I'm so sorry for the delay in writing a post. I posted an update after my last scan via video on my Facebook but I know not everyone uses that platform. I had radiation for a tumor in my back muscle in September and I was hoping that I would be out of pain. The radiation went smoothly although I was so exhausted most days and had to rest a lot. I had a scan in early September and it seemed to confirm that things were stable. I spent September resting a lot and enjoying just taking care of myself and the kids. After the t-cell transplant, traveling and radiation, I was just spent. Taylor and I cooked a lot and I enjoyed the simplicity of a daily routine.
I had a scan this week and on the day of the scan, the doctor pulled up the images and gave me a thumbs-up that things continue to look stable. I was starting to get used to some good news! I came home after the scan and told the kids the news. The following day, Dr. Agulnik from the City of Hope called and he had news that was very different from the day before. Unfortunately, oncologists don't read scans well and in August he misread the scan and got me nervous and scared, this time he said everything was stable. Both times he was wrong. Every time I get news of cancer growth, I feel like I've been punched in the gut. I don't want to use the word "bad" news versus "good news" because that very morning when I woke up it dawned on me that there are no bad or good experiences, we just have experiences. We tend to label things and when we do, we discount the beauty in all experiences. I may not like hearing that cancer is growing and I have a bunch of emotions that follow that news, but all emotions are amazing and so what if I cry for a day? It is real and acknowledges my pain and on the flip side, when I come out of expressing that pain, I feel such hope and inspiration flowing through me. It's like weathering a storm on the ocean and enjoying the fact that not only did you survive, you have renewed hope and appreciation for when things are calm. Enjoy the calm when you have it in your life because a storm is always coming. That's life. We were not born with a promise that life would be stress-free and challenge-free. The Bible is full of advice about how to weather the storms (faith), and all religions talk about challenges in life. The news was that several tumors have grown and one mystery tumor doubled in size. The mystery tumor is why I'm still in pain in my right shoulder. It turns out that the radiologist missed noting that I had a second tumor in my back on the official report on every scan including this week's scan. This mystery tumor is only a few inches above the one they radiated last month. Apparently, it was 1.2 cm two months ago, and now it's 2.4cm. I'm really confused honestly how a radiologist missed noting that tumor on the last three scans, and how two oncologists and the radiologist performing the radiation also missed seeing it. At least Dr. Agulnik found it when he was looking at my scan. The pain has been annoying and frustrating, especially in my shoulder. Had they seen that tumor, I could have had radiation on it along with the other tumor and I would have been out of pain. These are the frustrating moments in the cancer journey. Even the experts miss things. You can imagine my surprise when the doctor told me about the mystery tumor but at least now I can head back in soon and start radiation on that tumor. I'm also going to find out if they can radiate one of the lung tumors that also doubled in size. I also have two tumors near my heart that grew slightly but they are in a risky spot to radiate. Of course, I'm bummed to find out that numerous nodules/tumors grew. Some grew slightly and a few almost doubled in size. Now it's time for radiation and a new study. I have a second opinion scheduled with Dr. Singh this Wednesday and I'm reaching out to the radiation Doctor tomorrow to get an appointment. Dr. Agulnik at the City of Hope is meeting with the tumor board to see if he can get me a spot in a study that is closed and to see if I qualify for another study they have. It sure was nice to have calm in my life for several months but the winds have picked up and it's time to head back into braving the high seas. I want it to be known that I am not fighting cancer, I'm fighting to live. If and when my body says enough, I trust that God was a part of me living and surviving just as God will be the one who says it's time to come home. I told my kids that I do not want it said after I pass away that I "lost the fight" because I did not lose. First, it's not lost on me that I am already a walking, living miracle. I have lived valiantly for 5.4 years with cancer and I had it for two years prior to my diagnosis. I have lived with over 50 nodules in my lungs for over 4 years and I have not seen one person in my Synovial Sarcoma group that has had that many tumors. I have watched many cancer warriors pass away in a lot less time with only a few tumors. I don't know why God has kept me going but I'm grateful for every moment I have here. I do everything to help God by taking great care of myself and valuing every moment I have. I never take anything for granted. Second, I won't lose when I leave this earth because my soul will live on. I will visit my loved ones from beyond, probably as a butterfly since I love how butterflies represent transformation! I'm not going anywhere soon though, since I still have a lot of life left in me and I think God has work for me to do.
Much love and gratitude! Blessings.....
Denise
