In September of 2015 I was diagnosed with Stage 2a Triple Negative Breast Cancer. I had a lumpectomy and node removal (it didn't spread!) and found out I was BRCA-. That same month I started IV chemo - AC and Taxol. In February of 2016 I started radiation and ended in April of 2016. I was a survivor!!
Then in September of 2016 headaches that I had had spread to double vision. My medical oncologist from Scranton sent me for a Brain MRI. That was Wednesday afternoon. The next AM my oncologist called and said she had spoken to head of Neurosurgery at University of Penn and they were expecting me ASAP. The next day (Sept 8th) Rob drove me to Penn. They immediately hooked me up to an IV and sent me up to ICU. I had brain swelling they had to reduce so they put me on 4 days of IV steroids to help.
On September 12th they did major brain surgery. I had a tumor and fluid in the frontal lobe of my brain. And apparently it was so severe that if they hadn't sent me down. i would have died. What a pill to swallow. They also found out that the cancer that spread to the brain was the breast cancer but ER+!!! Triple Negative on my breast but ER+ on my brain? Everyone, doctors included, were dumbfounded. ON A FUNNY NOTE: After surgery I swore they had taken my tooth out and begged Rob to look. he did and of course my tooth was there. I also argued with the nurse about having to go the bathroom despite her assuring me I had a catheter. Lets just say my first day of healing was embarrassing for me and funny for them and those around me!
After I went home, I had to come back in October for Gammaknife. But when they did the MRI to finalize my treatment they found an inoperable tumor in my PONS. So they chose to Gammaknife that tumor and two weeks later i came back for Cyberknife of the remainder of the frontal lobe tumor site. The surgeon got as much as he could but some of the tumor was embedded in my brain so deeply it wasn't safe for him to operate further. But the Cyberknife and Gammaknife worked and the tumors were "frozen". Gammaknife and Cyberknife are high dose specific radiation.
Then things were good until January 2017... I had a bone scan and they found cancer in my bones. So that means I have TN Breast Cancer. Brain Metastisis and Bone Metastisis. So I underwent 2 rounds (about 10 days) of radiation on my hip and pelvis - mainly because the pain was unbelievably extreme and the radiation cured that while killing the cancer. Then they started me on Oral Chemo. I did that for several months. In the meantime my right eye started to show double vision. I approached my neurologist about it and they thought it was the migraine medicine they were trying me on. I should mention in April I had migraines tat were 24/7 and were sometimes so intense i couldn't cry (because of the pain) and i couldn't open my eyes or move. so they let the eye go. (I now realize what a terrible neuro I had because my eye only got worse and until i saw a local Ophthalmologist after the prodding of Rob and my friend) now since May I have been wearing an eye patch and haven't been able to drive. Awesome. It totally sucks. They also found through tests that the Oral Chemo was not working so they took me off of it. So I'm full of cancer and on nothing yet. (This was in May of 2017)
In July of 2017 my friend drove me to to a local Ophthalmologist and he said my 3rd,5th and 6th nerves were not responding. That mean my forehead was totally numb, my eyelid was drooping and my eye wouldn't move left or right or respond to light. He immediately got me in contact with the head of Neuro Ophthalmology at U of Penn. That Dr saw me and sent me for a brain MRI. He found that in my brain sinuses I had more cancer. He sent me to my Penn Radiation Oncologist and she scheduled me for more Cyberknife. I completed that in 5 days and that was 3 weeks ago. Since then my numbness is improving, my eye moves left to right, my eye lid has raised and my pupil responds to light!!! The next thing is my eye needs to go back (visually) to normal. I need to see again and drive. If it doesn't after the radiation is done working, we are going to Wills Eye Hospital and starting a process with them.
In August of 2017 they put me on new IV chemo - Gemzar and Carboplatin. My body didn't respond well to the strong drugs so I had to miss two treatments (very scary) and I receive an Xgeva shot (once monthly) and a Neulasta shot (after every chemo). They also had to switch me from a cycle of two weeks of treatments then one off; to one week of treatment on and one week of treatment off. So far so good! The Neulasta hurts intensely and lasts 2-3 days. It makes your whole body feel like the flu while making all of your bones and muscles hurt. But it builds white blood cells so.... I have to do it. Xgeva helps the bones heal faster than normal (because of the Bone Mets) and that hurts as well but its doing its job - I tell myself that through it all. Just deal with the pain because the pain means its working.
I am a mom of 2 amazingly kind and loving kids (7 and 10), a wife to my best friend of 17 years, a gardener (before the cancer but will be again!), a knitter, a reader. hiker and I love cuddling on the couch with the kids and watching some good TV.
I work hard to try and keep things normal. Sometimes the pain or exhaustion is too much and my husband has had to help me (like lifting me into a bathtub to help the thigh pain and let me sit there forever on our " romantic week " which turned out to be more of a pain control for me and not a lot of fun.) I do want to say... the weekend didn't turn out as we had hoped, but it showed me how much my husband truly cares about me.
The odds are against me. I have metastisis. And it spread to two places and several locations. But Im responding well to all the treatments, medications and shots. I will continue to live and fight like I will be here until Im 80. Im not giving up without a fight. I still have hopes of Rob and I driving in an RV across the country and seeing all the sunsets from PA to CA. Love, Healing, Hope and Good Health to you all!
This year, I registered for the Komen Race for the Cure because I wanted to take action and be More Than Pink™. I want to make an impact in the fight against breast cancer and need your help. Please consider making a tax-deductible donation today in support of my fundraising efforts.
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