I have had trouble writing & updating my blog. The months of August - November were rough emotionally and physically for our household.
First I have updated my Treatment Page with all my procedures & most important all my treatment and herbal supplementation I have been using (started supplements again 10/2015).
In August, a close breast cancer friend passed away, she was only 34. She was my first friend or cancer buddy to die from this disease. That same day my Uncle Hank passed away, he was only 54 and was struggling with lung disease. Both of these people were vibrant and would draw people in because their auras were so bright. Yet both of them were gone so young. These two blows hurt. Both left behind amazing families and spouses that I love so very much.
The one that hurt the most was when my Aunt Kerry passed away. I can't really even write about this yet. She was a best friend of mine, a second mom, my godmother, my aunt, my friend, and my first cancer sister. She died after battling metastatic Ovarian Cancer for 6yrs. My Uncle now lost his best friend & there has not been a day that has gone by when I worry about my Uncle.
In the midst of all of these losses, I learned that I had developed Hypothyroidism from the clinical trial for Lucitanib. The lack of thyroid hormone made me crazy, bloated, and emotionally unstable. My hair was also shedding and creating nests in our home. The stress on my body from the trial drug and the losses were starting to show in my physical appearance.
I also learned that my Pleural Metastasis, which I have had since my cancer recurred in the metastatic setting in 7/2013, was more extensive and was unable to be seen well on any scans. My Pleura was a hard shell, capitulating my lung, and causing the chronic pleural effusions. I was sent to a Oncological Thoracic Surgeon to consult to have my lung fixed.
I underwent VATS surgery on 9/30/15. They were unable to inflate my lung in surgery, learning my lung and chest cavity were coated with cancer. A PleurX Catheter was placed in my left lung cavity & I had a tube in my left rib cage. I was devastated. I also learned that the trial was not removing the cancer, but keeping me stable with a compromised lung.
We did biopsies of that tissue and sent it to Prescion Medicine to learn the mutations in my cancer & to see if I am eligible for anymore biologic or targeted therapies and trials. We also reviewed my Foundation One report that was done in 2013 on my breast tumor. We learned that I would be eligible for Ibrance (CDK Inhibitor) or trials with other CDK Inhibitors. We also learned I had a BRIP1 mutation, which is BRCA1 variant, therefore I am eligible for trials with a PARP Inhibitor, which is a very promising drug in the trial phases. It was a lot to take in. We also learned that I needed to get on Chemotherapy... talk about a giant glob of information. My doctor was leaning towards either a PARP Trial or oral Chemotherapy.
When I got all that information about my cancer, I was having to get a visiting nurse come 3x week to drain off my lung. Since the trial did nothing to improve my well-being and cancer, I was taken off the trial & put on oral Chemotherapy called Xeloda. I currently take Xeloda 1,500mg 3x daily. So far Xeloda has cleared out my lung cavity and the pleural effusion is gone. I have been blessed with cracked and peeling hands, cystic acne, fatigue, achy muscles, digestive changes and nausea, because of Xeloda.
Eventually I got used to the PleurX & was able to visibly see that this Xeloda drug was working with the less fluid draining. Thanks to Xeloda, I had the Lung Drain from 9/30/15-12/4/15. It could have been longer, but my treatment was working. My tumor markers plummeted, which has never happened. They are currently 67.5, when they have always wavered between 160-250. Despite side effects of fatigue, nausea, muscle aches, and Hand Foot Syndrome, its worth it if its killing my cancer.
Things did get better & I feel like they are still improving.
We got engaged.
We went to Disney. I rocked the trip with my PleurX Drain.
My cancer is retreating for now. The tube is gone.
I updated my blog & my TREATMENT PAGE.
I was able to take my herbal supplements again.
I am returning back to work after the longest 8months of my life.
We are planning a wedding.
The holidays were excellent, but I missed my friends who passed and my family who passed this summer.
I could get to No Evidence of Disease. I hope I do. I could recur. This is what life is going to be like for me. I probably will update this less. I want to spend time living and not always writing about cancer. I want to update this just to help someone who needs to know some information about cancer & that they are not alone. I have found an online support group of women under 40 diagnosed with Metastatic Breast Cancer & I now moderate a group. This past week our group lost four girls, two of whom I was very close to and I felt another emotional blow. Losses before the holidays are not pleasant. Neither of these women were older than 35.
It is time for a cure. I am tired of just taking drugs with horrible side effects to prolong my life & not save it. I just hope I get to see the day when cancer is easily treated and we have stage 4 survivors who have lived 20+yrs as the norm.
Luckily, I have been blessed with an amazing in-person familial and friend support network (Kyle has been my biggest support). My goal is to grow old with Kyle and watch us get wrinkles and have fur babies and watch our frozen embryos become babies. Its all I ask.
