Carrie Hill carrie journey

First post: Oct 30, 2018 Latest post: May 28, 2020

2020 Greeting: 
As of today, April 7, 2020, I will be updating about my second battle with metastatic triple negative breast cancer.  In October 2018, I entered my breast cancer journey at Stage III A (the only cancer detected in my body was in multiple right axillary (near arm pit) lymph nodes that metastasized from the right breast. One of the rare issues of my cancer is that there was never any cancer detected in either breast. It's called "cancer of the unknown primary".  How did we know for sure that is was breast cancer then? Because the biopsy of the tissue that had cancerous cells in the lymph nodes were consistent with breast cancer. Couple that with the fact that the type of breast cancer was triple negative which is a rare and aggressive form and you see that my cancer presented itself as a a bit of a beast. Important to note is that most breast cancers have a hormone component to factor in....triple negative means no hormone involvement treatment options look very different by type of cancer. I had 16 rounds of IV Chemo, surgery to  remove 12 right axillary lymph nodes (which were completely cancer free at surgery, which meant the chemo did it's job), because there was no cancer found in my breasts there was no need to remove anything there, then we followed up with 28 radiation treatments to the right breast and axillary area. Genetic testing of 7 markers for different types of cancers were all negative and there is no history of breast cancer in my family. I experienced neuropathy issues from Chemo and arm range of motion issues following the lymph node surgery and both were treated with physical therapy. All cancer related treatment was complete as of August 12, 2019. 

From August 2019 through February 2020, I developed lymphedema of the right torso and arm and began physical therapy (which ended early due to COVID-19) but thankfully treatment included an at-home medical device that treats lymphedema. I also began "seeing stars" in my right eye. It would get worse when I worked out (yup, was actually going to a gym). I spoke to my PCP and my oncologist about my vision disturbances and they both said "sounds like ocular migraines" and recommended seeing an eye doctor. I don't have contacts or wear glasses or have any eye issues so I found a doctor based on my "vast medical common sense" telling me that this could be a neurological issue and so I found a "Neuro-Opthalmologist" at Dean McGee. That was not the type of doctor I needed to see. He gave me an eye exam and said you are good and shouldn't need to come back for like two years. I messaged my PCP and asked what to do next. The vision disturbances were getting worse and more frequent. She sent me to a WONDERFUL retina specialist, Dr. Srouji of Oklahoma Retina, PLLC. He got me in immediately, found that I had a retinal tear and treated it with laser surgery that day in the office (December 2, 2019). He was so caring and the staff there is amazing. By mid to the end of January, the eye disturbances got worse and more frequent, and I started to have a vision cut in one area of my right eye (a blind spot basically). I also had debilitating headaches frequently. Of course these are symptoms of "ocular migraines" that two doctors suggested might be happening. On February 26, I went back to Dr. Srouji in hopes that I had another retinal tear (that would have been the best case scenario, for real). He found no tearing at all and ran additional tests to check the blood flow and pressure of my occipital nerve (keep in mind this is only from the back of the eye to the front, it does not look into the brain itself) and everything looked good. He comforted me and very thoughtfully explained what I needed next. He immediately got into contact with my PCP to have a CT of the brain scheduled the next morning at 8am. On February 27 by 9:30am, my PCP called to let me know that the CT showed something present and that I would have a brain MRI that evening. The results of the brain MRI were shared with me late in the evening and it was not good. I had a 4cm lesion/mass (they mean the same) on my left occipital lobe (which is why my right eye was affected) AND there were 2 additional suspicious areas that needed further investigation. Since then, I have had several diagnostic tests, and we now know that I have leptomeningeal disease. My first post this evening will be all about how to understand this disease. It has taken me a couple of weeks to fully understand it. Thank you for reading, and thank you for your prayers! I love you all! XOXOXO

2018 Greeting: 
Welcome to Carrie Cook Hill's Caring Bridge website. We are using it to keep family and friends updated in one place. We appreciate your prayers, support, and words of hope and encouragement. Thank you for visiting.