We are taking kind of a unique approach to this week’s blog. We’ll be writing the blog simultaneously and telling the course of events over the past week or so back and forth. Eric will be color coded in a blue font color and Cari will be color coded with a red font color.
It all really started quite a couple of months ago when I began to develop a pneumonia in my lungs. This was during the brain cancer and the bone marrow cancer treatments. The cancers were top priority and the pneumonia was put on the shelf to be taken care of later. Well, somehow I managed to defeat cancer both in my brain and my bone marrow. Having now beaten cancer seven times, we had to see how bad of shape my lungs were in.
One night while we were at home after all of these cancer treatments, Eric’s cough had gotten worse. We had a family friend take us to the hospital, where they collected sputum samples, and did some scans, along with a bronchoscopy to figure out what was growing in his lungs. After all of these tests we were told that he had a fungal pneumonia, and we were sent home with some medications in hopes that it would heal that way. It was either he could take the drugs at the hospital, or I could give them to him at home. We opted to do it at home, so I was hooking up his IV nightly to try and battle this infection.
As the days grew on, the coughing in my chest seemed to get worse and worse. The pain increased and sleeping at night was impossible. Furthermore, the mucus substance that never seemed to stop being produced from my lungs smelled and tasted absolutely terrible. The combination of the putrid substance with the extreme amount of coughing caused my gag reflex to go off all of the time forcing me to vomit. Through all of this I hadn’t developed any fevers as I stayed as diligent as I could with all of my medications. I continued to try to live as normal of a lifestyle with my wife, Cari, while improving the condition of my health.
It’s true. We’ve always tried to be as normal as possible while being home. I probably made him clean the kitchen a couple times during this period. We want to be as normal as possible while dealing with our situation. While we were home there was one night that he seemed to be heading towards having a fever. I tend to get worried, and I made him call. Luckily his fever had gone down on it’s own. At this point we knew that part of his lung was necrotic, we just didn’t ever really know how much, and we were thinking that still, antifungals would kill off this fungus. He was scheduled to go in for an MRI on his brain this past Monday so we figured that since he was seeing his doctor, we would discuss all of our concerns then. Monday morning came, and Eric and I were watching T.V. when he got a phone call.
It was the hospital. Change of plans. Instead of coming in for the MRI on my brain, they wanted me to come straight to the BMT unit to be admitted for closer care. The plan was to do an MRI and now also a bronchoscopy. The reason they wanted to do the bronchoscopy was because they had some conflicting results from past bacterial and fungal cultures and they wanted to be absolutely sure that they were giving me the appropriate medicines for the appropriate infections that I had…therefore they needed to solidify exactly what type of infections I had brewing in my lung. After the results came back from all of that, it was quickly determined that any amount of medicines given to me to treat my lung infections were completely pointless, because my entire lower right lobe of my lung was completely dead. Surgery was the only way out of this one.
I usually spend all of my time at the hospital with Eric. This time however, I opted to spend the night up in Manitowoc, at my parent’s house because I had to work the next day, and it would save us on some gas. I got a text message from Eric. At this point we were mostly texting as Eric’s cough was so bad, it was hard for him to talk, and he couldn’t really have a conversation on the phone. He informed me they would be doing a surgery on his lungs. He didn’t know when, he didn’t know too much, just that they were doing it. I called his nurse and got the scoop of what was going on. This was Thursday around noon. Sometime on Thursday we were informed the surgery would be at 8am on Friday. I asked Eric if he wanted me to skip work, and come straight down Thursday afternoon. He told me to work, so I did, and came straight down Thursday night, and slept at the hospital. When I got to the hospital, Eric was coughing and in a lot of pain. It was pretty constant all night. I was scared because I hadn’t talked to the person who was doing the surgery, I had no real idea of what was to come other than they were taking the lower lobe out, and he was miserable. There was nothing I could do.
As Cari said, the coughing and puking the night before the surgery was immense. Mentally I wasn’t in a very good state either. From the things I was hearing from nurses, physician’s assistants, doctors, and surgeons, nothing sounded good. I was extremely nervous and again, the coughing wasn’t helping the situation at all. Sleep was impossible. At some point in the night I must have fallen asleep, but that didn’t last all too long as everyone started coming into my room rather early in the morning to prepare for the operation. 8:00 rolled around pretty quickly and I was carried off on my hospital bed to the operating room. Within minutes they had me started up on general anesthesia.
