Since January my life has been a crazy rollercoaster ride in so many aspects. On the home front everyone is doing well. The kids are now fully aware of how dire and serious my cancer journey now is and we started seeing a family therapist that can help the kids come to grips with all of the things that come with having a terminally ill parent and also be there for them when my inevitable passing occurs. One of the things that stuck to me in one of our first meetings is that the therapist pointed out that the kids have had a sick mom for most of their lives! The kids blank stares and when they said that I have only been sick the past couple of years was one of my proudest moments. It was my main mission when I was diagnosed to give these kids the most “normal” life I could and to never make them feel like they had a sick mom. I am so happy that I accomplished this, and that this awful disease was not in the forefront of their youngest years. The first six months of this year have been so busy. As you can tell from my FB and Instagram posts our little soccer and cheerleading stars have kept us on our toes. I am so thankful that they have both found something that they love so much!
On the cancer side of my life things have been tough. I started a new treatment back in January. Lucky #13 it was supposed to be, and it was anything but that! This treatment knocked me out in so many ways. Stomach issues, extreme fatigue, and overall, it just took me a long time to recover after getting the med and then when I started to feel better it was time to get the chemo again! You can never tell how cruddy I was feeling though. I went to every cheer comp that there was and every soccer game that we could make it to and then would collapse into the couch or bed upon my return home! The upside of that medicine though was when my tumor markers started dropping- hundreds of points at a time leading us to believe that this medicine was attacking the cancer. Until my scans at the end of March. The scans showed that while this medicine did attack and shrink some of my existing tumors it did not stop several tumors from showing up. Shockingly many of the new tumors were in my bones. A spine covered in tumors and many other affected areas including innumerable lesions on my liver. How this is possible, and I am still standing is beyond me! This was a hard pill to swallow. At this doctor’s appointment we discussed the next options (which we are quickly running out of), life expectancy, hospice, and a clinical trial. Since I am not ready to give up, we decided to move forward with a Phase One clinical trial.
Before I could start, I needed to get a liver biopsy done. The recovery was tough, and I was down for a few days. We did the four week “wash out” allowing all the past chemo to get out of my body and we started this trial mid-April. The first couple of weeks I needed to be at DFCI for 6:30 Am and didn’t leave until 8:30 pm. I have reported to DFCI every week and have taken the pills and shots needed for this trial. A couple of weeks ago my bloodwork came back alarming. Since this is a trial and I am at the point in this journey where everything is on high alert, we moved my scans up to this past week. I was scanned on Tuesday and reported yesterday for the results.
Thankfully, right now this trial medicine is containing my cancer. No shrinkage but no growth either, which is good and considered stable. This is the first time in over two years that I have received some positive news after scans. I am very thankful right now because I also feel so good. I have not felt this good in over two years. I feel somewhat like my old self. My hair is growing back and growing all over! I have had to shave my whole face lately due to a new mustache and beard!!!
In September I was told that I have less than a year to live. In December I was told possibly 3-4 months unless we found a medicine that worked. I don’t know what my timeline looks like. I know this cancer is strong and I know my death is in the close future. I also know that today, right now, I feel alive and am alive, so I am going to make the best out of every day!