Well, where can I start. I am sorry it has been a few weeks since I have posted a blog. It has been, to say the least, a long few weeks. I have had a road with many bumps and even hills; however I have had some huge breakthroughs as well. I just finished my ninth chemo (I am currently going to chemo every week, mostly on Thursdays).
For those of you that may not fully understand where I am at in my treatment, I am participating in a clinical trial through the University Of Colorado. I will be in this trial for one year, as long as I am tolerating the drugs OK, my diagnosis does not progress or worsen, or if my doctor feels it is not benefitting me anymore to participate.
The two chemo drugs that I am taking are Taxol (every week), and a study chemo called TDM1. I get this chemo every three weeks along with the Taxol. This was picked randomly based on the timing that I joined the study. Some people are getting the TDM1 weekly. TDM1 is a breakthrough chemo that is hopefully going to “replace,” so to speak, Herceptin. It is not approved by the FDA; however, studies are showing that in most cases it is working even better then Herceptin in patients.
I am one of the participants in the study that is unfortunately farther along in their stage of Breast Cancer so my doctor was very hopeful that this chemo is going to help me. They are just not many cases to compare it too. They are very excited about it.
So, I started the study about two months ago after being in remission since May. In August, I found out that the cancer came back again in my liver. I get PET scans every two months along with various blood work, Muga scans (heart tests), and bone scans. My last PET scan was in August right before starting the trial, which showed the tumors in my liver. I had my first PET scan done a few weeks ago since being in the study and it showed that the spots in my liver are gone again and my tumors marker are showing that I do not have any active tumors as of right now!
This was HUGE news because I have only been on this trial for two months and it is working extremely well. My doctor was thrilled. So, as I understand it, I am technically in remission again due to the fact that I have no active tumors. I know it gets confusing, so I try so hard to be super simple and clear.
My scan did show a possible bone metastasis. It is in my spine right around T7. The doctor thinks that it was possibly there, but so tiny that it did not show up on the scan. It does not look super serious or active at this time, but they suspect that it may have spread to my bones. This does not mean much for the treatment I am currently receiving, or change anything except that I will start another infusion for my bones that will add more calcium and other “good” things.
I am so happy and excited to be clear for a couple months. Especially with the holidays and the beginning of the year coming, it is nice to not have to worry about my health and I am able to enjoy my family and friends and spend the holidays with all my loved ones.
My birthday is coming up on December 18. I will be turning 28. I am also coming up on my three-year original diagnosis anniversary on January 20, as well as my most recent diagnosis of the liver (it will be one year in February). I am finding that I am living my life in a timeline. Three years ago when I was diagnosed I was given a five- to seven-year window, based on most studies of women with my same diagnosis. In February of this year, I was given weeks to two years, again based on most studies.
I am coming up on the first year since that. I have been trying to make “to do lists” of the stuff I want to get done: painting Abbey’s room, getting her in school, setting up bank accounts for her and my medical needs, planning the future if I am gone, etc. The thing is, I did not even realize that I was doing this. I have been so positive and trying to have GREAT days and living my life. But really I have been living my life based on this timeline. I noticed that I started thinking, “OK, I have one year left. What do I need to get done?” That is not healthy and I cannot live that way. I do not believe in my heart that I am going to die. I truly believe that I am in the best hands that I can be in with my doctors and GOD.
My goal for the next couple months is to try to learn how to let go of that and try to really live not in fear. The fact that I got a good PET scan is the start to this ‘”new change” and I could not have asked for a better gift for the holidays or for the new year. (Click here for part two.)
Read “What Happened to Abbey’s Mom.”
Read Nicole’s first blog post.
Read Nicole’s second blog post.
Read Nicole’s third blog post.
Read Nicole’s fourth blog post.