Thursday, September 29, 2011

"Cancer is not a ribbon, a screening test, or a leisure activity. It is not a sassy t-shirt, a proclamation of survivorship, or a gift worth giving. It is a disease. For 65 percent of those who are diagnosed, it will be the eventual cause of death. When we ignore reality in exchange for feel-good fund-raising activities, we alienate and forsake those for whom cancer is a major cause of suffering." -Gayle Sulik, author, "Pink Ribbon Blues"

Saturday, September 10, 2011

I've been delayed two more times since my last post. My platelets were still too low even after I had another blood transfusion. I saw Dr. Smiljanic at Lion's Gate on Tuesday and Friday. He was given permission from the Special Access people to change up the protocol schedule as needed. So I will only be going once a week from now on; I will have a Day 1 and Day 8 and I won't be starting Day 1 until next Friday. Sucks because it always seems like I can "feel" the cancer getting worse whenever I'm delayed so that's pretty stressful. But I'm trying to enjoy the extra time off feeling well.
I've recently learned that I'm not technically Stage IV. Basically, you stay the same stage as you were at diagnosis and then you add to it. So I have Stage 3 TNBC that has metastasized (which means it has spread). Doesn't really mean anything different I just thought it was interesting that I learned something new when I thought I was already an expert on the subject ;)

I think I wrote about this before but...I always have people asking me how much longer I will be doing this chemo. Basically, I will doing this chemo for as long as it works or as long as my body can tolerate it. I just talked to another woman (online) who has done 10 cycles of this chemo/parp and just got a clear pet scan. Her doctor told her to stay on it for as long as she can. When I'm in the middle of the chemotherapy weeks and feeling awful, the thought of this is overwhelming. However, when I'm feeling better on my off weeks, it is much easier to accept.

We were able to get away twice on my weeks off (off chemo) this summer. Kathy's dad let us stay at his place in Whistler for a few days and we went to Birkenhead Lake with our friends Nadine and Mike. We all had a great time at both places so that was really nice.

You probably noticed that I've added the "count-up" button since my cancer diagnosis. I saw it on someone elses blog and she is at like 1400 days so I thought it was kind of cool.... I guess someone else will have to stop it if I die; ok, that's kind of weird.... oh well, I'm keeping it anyway. LOL