My doctor still remains optimistic going forward into a clinical trial. He stressed that there have already been good results coming from the CAR T-cell project in other countries and even in the US they have been successful using this technique with other cancers. However, the risks are still very real including neurological problems, cytokine release syndrome (which results in very high fevers and possible death), and it would mean I'd be monitored like a lab rat for the rest of my life essentially.
I wish having cancer was this cool...lol!
There is also the slight possibility that I may not even be eligible yet for the trial as it was a very small progression, and my estrogen levels may not be where they need to be yet since I only just restarted the hormonal therapy. However, I should be hearing from NIH at some point by Thursday to set up a consultation appointment to discuss what the general timeline looks like. If all goes well, I could be starting the trial by the start of January...which means I'll probably be doing testing (including my third bone marrow biopsy) over the holidays...yay. My doctor has already decided to take me off the current chemotherapy I was on since I need to be off any treatment for about 3 weeks before starting a clinical trial. This could result in a major progression of my cancer...which I'm seriously not thrilled about.
After I called to inform my parents of the news I decided to shut my phone off and go see a movie. I needed to focus on something that was not cancer-related. After that, I found myself just roaming around without a thought going through my mind. I found I just didn't care or have the motivation to do just about anything. I also just needed to be alone...and I was ok with it.
This morning, however, I find myself picking up the pieces slowly and trying to absorb the shock that I already sensed was coming. It's not like going into a transplant would have been preferable either...both options have pros and cons and both are extremely risky. So going into this clinical trial I need to rechannel my brain to focus solely on the pros. The first being, a shorter recovery period. The entire process can be done within a month's time. Since it's through NIH, I'll be monitored by the top specialists in the country. I won't have to lose my hair (at least I don't think I will...I could be wrong). Those are just a few to list.
So yeah....not the best update in the world....but I saw it coming. Some people will be like "I told you so" or "It's your own fault for going travelling"...but you know what...if you really knew me, you would know I was in no state of mind to take on ANY risky procedure before going to France. I wanted to spend time with family (especially family I hadn't seen in over 10 years). I needed to get away. I was getting tired of constantly sitting on the sidelines watching life go by and letting cancer dictate what I was supposed to do. So instead I made 2017 my own. I made new friends. I took part in the historic Women's March. I learned more about history and read more books. I travelled both to Europe and to the Caribbean through the help of AMAZING and LOVING friends. I made dreams come true. I learned more about my family and spent time with them. Despite the end result, I was in a temporary remission for a small period of time...something I never thought would happen this year and maybe wouldn't have happened had I chosen not to do chemo over radiation. So yes...the end of the year gave me a disappointment but I honestly wouldn't change a damn thing about it.
Now that I'm in the process of picking myself up again, I can now focus on what I need to do this next month. I'll be posting more updates as I learn more about what is to come and walk you through every moment! Thank you to all who have been by my side since the beginning and who continue to support me through this very trying time. I love you all.
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