Tired

HEALTH UPDATE: Froedtert appointments have been completed. I had new scans and labs done very early Monday morning. Dear sister Melanie insisted she attend the scans even though I felt fully capable to take care of it myself. Thank goodness she helped me! I would have been curled up in a corner sucking my thumb after running around way more than anticipated. We took the scans, in hand, and headed to Milwaukee. We met with the lovely nurse practitioner to Dr. Evans. She informed us that the tumor monster has not shrunk. It hasn’t grown. It appears the cancer has not spread. I’m holding steady with no change. Some could say this is horrible. The chemo is not working. Some could say that it is wonderful news! It is holding this devil disease from hell at bay! I agree with both. After an exam and many questions to complete my profile, we headed home. We were beyond exhausted.

This morning, Tom, myself and Melanie hit the road once again to Froedtert in Milwaukee to meet with Dr. Evans. The facility is amazing. It’s very big, clean, new and easy to navigate. Dr. Evans was even more impressive. He reviewed my records and scans. His recommendation is that there will be no surgery at this time. Although this is not what I wanted to hear, his knowledge and further discussion with us was very informative. He gave me a better understanding of “WHY”. Why no surgery? I’m the first to admit I’ve been in a fog but I really had no understanding that the cancer is actually in a vessel that goes into my liver. The size of tumor monster is secondary to this very big problem. He cannot see how far it goes into this vessel because the vessel goes through my liver! Gross, huh? So now I know why. We need to kill this cancer in the vessel! Radiation and surgery are off the table at this time.

This next bit of information really blew me away today regarding the pathology of the tumor and the unbelievably rare diagnosis of Acinar Cell Carcinoma (ACC). Pathologists have confirmed this diagnosis from UW Hospital in Madison based on the biopsy. Mayo Clinic has also done a re-read of the report and agrees with the diagnosis. Dr. Evans, with his experience, informed us that ACC tumors are not usually so big. He finds it extremely unusual that I am doing so well physically. I’m not on pain meds. I can get around. I drive my car. My current chemo cocktail does not work with the other type of cancer he wants to explore. He doesn’t doubt the ACC diagnosis but sees enough to do more tests to be 1000% sure. I thought this was incredibly cool. If we are going to shrink this thing we need to be 1000% certain we know what it is! If it is misdiagnosed it won’t change things too much that I’m aware of, other than how we treat it.

Dr. Evan and team will be working hard to gather more information and talk to my oncologist in Madison about arrangements for further testing. We are on board with this plan and waiting with anticipation for more tests and more answers. Once we have the diagnosis worked out and double-triple confirmed, we will plan treatment accordingly. We haven’t even gotten to the immunotherapy! Dr. Evans is a surgeon so we will need to discuss with the oncologist more about that.

Just when you thought you could not handle any more twists and turns. MAYO OR BUST! We head out tomorrow morning and will meet with an oncologist tomorrow and surgeon on Thursday. More information! More opinions! More head exploding and mind bending medical thoughts to fill my brain!

Ramblings…..

I’m so tired. My head is tired. My brain is tired. My thoughts are intense. I’m struggling to organize them. I’m drifting so quickly, like a feather in a wind storm, from scared and depressed to curious and confident. Today after the appointment, I announced that it was time for me to turn it off and rest. I turned an imaginary key on the side of my head. The subject was OFF for the rest of the day. Now we all know that is easier said that done. It’s not turned off. With all the crazy going on, I still feel unusually calm. It’s my sweet Willow who sings to me with the softest, most loving voice I’ve ever heard and my trust in God’s plan that help me find my calm place with all that is wrong right now. I’m so very grateful.

Thank you all for your continued support and prayers. It is true, I cannot do this without you!