I actually walked down to as far as they would let me with him. When he had the brain surgery they let his mom and I wait while they prepped him. This time, they barely got him in the door before doctors and nurses had started asking him questions. I asked how long the surgery would take, hugged Eric, told him I loved him, held in my tears, and walked down to the family center. I checked in there where I got a restaurant style buzzer that would go off if anything came up during surgery. I sat down and looked at the screen to see what his operational status was. Literally within ten minutes of them bringing him to the operating room, they had him marked as “in procedure.” I sat there for a bit trying to figure out what I would do with my three hours of free time. I found out Lindsey and Mary had decided to stay and were in the cafeteria waiting for me. We spent the time down there, and while we realized it had hit the 3 hour mark and were on our way back up to check, the buzzer went off. I was nervous. I walked in and saw the chaplain standing there. My first thought was, “Okay..you’re my favorite chaplain to talk to but I really hope you’re not here for something I don’t want to hear.” Turns out he wasn’t. He was really just there to sit and talk and make sure I was doing okay and to talk to the family. While we were talking to him, the surgeon called and said he would be right in to talk to us.
Lindsey, Mary, me, and the chaplain walked into the consult room. The doctor introduced himself and explained everything to us. They had considered taking just the infected dead part, but since it was so dead, and it looked literally like swiss cheese, they opted to remove the whole lower right lobe of his lung.
However; from a surgical standpoint, the doctor said he was looking pretty good. We would most likely see him back up on the BMT unit in about 2 hours when he was out of recovery, unless something changed and his breathing tube had to stay in. Lindsey left after knowing her brother was OK, and Mary and I went back up to his room to wait for Eric’s dad to show up, and Eric to come back to a new room so we could move all of his stuff over.
I woke up in the recovery room in an incredible amount of pain. I felt confused, lost, and didn’t know what was up or down. Within a minute or so I started to gather myself and realize where I was and what was going on. Someone from transport carted me back to the BMT unit where Cari, my mother, and my father were waiting. The rest of the night was one long painfest that I was not having fun at.
Eric was pretty out of it. However; he was NOT coughing at all. At some point in the night his oxygen levels were hitting normal levels, I was amazed he did not have to be on the oxygen tank at all, but anytime he would move, he would be in pain. One of the antifungals required him to take benadryl as a pre-med before he took it. He took the benadryl, and with the combination of that and pain medication he was finally really asleep. I decided to take that opportunity to go home and shower. I just got back and was talking to a nurse at the nurse’s station and had heard the phone ring. It was Eric on the line asking for his heat to be turned up, and the nurse said he sounded upset. I rushed into his room to see what was wrong. He was having a common reaction to his medication. His nurse stopped it, got it under control, and got him back up and running. They also increased his pain medication, and were acting like a human PCA pump. There’s a shortage of actual pumps out there, so every hour, on the hour, his nurse would come in and manually give him some medication. I was very impressed to see him actually sit up in his bed, on his own last night. He doesn’t remember a lot of yesterday, and today has been really rough for him, but with what they did to him, I am in awe at his strength and determination to get through this. Right before we started writing this blog I told him that he had all the right in the world to throw a huge pity party, and here he was, saying it could be so much worse. I’m going to let Eric fill you in on how today went.
I woke up today in more pain than I was in yesterday. I had a massive flood of doctors and visitors in to see me for a large variety of reason, but mostly to discuss everything that has transpired over the past few days. As I lay there in my bed, I had a drainage tube sticking out of the side of my chest draining fluid from my right, a catheter placed so that I wouldn’t have to get out of bed to go to the bathroom, an arterial IV in my left wrist, extra oxygen through my nose, pulse ox device on my finger, blood pressure cuff, and of course…my PICC line.
The surgeon was the first to come in. We had various questions for him but the one question that really stood out amongst all of the other was answered with, “Yes, we had to remove some parts of your ribs to gain access to the lung to be able to remove the lobe.” For all of you out there wondering…no they did not put the rib pieces back. I guess my dream of becoming a professional boxer is out of the question.
Everything has just been so insane, it’s so hard to fathom. The next step from here is to hopefully get this drainage tube removed from my chest cavity. I had the catheter removed earlier tonight as it was really started to bother me. Once the drainage tube is removed, I imagine they will be sending me home on some anti-fungal and anti-bacterial medication. Sadly, this is only the short term worry for us. We both know that the leukemia will return. We just have little to no idea when that time will be. Once these infections clear up, I will be starting a consolidation chemotherapy regimen that will extend that period of time as long as we possibly can.
Eric and I, as well as the rest of our family are beyond grateful for your love and support through all of this. We’re hoping that things keep going better than expected from here on out, and we can pick up the pieces and go home and be as normal as possible for a while again real soon. We have a whole list of things we want to accomplish, and even though we know it will be back, we intend to fight this thing, until there is absolutely no fight left. Right now there is fight left. Again, we really appreciate all of your love and support through everything. Cari is the most amazing woman in the world,and Eric is by far the most amazing man in the world, and we love each other more than anything in the world…love always wins.