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The entire 11th floor of Brigham and Women’s Hospital in Boston is dedicated to thoracic patients. They have lung transplant patients, collapsed lung patients, esophageal cancer patients and, of course, extrapleural pneumonectomy or EPP patients like myself. The nurses and residents are highly skilled and know exactly what to do to care for us.
The first few days after surgery are a blur; I was in the ICU for 3 days. During that time, I had to pass certain milestones before I could move to the step down ward. The first thing I had to accomplish was “dangle” that was sitting on the side of the bed with my feet “dangling” No easy task when there are about 14 tubes connected to you. After I accomplished dangling, I got to graduate to sitting in a chair-- woohoo! This was a huge step and meant I actually got up out of bed. After sitting for a couple of hours, I would need to sleep. It must be what a newborn feels like. Simple tasks would exhaust me.
The second day in the ICU I had a very special visitor; my dear friend Doug, who I had met back in December at an MRI appointment. He too, was a mesothelioma patient and was scheduled for surgery the next week. He told his wife before coming to see me that if I looked awful, or was in bad shape, he wasn’t going to go through with the surgery. The moment I saw him and his wife, Jane, I lit up-- smiled from ear to ear and was elated to see him. His first words to me were, “Damn, now I have to go through with the surgery.” I was limited to 15-minute visits with people, so they couldn’t stay long.
Not long after, the nurses got me up and walking with the help of a huge walker contraption. It was tall, had a place for the oxygen tanks to sit and another place for all the IV bags to hang. I would lean forward on it, my hands holding onto two handgrips on the top for balance, and I would do laps around the ICU. This exercise I would do a few times a day-- getting up and walking is so important after chest surgery so fluid doesn’t settle in the chest cavity. After 3 days, I was well enough to go to the step down unit called the TICU; this was probably the most unpleasant part of my hospital stay. The TICU was a ward type of room with 4 beds, sectioned off by only curtains for privacy. There were two shared bathrooms, one on each side of the room, and no television. This was before the days of WIFI in the hospital rooms and before the days of smart phones, iPads, e-readers, or any other such items that make a hospital stay a little more bearable. I had an mp3 player and a cd player with headphones-- that is what kept me sane during those long days.
I was the only female in this large room; two of the other patients were also EPP patients, and the 4th was a collapsed lung patient. We were all in about the same place in our recovery. During those next 5 days, my kidneys stopped functioning correctly. It was a side effect of the heated chemotherapy. The staff would come in and check my creatinine levels to help determine my kidneys' ability to filter fluids. If creatinine levels are too high, your kidneys won't function properly. My creatinine levels kept creeping up and up and, by the 4th day, I was told if they didn’t start declining by the morning I would have to have dialysis. This scared me. I had already been through the wringer and now I was up against one more set back. I didn't want to have to do dialysis. I started praying and praying hard. I told my husband to email everyone on our email list and to call my parents and ask them to pray-- this is all I knew how to do.
The next morning, when my blood work was done, I was fully expecting to have to start dialysis. My medical staff found that the creatinine levels had started to drop! During the night, my kidneys had started functioning and were filtering the fluids like they were supposed to-- no dialysis for me! Later on, my dad told me that he had a dream the night I asked him to pray; a bright column of light entered my room through the window and angels rode it down from Heaven. He saw them surround my bed and start singing and, when he woke up, he knew that everything was going to be ok. Miraculous healing? I think so no matter what anyone thinks. I hang onto that.
From that day on, I started recovering really well, and so did my kidneys. They started working so well that they were filtering too much, the opposite problem. I now didn’t have enough magnesium and potassium, so I was put on supplements to keep those levels normal. If you've ever had to drink potassium drinks, you would understand how unpleasant this is. It’s a nasty tasting concoction they mix with cranberry juice in an attempt to make it palatable, without success. I some how managed to choke it down and, slowly but surely, my kidneys started to behave themselves.
I was finally moved to a normal room in yet another wing of the 11th floor. Every day, Cameron would come to the hospital, go to the family waiting room, update emails and print off the pictures of Lily that my mom would send us. We literally watched our baby grow through grainy black and white print outs of pictures, but they were our lifeline to our little girl. I had a huge stack of these photos I would show to the nurses, who would look at them while trying to hold back the tears. My beautiful little girl made me fight harder each day. During my stay, I walked countless miles around the 11th floor. If you do something like 24 laps, it equals a mile. They told me to walk, so walk I did. By this time, my friend Doug had had his surgery and was also recovering on the 11th floor, in another wing. So during those walks, I would make sure to stop in and see him. He had his ups and downs as well, but in no time was out of the hospital and on his way home. I also met another woman in the hallway, Sandy. She had her surgery the day before mine and we were introduced by the social worker for the mesothelioma program. We called ourselves “surgery buddies” and exchanged information. We still keep in touch to this day.
It was those last days in the hospital that was the hardest. My husband had to return home on the 17th of February, and my sister arrived to take his place. As much as I wanted him to stay, bills needed to be paid and he had to get back to work. Danna, my sister arrived late in the afternoon and was a little nervous. It is always a shock to see someone after surgery, no matter how well I was doing; I was still not the vibrant sister she remembered.
It was on February 18th that the seriousness of this disease and the people it affects hit us. Doug’s wife, Jane, came to see me that day to tell me that our friend Bill had his surgery on the 17th. Cameron and I had met Bill and his wife Gloria back in December, became fast friends, and stayed at the same guesthouse. We had spent our evenings together and were quite close. Knowing that Bill was quite a bit older, I was worried about his surgery. Jane’s news for me was not good-- Bill didn’t make it. His heart simply could not take the stress. The tears flowed for him, for Gloria, and their family; all of who had been there to support him. They had left sometime during that night, and we didn’t even get a chance to tell them how sorry we were. When I called Cams to tell him, he didn’t take the news well. It was the one time he gave into the sadness, the anger, and the fear. He told me later that after we hung up, he collapse to the floor and curled up and just sobbed. Bill’s death hit us all very hard, and we vowed to fight on, in his memory. That was the first of many heartbreaks.
Finally, 18 days after checking into the hospital, I got the wonderful news that I could leave. I was not able to leave the Boston area for a couple of weeks yet, but I was no longer a patient IN the hospital! My sister was there to help me with my things; we jumped into a cab and made our way back to Shannon’s House, a group home for adult cancer patients and their loved ones to stay during treatment and recovery. That big old, Victorian home in Brookline was to be our home for the next 2 weeks and my life with one lung was just getting started.
Resources for Mesothelioma Patients and Their Families
- Request a Free Mesothelioma Treatment Guide
- Connect with Top Mesothelioma Doctors
- Locate the Nearest Comprehensive Cancer Center