This blog, started in August 2015, is dedicated to my journey with metaplastic breast cancer, and to sharing how I continue living without my beloved husband Steve who was murdered on October 5th, 2015. In essence, it is a spiritual journey whose insights apply to all of us, regardless of our circumstances.
During a routine early detection examination in October 2014, a tiny spot was found on my ultrasound images. I had a core needle biopsy and results came back benign. Six weeks later, by the time Steve and I moved to Costa Rica, a large lump had grown in the place of the biopsy.
At the earliest possible time, I saw a breast oncologist in San Jose, Dr HB. He performed a second biopsy, cutting out the entire lump. Again, the results came back benign. Two months later, yet another lump had grown. This time with skin infiltration. It was very painful. Ultrasound examination revealed a hematoma. I treated it accordingly. It did not disappear. It was not a hematoma.
My next appointment in May with Dr HB led to another core needle biopsy. Results: benign. I was prescribed another ointment, Bepanthene for external wound healing. The symptoms of intense pain in the breast and heart continued. My sleep was disturbed and I was getting anxious.
Steve and I then traveled to the USA to teach in NY, followed by a visit to my ailing father and family in Germany. There, while I enjoyed every moment, I experienced the most intense pain and the lump grew. Couldn’t sleep, couldn’t sit comfortably. So I went to see my sister’s gynecologist. Blood tests and ultrasound exam revealed nothing new – benign. I contacted Dr HB in Costa Rica, and he recommended I begin using Lansinoh ointment, to soften the skin.
The growth and pain continued.
Finally, I returned to Costa Rica and went to see Dr HB again. On July 16th, he performed a surgery with general anesthetic to remove the entire lump and reshape my breast. The pain was gone. The new breast looked great. They suspected a serious bacterial infection, or a fungus. Living in Costa Rica, everything is possible!
The shocker came at my next visit to Dr HB. Without a warning, after removing the stitches and telling me pleasantly how nicely my wound was healing, he informed me that unfortunately, the pathology diagnosis was malignant, that I have rare form of aggressive and advanced invasive breast cancer – triple negative metaplastic carcinoma. He proposed a treatment and sent me on my way. Without even so much as a handshake. Oh, and he asked for my forgiveness. Right.
I felt like a little bird who just flew full speed into a glass wall. Steve immediately traveled the five hours from Montezuma to San José where the doctor’s offices are located. We decided that it was best for me to go back to the US, take all my biopsy tissue samples with me and get a second opinion.
I arrived back in the US on Saturday, August 1st. I underwent a variety of other medical tests. The tissue samples were reanalyzed here. The very first biopsy in October 2014 was correctly diagnosed as benign. The first two done in Costa Rica showed evidence of cancer; meaning that the pathology team in Costa Rica gave not one but two misdiagnoses!
The pathology team at UCSF reviewed the tissue sample from the third biopsy in Costa Rica, and it was confirmed that I have triple negative metaplastic breast cancer.
Then I had a breast MRI, diagnostic mammogram, ultrasound, blood tests, a PET/CT scan that determines if the cancer has spread to other parts of my body, a lymph node biopsy and a BRCA gene test.
I am so very happy to write that the PET/CT scan and lymph biopsy showed no cancer outside the breast. And the BRCA gene test came back negative.
My chemotherapy treatment began on August 20 with four cycles of Adriamycin /Cytoxin dense dose infusions, set two weeks apart. This is followed by 12 weeks of Taxol and Carboplatin infusions.
For the record, I chose the “traditional” medical model because everyone else I knew who went the “other” route is no longer alive, plus the cancer I have is very rare, aggressive and notoriously difficult to treat.
Oh yes, almost forgot – a small, smooth growth near one of the incisions on my breast kept my mind busy enough to have yet another needle biopsy on September 21st. The pathologist analyzed the tissue samples there and then, and informed me that he could not find any malignancy. Thank goodness.
After the chemotherapy treatment is complete, I will have a mastectomy, followed by 7 weeks of radiation.
This is life’s radical opportunity for me to meditate upon the fact that I am not my body. Who am I, really? We are all going to die some day. What is the part of “me” that will never die?
October 2015 Postscript. What is the part of Steve, indeed of all of us, that will never die? Steve was murdered on October 5th while hiking with our dog Coco on a popular hiking trail in Fairfax, Marin County. Coco was shot also but survived.
December 29, 2015. My last medical update of this post talks about the September biopsy being benign. Well, the cancer grew back, the chemotherapy proved ineffective, yet another biopsy confirmed malignancy. And another PET/CT scan confirmed that the cancer stayed local in the breast. I had a mastectomy on December 15th, and am now cancer free. However, treatment will continue in early 2016 with radiation and a different chemotherapy, to reduce the risk of recurrence.
Coco was returned to me on Christmas, after being in the veterinary hospital for almost three months, and undergoing several surgeries. She is doing well.
October 20, 2016. I continued with the different chemotherapy, had horrible side effects, ended all that on February 26th, the same day my mother died from breast cancer in 2007. Then I received 25 sessions of radiation that were completed on April 20th. After that I had to testify in court in the preliminary hearing of Steve’s murder case, and then I traveled to Germany, to be with my family, for a long rest and recharge. Finally, on August 26th I had total knee replacement surgery, followed by four 1/2 weeks of in-patient rehab.
Today I am beginning, at last, to feel better.