My GCT Granulosa Cell Tumor Journey

So I've made it through 5 infusions, or through 3a if you will. I'm *almost* halfway through. I've always been a little bit delayed with my emotional response. But yesterday, it finally came to a head. I felt at work they were possibly trying to use my illness /increase in working from home as a way to push me out. I've been fighting a ton with my boyfriend. I tried listening to "rid negativity Reiki music" and "higher frequency music" even to try to break up the bad energy. I remembered a friend telling me Christian music helped her. I was amazed to discover how much it calmed me down. I had a sudden urge to finally go to church again. I though I was ready to finally "have it out with God" and confront all my feelings even though it's obvious who wins every time. I found a Wednesday evening service in Harlem and decided to go for it. It was a small service, and the pastor was wonderful. She prayed with me, and I finally let it out. ...

From my first surgery I got DVT in my left arm- deep vein thrombosis, aka blood clot. So my right arm only is available for blood draws. I've been phobic of needles my whole life. I know most people don't like needles, but....my level is a little more extreme. I cry at the thought of an IV line, and while hospitalized for surgery had so much anxiety over every blood draw. So it was suggested I get a port, a small disc with half a plastic rubber ball on top that is connected to my veins. This way they can infuse for chemo through it and also draw blood through it. Only thing is there is a bulge that you can see. I wanted to get a picc line which is put in the upper arm and in my opinion way cuter. But my doctor said it wasn't an option for me given I'm already prone to blood clots, infections etc and the picc line requires daily care. So about 10 days after my oophorectomies and hysterectomy, I had another surgery for my port. They said they put me under light...

I had my first chemo session on Friday 1/11/19. I thought it was fitting with so many 1's in the date. I have a very low pain threshold and was freaked out about my port being accessed. I'll write about the port in another post later. So my first session was Abraxane + Carboplatin. I'm supposed to alternate every 10 days with this regime and then Abraxane only. I was pleasantly surprised that putting on the emla cream 1 hour before your port is accessed really works! But you can't put it on sparingly. Need to put a big dollop and then saran wrap over it bc it evaporates over the hour. In any case the chemo itself was very unremarkable. There were some pre-meds which took a while. Steroids (I hate- dekadrone), benadryl, Zofran,  and pepcid. I felt tired afterwards, but that could have been from sitting and doing nothing for 4 hours. I also took chocolate edibles which I feel really help. The next evening and the evening after that, so t+1 and t+2, I felt mildl...

12.21.18 I've been trying to find a blog or some support groups for this rare disease. I wasn't able to so I decided to create my own. I'm very curious to see if people will find me through this. I'd love for it to be a way to exchange and support with others. A bit about me. 40 year old female living in nyc. When I first got my diagnosis, I was so confused. As a New Yorker the only GCT I know is Grand Central Terminal, a large train station. So what is GCT? My basic understanding is it is a rare type of sex cord stromal ovarian cancer. Ovarian cancer itself is rare, making up 3% of cancers. GCT is 2% of that 3%. The main ovarian cancer most people have heard of falls into epithelial. The mortality prognosis for GCT is fairly good. The problem is it is a recurrent rare disease so there's not a lot of data on how to treat it, and it often recurs. So I may be dealing with this as often as every year to every few years. More in-depth info here:  https://www.goog...