I started to regain consciousness while they were pulling the tube out of my throat. I distinctly remember that, and then everything was a blur again until I woke up in recovery with my husband by my side. I had to wait a few hours in the recovery area for a bed to open up in the ICU, so finally, around midnight a room became available.
What started then was 18 days of work to heal and get well enough to be able to leave the hospital. In my naivety going into the extrapleural pneumonectomy (EPP) surgery, I thought I’d be out in days, not weeks. I was so wrong.
Starting My Road to Recovery
Within 24 hours of completing the surgery, the nurses had me up and walking with the aid of the “Sugarbaker Walker.” It was a walker made to carry the oxygen, IVs and all the tubes and drains so I could safely walk around the ICU. I remember thinking how quickly they had me walking. But they told me getting up and moving reduced the dangers of pneumonia so I made getting up and walking my job. I did not want to get pneumonia with 1 lung.
I was in the ICU for 4 days, and during that time, I had 3 of my 4 chest tubes removed. On the 3rd day they removed the nasogastric tube so I could start on a very limited liquid diet. Each day, I felt a little better, but still sort of in disbelief that I was really going through all of this. My body was functioning with 1 lung.
After the 4th day, I moved to a step-down ward called the TICU (Thoracic Intermediate Care Unit). It was a ward shared by 3 other patients, with only curtains separating our beds. I understand it’s easier to keep an eye on each of us that way, but there was little to no privacy and hearing everything that went on with the other patients was not pleasant. I was the only woman, and was at least 2 decades younger than the other patients.
Navigating Post-Surgery Complications
It was my 2nd day in that TICU that Dr. Sugarbaker told me that my kidneys were not working and I was going to need dialysis due to my creatinine levels being elevated. The heated chemo wash with cisplatin from the operation didn’t play well with my kidneys, and now they were letting us know. I was terrified of dialysis and was scared of what the lasting implications meant. I don’t know if you believe in miracles but I was praying for one that night.
I got on the phone, called my parents and asked them to ask everyone they knew to pray that my kidney function would return and I would not need dialysis the next morning. I spent the rest of that day resting with my headphones on, listening to a CD from a group called Casting Crowns and another from a friend who is a singer/songwriter and had his own medical ordeal a few years prior. I prayed and slept, and prayed some more.
They came in at 6:00 a.m. to take my vitals and do my bloodwork, and prep me for dialysis in case my creatinine levels were still high. I don’t know if it was all the prayers or just my body healing, but my creatinine levels dropped through the night and my kidney function had been restored! I nearly cried in relief.
I called my parents later that morning to tell them the good news, and my dad shared a dream he had that night: a window opened behind my bed and angels rode in on a beam of white light and surrounded my bed. He knew when he woke up that I was going to be ok and that my kidneys had started functioning correctly. Like I said, whether it was my body healing or a miracle, I don’t know, but I wasn’t going to complain!
Out of the Woods
Within the next couple of days, I was moved to a regular room. In this room, I only had one roommate at a time. For the remainder of my stay, 4 different people rotated through as my roommate, each getting discharged within a couple of days. My last chest tube had been removed, and all in all, I was feeling pretty good. I still had bouts of nausea, and the fatigue was no joke. But I was seemingly on schedule to be released soon, or at least I’d hoped so, but my kidneys decided to work a little TOO well.
I was having difficulty maintaining magnesium and potassium levels, both of which are vital for heart and organ function. I was put on magnesium and potassium supplements until my body could maintain them. And, because of that, I was stuck in the hospital for another week at least. During that time, 2 people I’d met earlier had surgery. One made it out fine, but the other coded on the OR table and passed away.
The news hit me like a ton of bricks. Bill, his wife Dorothy and I had gotten to know each other in the doctor’s office during the long orientation process and we’d stayed at the same hotel at that time. We had all started this journey together, and to hear he didn’t make it was my 1st introduction to how brutal this cancer can be.
Finally on the Mend
I still walked around the 11th floor of Brigham and Women’s Hospital, trying to get a couple of miles in a day. This ended up being over 45 laps around the 11th floor, but I wanted to heal, and it kept the boredom at bay. I was sometimes joined by other meso patients or their loved ones, but more often than not, it was just me doing lap after lap.
On day 16, my husband had to return home to Minnesota and go back to work. Unfortunately, life kept marching on, bills needed to be paid and our home needed tending to. Our dog and cat had been with family members and our baby was still with my parents and would remain there until I was able to return home. My sister flew in on the same day and took over my caregiving duties. Admittedly there wasn’t much to do until I was discharged, so she was pretty bored.
Finally, on the 18th day post-surgery, I was discharged and able to go to the house we were staying in, a place called Shannon’s House. This was a large Victorian home named after a young breast cancer patient who had to travel for treatment and was shocked at how expensive long-term stays in hotels were. Upon her passing, her family bought and managed the home so cancer patients who needed an inexpensive place to stay post-surgery or for treatment could do so without worrying how to pay for it.
It quickly became the home for mesothelioma patients across the country. We had a cozy room on the 1st level with a private bathroom. There was a large community kitchen and dining area, a large family room with a television and DVD player, with a whole library of movies to watch. There were also laundry facilities, which was a really nice thing to have.
We spent 2 more weeks in Boston. My sister took her caregiving duties very seriously and made sure I had enough food and rest, and also that I walked as much as I could. Much of this happened in the house because the weather in February is none too kind in Boston. She met and made friends with other residents and their loved ones in the house, some of whom we are still in contact with 18 years later.
Going Home to Continue My Recovery
I had 2 follow-up appointments before I was given the thumbs up to return home, or in my case, to my parents’ home. I was going to continue healing there where they could still help out with my baby.
I was still not recovered enough to be on my own, let alone care for a 7-month-old baby. We made flight arrangements and left a couple of days later.
I was flying through Minneapolis, having a quick meal with my husband near the airport before heading to my parents’ home in South Dakota. I was finally going to be reunited with my baby and I couldn’t have been more happy.
