Just a little continuation of the Desmoid tumor drama...
We went to Mayo on March 1 for my third and final steroid injection for the Desmoid tumors. It was another smooth, although a bit painful, injection with a new radiologist. He, too, is part of the team who is working on this clinical trial. I had no idea, and in this moment, I can not for the life of me recall his name. Anyway, he was very kind, encouraging, and had an excellent bedside manner. The sonographer was the same one I had had for injection #2, and she was also kind, familiar, and comforting. From this point forward, there will be no more injections. Only waiting, and biannual scans for the next two years.
Let's rewind though. Our first appointment that day was with my oncologist, Dr. Attia. I hadn't seen him since our original consultation back in November. He only has clinic hours on certain days, and our paths just haven't crossed. If you remember, I had a baseline MRI done back in December because the radiologist feared I had three tumors instead of one, which was accurate. That MRI also showed some lesions on my liver, which the orthopedic doctor mentioned, but was not concerned about. Well, Dr. Attia had a completely different vantage point. (These lesions have been present for quite some time, but no one had been concerned about them in Orlando either.)
When he walked into the room, his research nurse and I were discussing the cost of my MRI. He sat down and immediately asked what we were talking about, and then followed it up with, "Well, you're going to need another MRI." My response was, "Yes, of course, in June, right?" But no. He said I needed one soon. He then asked me if I had had a colonoscopy...to which I responded, "ummmm no?!?!" (thinking to myself, why would I elect to have one of those?!?) He proceeded to explain these lesions on my liver. He is concerned because if I have the genetic form of these Desmoid tumors (Familial Eadenomatous Polyposis), I will be at a predisposition for colon cancer. Apparently, the liver is often times one of the first places that other cancers metastasize to. So, basically, he just wants to rule this out. He apologized that all of this is happening, and he said he was so sorry to give us this information, but that he is my doctor and wants to do his best to take care of me. He said that "tissue is the issue" and he would ideally love to have a biopsy done. So, this is the route we have chosen to start down.
I have been scheduled for genetic testing and for a liver biopsy tomorrow morning at Mayo. We will be leaving super early in the morning to get there for the first appointment at 9 am. We covet your prayers. I have been super busy with Kenton's birthday weekend, my parents being here, and then with Kenton's surgery and recovery that I haven't allowed myself to stop and think through this news. Anytime anyone says cancer, I think it is safe to say that the initial response is fear. I am trying not to be overwhelmed with fear and uncertainty, but I am scared. I am nervous. I am anxious. I can feel the emotional dam that is about to break open and send a flood of tears. I have given myself permission to cry and be upset, but I don't want it to consume me...not until we have more answers. I am trying to stay calm though.
Thank you for walking alongside us as the plot keeps shifting. Thank you for your prayers, your words of encouragement, the messages, the snail mail...it does not go unnoticed and we are so thankful for our tribe.
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