HEALTH UPDATE: Holding steady!!! Labs are good. PT is really helping my knee to just be grumpy and not so angry. Weakness in the legs persists but that’s ok. I’m so lucky.
Oh where do I start! If you follow me on social media, you likely know by now that I completed the rappel 14 stories off the Hilton Hotel in Madison. It was every word that is spectacular. From the support to the excitement of doing it! From my fierce cheering section to the $3,620 collected! I thank you!!
Next up. More living. It’s more important than ever. I need to squeeze more in. This week I started with preparations for school. My sweet girl will be attending a beautiful new school just a few minutes down the road. I’m so excited I can hardly stand it. Of course I’d prefer if she stayed right by my side as she’s done for so many months, however, the time has come. She needs friends. She needs a teacher who is not her mom or dad. It’s time. Please covid, don’t screw this up for her!! The preparations seem endless. Online registration. Past health records. New epi pens. Doctor forms for epi pens. Plans made with school nurses. They are absolutely wonderful. I won’t lie. Willow’s allergies have crippled me with fear in the past. The wonderful nurses I spoke to have calmed me. Thank you nurses. I love you and will be forever grateful. Clothes. Tennis shoes. She needs everything. School supplies! It’s all so fun! This is an experience I’ve always wanted to have. I’m so grateful to be here. SO GRATEFUL!!
I’m at the Carbone Cancer Center right now. I’m waiting for a room. Spa day. I love spa day. It’s so busy here today! I can feel the nervous energy of the delta variant. Everyone is getting back into the groove. Today I had the pleasure of meeting with the fabulous Dr. B. He heads up the trial that I am on. I really enjoy his smile and positivity. Like, really!!!! He asked how I was and I felt strongly that words just were not in order. I whipped out my phone and showed him my rappelling video!! You did this Dr. B!!! Your trial is saving me so I could do this!!! I think he was thrilled and amazed. I could be wrong. He’s a nice guy. He would have been excited if I had shown him a picture of a garbage can! Lol. I was proud to show him and I hope he’s proud of what he is doing to help people like me.
Now it’s time to get down to business. I’m thrilled with my current condition but I’m antsy. What is going on inside of me? Is the tumor monster dead or alive? My expectations are low, but a part of me is wanting to be free of this disease! Can I become the ultimate miracle? I’m already a miracle but how far can I go? I’m not looking for proof today. I know the status of my disease can only be determined by biopsies and scans. I want Dr. B’s opinion. I understand my case is rare. I understand he has no science to make a determination. I know acinar cell carcinoma is so rare there is little to zero research, especially a tumor with so many mutations! The short answer is that I am doing SO WELL. It’s incredible. Living life and positivity is where it’s at!! The long answer? I still have tumors. He thinks there could be cancer cells that are smarter than my immune system lurking. These little f’ers coukd be lurking and trying to figure out how to grow. Blood results can be normal during this lurking phase. A pt scan may or may not detect this activity. I found that so helpful. Now I can get that scan out of my head. I’ll wait until March when the trial has me scheduled for the scan. I asked about the clot in my vein that is deleting my option for surgery. He thinks it might be scar tissue. Never to be removed. Not ever being able to have surgery may sound alarming to some. Not me. I’m not going to worry about that until it’s the only thing left. I’ve just read so many testimonials of people that have gone through it only to lose quality of life and have recurrence just months later! Good thing it’s a non issue right now.
I asked about the side affects that others have experienced. Like death. Two people in the same trial that I am part of have not made it. Yes, there is the possibility of myocarditis (heart) and now a lung issue…but the risks are low enough that the positives outweigh these risks.
Overall, I’m still doing great. I’m still stable. I still have no idea how long I will be stable. I still have no idea what my future holds. I still know how lucky I am and the most important thing? I’m still determined to live my best life!!