HEALTH UPDATE: Tumor monster has shrunk an additional 22%. I saw the scans. It’s incredible. Labs are just as amazing. Of all the tests, only 5 are wonky. I think when I was first diagnosed only 5 were normal. Ha ha. Just kidding but sure seemed like it. Next treatment is in 3 weeks and another treatment 3 weeks after that. We will also likely do a scan 6 weeks from now.
As I suspected, my oncologist is not exactly sure what to expect given the rare circumstances. My prognosis is unknown but acknowledged that it is better than when I was first diagnosed. She isn’t sure if the immunotherapy could knock the whole thing out or if it will ever come back in the future should I be lucky enough to slay this monster. I am certainly rare. With that comes few answers. Time to coast for 3 weeks until my next visit to UW Carbone Cancer Clinic.
SO. MANY. EMOTIONS. My day started good. Woke up, got ready, drank coffee, ate my oreos. The drive in was pretty. Sunny sky, beautiful scenery down John Nolen Drive. My favorite street. Capitol and lake views. Life is but a breeze. I’m calm and ready for this appointment. This appointment that will give more insight to what my future holds. It can get so deep if I let it. Today I let it. I let it get deep because today that is just the way I am. I’m opening the door to all the different feelings I’ve experienced in the past 6 months. Opened the sun roof and just let it out! Wahoooooo!!!!!
A very familiar song begins to play. You never know what you will hear when you put it on shuffle. I went from White Snake to Josh Groban, Ave Maria. My Dad song. I love and miss my Dad! We picked this song to be played at Dad’s funeral. It’s my #1 played song of all times. It connects me to my Dad’s last days so I don’t forget. I don’t want to ever forget! When I hear the song I go back to that time. He was eating breakfast and could hardly sit up. Brother Ben was there and made an incredible breakfast. Scrambled eggs with mushrooms, onions, green peppers and cheese. Bacon. The whole works. I was to take him to chemo that morning. We went to the ER instead. Just me and Dad. He was alert one minute and gone to a different zone the next. He was a fighter. Man, did he fight. He was admitted. The news was not good. It was close to his time. I rode in the ambulance with him to Hospice. Just me and Dad. He was brave. While alert, he pretended like he didn’t know what was going on. He was always the protector. One week later I was by his side along with our family. Father came for a final blessing and just seconds after he blessed my Dad and we said a prayer he died. He was gone. As hard as it is to go back to that time I will cherish it forever. Words were spoken and glances were given when the words couldn’t come out. We knew that all of our differences were long gone. Our hearts were broken but at the same time healed. Being together for his unfortunate cancer journey is something that I’ll never forget. So yeah…that song….it reminds me of that time. Reminds me of my Dad.
Wonder why I’m emotional today, right? I get to the hospital. I get my labs drawn. I go back to drop off my other sample and I have a gentle touch on my elbow. It’s a beautiful nurse. She sounds familiar as I know she’s poked me before. Her eyes are so caring. We all have masks so it’s much easier to focus on her eyes and on her voice. She hands me a t-shirt that says “I am loved. Carbone Strong”. It’s a beautiful gesture and I am so touched. She refers me to an article of the origination of this gift and it really goes to show how caring nurses really are. I knew that already. With the covid epidemic patients are not allowed to bring a support person. The nurses have fallen into the caretaker role beautifully in this absence. These shirts are their reminder to us that we are loved! We don’t have to go through this alone! Someone! Give me a tissue! So sweet. So appreciated!
Next up, my oncologist. I’ve been unfair to her. I didn’t like her message at our first meeting. How do you tell someone they are pretty much doomed? Looking back I should not have been so critical. From a professional and knowledgeable standpoint she’s been spot on. I’ve been anxious about this appointment. By now I’m a ball of emotions. It’s good to see her. One on one. We haven’t been able to have this luxury since the covid 19 outbreak. She is smiling. I can’t see her mouth but her eyes are squinting. Smile squint. She confirms what the coordinator leaked out to me on the phone. The tumor monster has shrunk again! 22%! On top of that, my labs are looking very solid. We will stay the course. We will continue treatments and see what happens. Might even chat with the surgeons after the next scan.
I asked if I could have a drink. She did not answer for several long seconds. With no response I added, “just a couple drinks, no big deal”… We negotiated. She said one drink was okay. That’s fine with me. I’ll probably chicken out anyways. Lol. We continued to discuss my situation. She said my scan was “awesome”. My other symptoms seem so minimal that all systems are a go. In other words, this is all soooooo CRAZY!
I’m trying to wrap my head around how lucky I am. This is a freaking miracle. Against all odds I am having these incredible results. I looked at my doctor and told her I thought I was in trouble before we started the immunotherapy. I was so sick. She looked at me and said, “you were”. I was! I knew I was! Wow. So now I’m feeling amazing. All of these miraculous things are happening. What did I do to deserve this? How can I be so low and so full of hopelessness one day and so full of hope the next day? I think I have survivor guilt and I’m not even out of the woods yet! But here is the thing. So many people don’t get this chance. They suffer and they fight to no avail. I pray for them.
Do you believe in miracles? I do. I’m living it. Never give up and fight, fight, fight!
Nothing but love for all!!