April 26 – 2nd Trip to Mayo
Sunday, Jim and I flew back to Minnesota and thankfully there was not 2+ feet of snow on the ground, like there was last time. The Mayo Clinic protocols for Covid-19 were impressive and gave me re-assurance that I was at the right place for this surgery. Jim dropped me off for my first two appointments. Everyone was required to wear a mask. You were asked a series of covid-19 questions, your temperature was taken, and you were given a sticker with that day on it to show that you had been approved to enter the building. Everything was extremely clean, the chairs and floor were marked for social distancing and there was hand sanitizer every few feet. Monday, I was tested for Covid-19, Tuesday, I had another Chest CT and then Jim and I met with the Surgeon. She was young, intelligent, informative and answered all of our questions. As nervous as I was for the procedure the next day, she helped to calm my fears. As we were leaving the office, she said “you aren’t old enough, to have grown something this large”. That has stuck with me and will drive me to search for more answers in the future.
April 29 – Surgery
This was one of the scariest days of my life. Jim joined me as I waited in line to check in for my surgery. He carried my bag, held my hand and looked past my mask and into my eyes. We checked in at 5:45 AM and waited in line for roughly thirty minutes. Those were some of the longest minutes I can ever remember. Finally, the time came to part ways and we could not hold back the tears. It is hard enough going in for such a serious surgery, but to go in alone, was unlike anything I could have imagined. It felt surreal. Everyone was wearing masks and staying away from one another. I was taken upstairs to the pre-op room, changed into my gown, texted Jim, my Mom, and some of my friends one last time and then they took me back for surgery. I was the first one of the day, which was great because everyone seemed eager to get it going. They rolled me in to the operating room and I slide over to the operating table. They tried to hook in to my IV and had trouble, there was an issue with the line. The doctors tried to keep me calm, but that pushed me over the edge, and I started to tear up, my nerves were boiling over. Thankfully, they got an IV in the other arm, pushed through the sedative and I was out.
The Mayo Clinic has a text message service and sent updates to Jim every step of the way. They called Jim when I was out of surgery and updated him on how everything went. He then called family, my close friends and updated a private Facebook group we had created to keep everyone updated. The surgery lasted a little over three hours and was a success.
I have a brief memory of waking up after surgery and being in agonizing pain. I remember crying and saying my pain was an 11 and then I was back out again. A few hours after that, I woke up in my room and my pain was under control. I had an epidural in my back which numbed everything from the middle of my chest down, as well as, a Fentanyl drip and around the clock pain medicines. I had two chest tubes, two IV lines, a wound vacuum on my incision, leg compression wraps, oxygen and a catheter. I was as hooked up as you could be.
Overall, the surgery went well. The mass had grown, but they were able to get it all. I was extremely glad that we had gone with the sternotomy, as opposed to a less invasive approached, because the mass had grown on to the pericardial sac around my heart. If we had done the less invasive approach, the Surgeon might not have had access to get that part of the tumor. With this approach, she was able to separate the tumor from the heart and suture up the pericardial sac that contains the heart.
The days after surgery were long and lonely, but the staff did everything they could to make it the best possible experience. The hours following surgery were spent trying to control my pain. The incision went from the top of my breastbone down through my rib cage. The issue was the epidural could only cover half of the incision, if the epidural went too high, it could affect my vocal cords and my ability to eat. The pain management team was great and checked on me every hour until we found a mixture of pain medicine that was tolerable. The issue then became, the nausea from all the pain medicine. The first night after surgery my nurse (Mary Jo) got me chicken noodle soup, tea, crackers, and chocolate pudding. I had to move to the chair to eat which was my first time getting up since surgery. The pain was unbearable and the smell of the food made me nauseous. I sat in the chair for over 30 minutes before I tried to eat. I took one bite of a cracker and immediately started to vomit. I squeezed the pillow against my chest for support, but there is no pain like vomiting the night after getting your chest cracked open. Mary Jo rubbed my back as I vomited and cried in pain. They adjusted my pain medicine, gave me nausea medicine and I went back to sleep.
The next few days, we got the pain management under control, I was able to eat solid food and I got up to do physical and occupational therapy. I was surprised at how well I was able to get around and move my shoulders. I would text friends and family as much as I could and Jim would give updates to the Facebook group. The comments on the Facebook group really helped me not feel as alone as I sat in that hospital room all by myself. There was a TV with free movies on it, so I constantly had something on as I drifted in and out of sleep. By the time I left, I watched roughly 38 movies!
The food at the Mayo Clinic was great compared to most hospitals I have been in over the years. They had a full menu and you could order whatever ever you wanted, whenever you wanted it. When I was feeling well, I was adventurous with my choices but once they started changing my medications, I needed to stick with rice, broth and pudding.
I started having congestion in my sinuses and in my chest. It was extremely painful to cough or sneeze, so the nurses started giving me Nebulizer treatments a few times a day to help break up the fluid and make it easier to get it up and out. This was helpful, but after too many treatments it started to make me shaky and jittery. Once my symptoms got better, we stopped that treatment. This pillow was my best friend when it came to coughing, sneezing, vomiting, or even just getting up. Pressing it against my chest helped keep everything in place and reduced the pain.
The plan was for me to be in the hospital for 3 – 4 nights. The most important thing was to have my pain under control before leaving the hospital, because we were in Minnesota and I would need to fly home and be comfortable doing so. Friday, they removed the first chest tube. I had an x-ray and everything with that process went great. Saturday, they removed the epidural and started working on getting me off the IV pain medicine, to prepare me for going home. That afternoon they removed the second chest tube and the catheter and the IV in my left hand. The effect of the epidural started wearing off and I could feel everything. That evening I needed to go for my second x-ray to make sure my lungs still looked good after removing the second chest tube. I stood up and the pain rushed through my body. The gentlemen with the wheelchair was so kind and was at my door to take me down, but I could not stop the flood of emotions running through my body. I started crying, my pain was a 9 and I sat back down on the bed. Crying made the pain worse, so I tried to slow my breathing and calm down. A nearby nurse came in, rubbed my back and asked the gentlemen to come back later. I was in no position to go down for an x-ray.
Jim had been alone at the Airbnb Wednesday and Thursday, but Friday a member of his family arrived to be there with him, while he waited for me to be released from the hospital. It gave me such peace of mind to have someone with him. I knew how I felt being alone in the hospital and could only imagine how helpless he felt. His family member is also a nurse, so she helped answer questions and ease his mind and mine in the days to come.
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