HEALTH UPDATE: The world tour (Okay, Milwaukee and MN) of opinions is complete. The best news I heard during our travels is that the Shamrock Shake will be back on February 19th and for the first time in my life my Dr. says I should eat all the calories that I can. This makes me so happy. Except for the cold sensitive days when I will need to refrain. Moving on…
The news remains mostly the same. There is no miracle surgery to complete. The cancer must shrink. We learned so many more details and the confirmation of my diagnosis remains a mystery until more tests are ordered. Dr. Evans at Froedtert Hospital in Milwaukee was most impressive, as was his highly skilled nurse practitioner Gabby. Dr. Evans was serious. He looked at my information with laser focus. He is a surgeon, not an oncologist. However, he is dedicated to pancreatic illness. Gabby says he thinks about it all the time. I believe it! This doctor did not just look at the surgical aspect. He looked into the eyes of the tumor monster!! He saw something askew looking at the diagnosis and lining it up with me and my story. Something just wasn’t right. There is another type of tumor called Neuroendocrine tumor. It is still cancer, just a different kind. He said based on the size of the tumor it just didn’t make sense that I was feeling so relatively good. Other basis for this red flag were buried in science with all the tests I’ve had done. He said that if 50 people sat in my chair with the same medical story, 49 of them would have a neuroendocrine tumor.
This man does not just look at the pathology report and accept what it says. He looked at the entire story. To say we were impressed is an enormous understatement. He wanted to do more research and that he did. Gabby called me after hours on Wednesday night. Dr. Evans had been researching my case. He thinks it could be…wait for it…..a COLLISION TUMOR…..! This means a combination of both neuroendocrine and Acinar cell! We need more tests to confirm. Dr. Evans gave my oncologist his cell phone to discuss! His cell phone! I am waiting news and further instructions. I don’t know what it all means. I don’t know if it’s an advantage or disadvantage. There is much to learn. I was just blown away that he would take the extra effort to help me. Finding out exactly what I have is critical so we know how to kill this! We found our guy! I’m also thrilled at the possibility of having a COLLISION TUMOR just because of the name! That’s cool!
Mayo: Well….I was disappointed. All of the health care professionals that I’ve met have not told me what I want to hear. The nurse practitioner was no exception. I thought about this carefully because I never want to make judgement based on this. This NP was different. She stumbled on her words. Facts were changed from one part of the conversation to the next. It was unorganized and confusing. When she was finished, I didn’t think I could trust the information she was telling me. I expected more.
Dr. Ma is an oncologist at Mayo Clinic. He is young and intelligent. He seemed to me like a textbook doctor. Mostly because when we asked him about the pathology report and my diagnosis, he stood firm. It’s what the pathologist said. Period. Acinar Cell. Period. Wouldn’t blink. He had some opinions on my genetic testing results and the mutations situation. He thought it didn’t really matter how many mutations you have but which ones so that the immunotherapy can target that specific mutation. He also had a few ideas for other drugs that may work. Of course that could all change with a new diagnosis. COLLISION TUMOR (insert lightening and a boom)!!??!!?!! He thought we should stay the course of the chemo I’m taking now until it no longer works….which by the way, it’s only “not working” if the tumor becomes larger or spreads. Since mine is holding steady, that means it is working! We were also told that we should wait 8 total rounds of chemo before determining how well the chemo is working. I guess more could happen in the next 4 rounds. Also, something I haven’t heard before was that I had fluid build up in my belly on my first scan in November. Nobody told me. There is a medical name for it but I can’t remember what it is. We shall call it “tumor monster vomit”. This vomit was nearly gone on my latest scan so they tell me that is really good and the chemo is doing something. I swear every time someone new looks at my scans there is something else on it that nobody mentioned before.
On Thursday, we met with a really sharp surgeon at Mayo. Very smart, confident and knowledgeable. He was the first to really write it all on the wall. The affects of his words were a little chilling to me. This is a serious situation that I am in. There are two veins that go from my pancreas through my liver. One of the veins is completely blocked with cancer up into the liver. (In the vein, going through the liver. NOT in my liver.) That vein is toast. The second vein has less cancer in it. This. Cancer. Must. Go. That would be the only way for them to get rid of this monster. They would remove the toasted vein by taking out part of my liver. He said people do “great” without their whole liver! It just grows back some! No Problem! WTF!? The surgeon said this CAN HAPPEN. The cancer CAN shrink out of the vein. IT IS POSSIBLE!
Big picture: I can beat this but I need help. I need this cancer to shrink I’m very blessed that I have mutations and more options than most for chemo treatment. My diagnosis may remain the original acinar cell but at least we will know for sure what I have so we can try the most effective drugs possible. We did not get our miracle surgeon we hoped for but I would do this tour all over again. We have learned so much.
EMOTIONAL EXPLOSION ALERT!
Wow. What a week it has been. I was emotional (bawling) on the way home last night. I pretty much shut down and didn’t even have the strength to talk to anyone. Not normal. My easy solution doesn’t exist. It’s been a dream of mine you know. Snip snip here and there, lose your hair and presto, you get your life back! That black tornado in the floor had the tightest grip on me yet. It was pulling me to the dark despair in a fierce manner like i haven’t seen before. Then I woke up today. I had a strong feeling I would bounce back and I have for the most part. I can feel the love and happiness that this trip brought. I feel so grateful for everyone that helped pull it off. I can’t go on another word without thanking my peeps.
Sister Melanie. I just burst into tears typing your name. What you have done for me! What you mean to me! Enough of that. Get up, keep going, we aren’t done yet. I love you. LOL. Seriously, you are so amazing. Sister Trina! Thank you for coming to MN with us and taking care of our girl while we were in appointments. Willow had the best time ever. She will surely wake today looking for you and wondering when you are coming over next. Your kind heart, beautiful and uplifting playlist you made for me and just everything you do is so appreciated and loved. Thank you Stephanie and Gwen for playing with Willow so Tom could come to Milwaukee. She had the best time ever and can’t wait for you to come back! Thank you Tom. I know this is so very hard on you. I’m so sorry. Having your big paw to hold during this difficult time meant the world to me. My sweet Willow. Thanks for making me laugh when all I wanted to do was cry. Love is not a strong enough word. You are my world sweet girl. To my Mom. You were with me the entire time. In my heart and soul, as always. I love you. Thank you. Sister Chris, Brother Bill, Brother Ben, Sister Beth, brother Tim, Sister Gwen, Sister Staci, brother Dave, Jeanne, Annabelle, Henry, Billy, Bailey, Nolan, Carson, Daisy, Ruby and Grant….I cannot do this without you. I love you all to the core. Thank you. And to all my beautiful friends, THANK YOU! Your love, support, prayers, cards and gifts are so appreciated. I love you all!
I feel like the mountain is so high. So, so high! The top is in the clouds. Sun is peaking through the clouds. My family, friends and all who have supported me represent the sunshine. I’m coming for you! I see you and I feel your warmth! I will climb this mountain and not look back! I promise!
YOU ARE MY SUNSHINE!