Monday – MRCP and ultrasound.
Tuesday – Doctor says things are bad.
Wednesday – Too many phone calls
Thursday – Pre-transplant testing and consults
Friday – More of the same
Monday was Memorial Day, and the break was much needed. After the long weekend, this morning, I met with the hem-onc specialist where he was supposed to prescribe a single dose of radioactive chemotherapy that will later be infused directly into my liver just in case the tumor isn’t benign. Remember, the tumor is in a position where we cannot know if it’s cancerous or benign, so that procedure will ensure if it is cancerous, that the tumor won’t grow. Once a certain size, a tumor can keep you from being on the transplant list.
However, he had a lot of different ideas than all of my surgeons and specialists and needs to do a lot of consulting before everyone decides what needs to be done. All of this will also need to be gauged along how high on the list I am when I’m officially listed on Friday. If I’m the top few people on the list, they won’t even worry about trying to shrink the tumor.
After that, we met with Lisa the social worker whom we met Friday, and she wheeled me around the hospital showing my mom and I the Transplant ICU as well as the step-down Transplant unit. The nurses look great, there’s a lot of support staff, and the ICU is brand, shiny new! It definitely helped to get an idea of where we will be staying for awhile, and the nurses looked really specialized and competent.
After that, the pre-transplant list rules sent me to the Women’s Clinic for some testing. I was heartbroken because my doctor’s secretary said she was now only teaching, not practicing, but my nurse practitioner told me she comes in for practice two days a week. That would have been good to know, oh, maybe a week ago? Or 3 months ago when I called? Anyways…
With each appointment or meeting or consult or test, this whole situation is starting to become so real, and I’m anxious just to come out on the other side.
I wanted to publicly thank my mom for driving us to and from the Clinic all of this and last week and for not leaving my side most of last week. I think she’s a little too worried about me, but that comes with being a mom. With a higher power to carry me when I am too weak to walk, I know I’m going to be just fine.
Last night before I went to bed, I asked my mom if she would sing to me when I was hurting and in the ICU. She used to do that when I was a tiny little girl, and I think the scariest part about all of this is not being on a pediatric unit, not being guaranteed my mom can stay with me for every moment of every day. No matter how much I’ve been through, I’m not ashamed to be vulnerable and cry for my mom or my stuffed “lovey,” or scream for higher pain meds. This is going to be hard, but I hope the result is worth it.
Thanks for all of the cards and prayers. The cards are touching my heart, and the prayers are definitely felt.