner copy of Dr. Susan Love’s Breast Book.  Surgery was scheduled at the end of July, but I filled the month learning everythig there was to know about breasts, breast cancer, DCIS AND with the relentless string of appointments with new doctors we all remember. Before this all started I was between primary care physicians (PCPs); I went from 0 doctors to 5 doctors, overnight. I still marvel when I say my medical oncologist, my radiation oncologist – I feel like I am talking about someone else, I couldn’t possibly have oncologists!

Surgery day – July 24, 2012.  It was outpatient surgery done at a very nice medical center close to where I live.  (All of my doctors practice out of there – making record-sharing much easier.) Surgery was quick, even though she had to excise tissue from both areas IDed by pathology. I was home by 3:00 p.m. I have become increasingly susceptible to effects from anesthesia, especially nausea for days afterwards. I was pretty sick and needed meds to stop throwing up.  Two days later my beloved surgeon, Dr. W, called me and at first I assumed it was to see how the nausea was.  Next thing was starting radiation.  I was already looking beyond to the next treatment. I’m feeling alot better, I said, how are you? AWKWARD PAUSE. I got the pathology report and…

Ummm, I have some crappy news, actually it’s really crappy news – we found invasive cancer. 

Eight months later and it still makes my blood turn cold.  I don’t even know what I said out loud, all I remember is a loud fizzing sound in my head, and the sound of my husband sobbing in the next room.  I tried to get it together, become the strong informed patient, but all I heard were the words echoing – invasive cancer, crappy news. really crappy news, invasive cancer. I really don’t know what I said, I do remember her telling me to pick up the path report from her office (she was out of  town) and come in to discuss the results next week. I memorized that report, I downloaded a manual on performing breast tissue biopsies so I could understand what every word in my pathology report meant. I learned from the path report that the tumor was 1.8 cm (w/ positive margins), and was located at the site the second radiologist was concerned about.  Even Dr. W’s notes say – very unusual to find undiagnosed tumor. I use July 28, 2012 as my cancerversary, the day I learned I had invasive breast cancer, the day I actually felt my world shift under my feet, the day when everything changed. Oh and by the way almost all margins were positive soooo..

Next up – surgery #2.  August 4 – re-excision and sentinel node biopsy (SNB). Outpatient again, one visit to a plastic surgeon and I knew I wanted to do anything I could to save my breast. I had been very close to deciding on a double mastectomy, but the visit, looking at patient outcome pictures there and on the internet, learning more about lumpectomy-maatectomy survival rates (no difference) made me reverse and go for as many lumpectomies as I needed. This surgery was longer and I got much sicker.  Results two days later – negative SNB (good news) and positive margins again – they kept finding more DCIS. With negative nodes.  a tumor sample was sent to Genentech to perform the OncoTypeDX genetic analysis. With positive margins – I was sent back to surgery.

Surgery #3 – short and sweet. Still sick afterwards, but not so bad. Results come back a few days later, more ADH and atypical lobular hyperplasia (ADH) and close-enough margins, meaning less than recommended but nothing some extra radiation can’t take care of. The only thing left now was to wait for the OncoType DX results.  This was the most agonizing wait of all.  It was mid-August and I had been waiting on either procedures or results since the beginning of June. Now I had at least another week to wait, and it was a bleak and lonely time for me. I was in the pits of despair and I did not want to interact with anything, not husband, not family, not reality…I just kind of existed. Losing myself in the internet, but only stalking, lurking everywhere I could to get information, to find people who understood, to read other womens’ stories. I really connected and disconnected at the same time.

Finally the OncoType DX results came back August 22.. The recurrence score was 19 – not high, but not low, either.  The intermediate is recurrence scores between 17 and 31. The tumor was estrogen receptor-positive, progesterone receptor-negative, HER2/neu negative. So on August 22, 2012 my long summer of breast cancer diagnosis came to a close. I start with ADH and DCIS and end up with Stage1c breast cancer.

Next stop the autumn of treatment. My doctors felt radiation therapy and monitoring would be the best treatment and chemotherapy was not recommended. So I started 35 rounds of radiation that lasted from September 15 until November 2.  But that’s enough for now.

All in all….what a long, strange trip it’s been!

Thanks for reading, more to follow.

Jane

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