Hey everyone, it's been a while and a lot has happened! While I work on putting some posts together to chronicle the journey that we have been on since January 8th, check out this post from Kelly as we kick of Colorectal Cancer Awareness Month.
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This is our first update since Andy’s liver transplant, and there is a lot to say. TLDR; He is doing really well, and his new liver is settling in :) But, because March is colorectal cancer awareness month I wanted to also expand a bit on his diagnosis, because this disease is becoming far too prevalent, especially among younger adults. If colorectal cancer is caught in early stages, it is highly curable. So, to spread some awareness and also give an update I wanted to talk about his diagnosis.
I vividly remember every detail of the last week before Andy was diagnosed.. It’s like my mind is made of stone and it is engraved as the last normal moments we have seen for the past 18 months. I remember the time when we were naive to the challenges that were ahead and the devastation that was about to take place. I look back at pictures of that week with such jealousy that I was not sure we would ever have that again. Don’t get me wrong, we have made wonderful memories this past year and have tried our best to keep things flowing so the girls see no interruption, but it is inevitable that things have changed. That week before his diagnosis I had the week off of work, the week before Caroline was going to Kindergarten, the last week of summer. We did so many fun things, me with the girls, and as a family. Beaches, museums, movies, the zoo….it was a full week of summer fun. Then Caroline had her annual checkup, the last photo we have of Andy before being diagnosed was at her checkup. Again, a weird snapshot in time when everything was ok. I look at that picture a lot for some reason, not totally sure why, but it’s like I’m looking for answers. Looking at how I missed a stage IV cancer diagnosis as a medical professional. Looking at how simple life was. Looking at our girl with her Daddy. We were healthy. We were happy.
Then I had the most incredibly awful night at work, by far the worst night I have had as a nurse or nurse practitioner. Andy had texted me that his stomach was upset so he was going to bed early. He had been having some abdominal pain on and off for a few months, but we tried to attribute it to something he was eating or perhaps an allergy. I spent the rest of the night counting down the minutes until I got to come home. Then, at 6 am I got a text message from Andy saying he had the worst abdominal pain he has ever had, and he thinks he needs to go to the ER. When I got home, he couldn’t lift our 16 month old out of the crib, he was vomiting and keeled over in pain. When I look back, I think some part of me knew. Maybe not that he had advanced cancer, but that something was really wrong. It’s like I had acknowledged his symptoms over time and wrote them off as me being paranoid, but now each puzzle piece was aligning in my head and the final picture was coming into full view and was all of the sudden crystal clear. I remember turning the corner in the ER to see Andy after his CT and the look on his face I instantly knew. He handed me the phone with his results and I felt our life, our future, everything we knew slip away. I look at the texts to him before and after the diagnosis. Texts to my sisters and parents and friends before and after the diagnosis. Again, not sure what I’m searching for. Perhaps a longing for a text chain not inundated with conversations about cancer. The grief the next few hours, days, and weeks was intense. I would cry every time I would look at Andy and he would smile back at me, every time he would be playing with the girls, everytime I would see an older couple out in public. So angry and jealous that they get to grow old with each other.
Adrenaline kicked in and we moved into the attack phase. As Andy has detailed throughout his blog, he underwent dozens of rounds of chemotherapy, scans, procedures, and labs.. In the spring of 2023 his oncologist referred us to Cincinnati because they were doing liver transplants for colorectal cancer, and he thought Andy would be a good candidate. However, by a stroke of luck, his oncologist just a few short weeks later told us that Michigan was finalizing their protocol to transplant patients with CRC. We met with the team at Michigan and immediately felt comfortable with moving forward. From my work, I know how significant an organ transplant is. From the whole process of being worked up, to getting an organ, to recovery, and finally keeping his body from rejecting the new organ. I knew it was going to be a lot. Throughout the summer and fall, chemotherapy got harder and harder for Andy.. We weren’t sure how much more he could take, but he would always say he would never stop. His oncologist just kept saying we have to keep pushing and keep the pedal to the floor so we could make it to transplant. And then it happened.
As fate would have it, we had bought tickets to the National Championship game in Houston. Andy and I always said we would go if we made it, probably because our years at Michigan, the football program was on the struggle bus to say the least. So, we were all set to go. Then at 5:30 pm on January 7th, the day before we were supposed to leave the championship, we got the call. We had previously had three other calls that all fell through, but for some reason this felt different. We felt like it was going to happen. Andy was admitted at 9pm and had a night full of bloodwork and tests. Neither of us got any sleep. He was taken to pre-op where we met with all the surgeons and anesthesiologists, and at 10 AM I kissed him goodbye and he was wheeled to the OR. The first two hours of the surgery were the absolute worst. His surgeon told us he was going to sample approximately 10 lymph nodes from the liver/abdomen and send them to pathology to be read immediately. If there were any signs of cancer cells, they would not move forward with the transplant, because the chance of recurrence was too high. I was waiting with Andy’s Dad, his sister, and my sister to hear if they could move forward. At 12:30 my phone rang and my heart sank into my stomach listening to the voice on the other end. “Pathologies were clear, we are moving forward with the transplant. His old liver is being taken out now”. I was shaking and in tears. We all felt like the hardest part was over. He was out of the OR a little bit after 5 pm and was transferred up to the surgical ICU. When we got to see him in the ICU he was groggy for sure, but awake and alert. He did so well in the hospital. He flew through the ICU without any complications and then 6 days post transplant we got to bring him home.
Since being home, he has done pretty well. He has definitely been pretty fatigued, but each week seems to be getting a little bit better. His incision has healed up beautifully and overall his tolerance of all the medications is going well. WHen he was discharged his liver enzymes were normalizing really well, and then they started to climb the last 3-4 weeks. He had an ultrasound which looked good, and then he had a liver biopsy. His liver biopsy did show some concern for acute cellular rejection (rejection seen at the cellular level only) and they said it was mild. His providers have said this is not completely unexpected since he is otherwise young and healthy. His immune system is essentially working as it should and attacking something that is foreign. We increased some of his immunosuppressants and also gave an extra large dose of some steroids, and things seem to be headed in the right direction now.
This post has been in my brain for a long time. I wanted to get a lot of my memories and feelings out, possibly for my own mental health, but also to bring some awareness. Colon cancer is now the second most common cause of cancer related deaths. It is detectable, it is treatable, and it is beatable. So my plea to everyone is this, if you have any concerning symptoms, please talk to your doctor and advocate to get screened. And if you have any symptoms, any family history, or are over the age of 45, please get a colonoscopy. I promise you a colonoscopy is easier than being treated for cancer. I can’t begin to say how grateful I am that Andy got this chance. We were just talking about how truly lucky we feel that a transplant was even an option for him. So many people diagnosed with stage IV CRC never have this as an option. We are grateful to his donor’s family for giving Andy this gift of life and hope we get to thank them some day. Now, our future is coming back into picture, and we are slowly returning to how we felt before his diagnosis. DOn’t get me wrong, we know that he still has about a 50% chance of recurrence, but we are hopeful that this will be his forever cure. I now have renewed hope that Andy and I can be that couple growing old with each other, watching our girls grow up together.
Love to everyone! Spread awareness when you can this month and get a colonoscopy!!
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