Continued from Part Three

During the ambulance ride from one hospital to the other, I struck up a conversation with the EMT who was in the back with me, handling my IV fluids. I mentioned that I wasn’t from the Kansas City area and that the pizza here was terrible. He told me a friend of his was from Rhode Island and had opened a restaurant called Providence Pizza, serving east-coast style pizza by the slice. Even better, it was only about twenty minutes from my house. I may have gotten way too excited about this information.

After spending a week at St. Luke’s East, which was a clean, modern and very nice facility, arriving at the St. Luke’s downtown location was something of a shock. The building itself was old, and poorly maintained. Each hallway felt long and under lit – my wife compared it to the hospital from the 1981 movie Halloween II.

I also noticed a strange smell permeating the building. I assumed it was a temporary thing, but I’ve since learned that this hospital always has this smell. The only way I can describe it is as if someone ordered french fries covered in vinegar and then left them in a trash can for two weeks. Every room, every hallway of this hospital has this smell at all times.

I was taken to my new room in the ICU and hooked back up to all my usual machines. Because they would be constantly drawing blood and injecting me with all sorts of drugs, they installed something called a PICC line into my arm and chest. This is a line of tubing that went into my veins near my heart, and came out of my arm. Rather then constantly injecting needles into me, the nurses could now just attach syringes or feed lines into the external ends of the PICC.

What my PICC line would look like if I had no face

Having come out of my fever, I remember a lot more about my time at the second hospital. Every morning a line of 7-10 doctors would come into my room, surround my bed, set up a collapsible podium, and describe to each other what my bowel movements were like. They wouldn’t actually speak to me about this, they just had notes. Someone, somewhere was closely monitoring my waste and making sure these doctors had up-to-the-minute information about it.

There was a lot of concern about my lungs, as my oxygen levels were still low. My room had no bathroom, just a toilet in the corner, but getting to and from it became a struggle; I would have to wait a few minutes each time I stood up in order to make sure I wasn’t going to pass out.

To help determine what was going on with my lungs, one of the doctors told me they were going to give me a Bronchial Biopsy, or a “Bronc.” He said they would be doing this early the following morning, so I was not to eat or drink anything starting the night before. Morning came, and the doctors were nowhere to be found. Then it was afternoon. Finally, around 4:30 in the afternoon, after approximately eighteen hours of no food or drink, the nurse told me the Bronc had been put off until the next day.

The pattern repeated itself the next day, with my morning appointment pushed back further and further, as I got angrier and thirstier. Finally, one of my doctors came in and told me the Bronc was cancelled, that they wouldn’t be doing it after all. He left, and I ordered some food and liquids. As I hung up the phone from my order, a different doctor came in and asked me if I was ready for my Bronc. I told him it had been cancelled, and he told me “Oh no, I just talked to that doctor in the hall. We’re going to do it after all.”

It was around this point that I realized two things:

1. My doctors did not appear to have an actual plan.
2. If they did have one, they felt no obligation to share it with me.

As they began to sedate me for the Bronc, I told them that I typically need more sedation than most people. I tend to fight back when something is causing me pain, even when I’m sedated. Over the years I’ve woken up to a lot of very angry dentists.

They assured me they knew what they were doing, and moved forward with the procedure. It was successful, but when I came around afterward they appeared concerned. The head doctor handed my wife a napkin with a list of drugs on it, and told her “Your husband needed much more sedation than we typically give our patients, and he was still conscious and talking during the operation. The next doctor you see, give them this list and tell them that’s what was needed to knock him out.”

I also started my first round of chemotherapy at this point, which was nothing like I had thought it would be. I had imagined radiation treatment, but all it involved was hooking me up to several different IVs and pumping me full of various drugs. Several of the drugs were so toxic that the nurses had to wear contamination suits while handling them, which is a less than comforting sight.

After my four days in the ICU, I was transferred to their “Neuro” wing to finish my recovery. My new room was at the very end of a long hallway, as far as possible from the nurse’s station and all other rooms, and the bed was undersized and uncomfortable, but I didn’t care. At this point, after nearly two weeks in the hospital, I was just desperate to get home.

Concluded in Part Five

Continued from Part Two

The next seven days are a blur.

I was admitted to the hospital (St. Luke’s East), and hooked up to oxygen. While they still weren’t certain what had caused my original issues, the immediate concern was my sepsis. My doctors needed to deal with my raging fever and blood poisoning before they could begin to figure out what type of cancer I was dealing with.

I have very little memory of this time, as I was in and out of consciousness and suffering from a pretty high fever when I was awake. I remember constant sweating, and having bags of ice and a circular cooling pillow to put around my neck to help keep me cool. I can’t remember any of the nurses or staff from this time, but I do remember watching parts of various movies on my room’s television. And I could swear I saw the same episode of Family Guy multiple times.

Lookin’ good while my brain cells boil away

I remember my wife, Haley, being by my side every minute she could be. She talked to every doctor and nurse that came in, trying to find out more about what was happening to me, brought me food from home, hooked up a fan to keep me cool, and spent hours learning about symptoms and medical conditions to try and help get a diagnosis. I have a vague memory of a nurse being rude and handling me roughly, but I distinctly remember Haley then going and talking to someone and I never saw that nurse again.

I say this with no exaggeration or hyperbole: If it wasn’t for the efforts of my wife, I don’t think I would be alive right now.

After four or five days, we were able to fight off the infections enough to start working on a diagnosis. The first step was to sedate me and drill into my femur in order to get a biopsy. They were unable to get a good sample, and during the sedation my oxygen levels dipped even lower, which meant that the next biopsy attempt would have to be done without sedation.

That, I remember very clearly.

I was taken to the operating room and laid on my stomach while they injected a local anesthetic into the rear of my pelvis. Then they began drilling into the bone. The pain wasn’t bad, but the feeling of having a hole drilled into the back of my pelvis, and the smell of burning bone, will likely be with me for the rest of my life.

Thankfully, this biopsy was successful, and I was finally given a diagnosis: Anaplastic Large Cell Lymphoma. It’s a rare type of T-Cell Lymphoma (non-Hodgkin), and is an aggressive cancer of the blood. In the simplest terms, my immune system had gone insane and begun attacking parts of my own body. The pain I had been feeling was because my blood cells had somehow determined that several of my bones were foreign objects and needed to be removed.

It’s a small thing, but having a name for what was happening to me really meant a lot. Up until this point, I hadn’t realized how much mental stress was being caused simply because there was nothing I could point to and say “This, this is what’s causing me so much pain.”

Now that we knew for sure that it was cancer, and what type of cancer, it was time to start treatment. But for that, I would need to be taken to a different hospital, one that was better equipped to offer chemotherapy treatments. And so, seven days after being admitted to St. Luke’s East, I was loaded into an ambulance and driven thirty minutes north, to the St. Luke’s main campus in downtown Kansas City.

Continued in Part Four

Continued from Part One

The same week that I learned that my spine, pelvis and leg were riddled with cancerous lesions, my two boys left to spend the next six weeks with family in New England. I did not want to put a downer on their summer vacation, so I did not tell them about the latest news.

This was a difficult decision, but I still believe it was the right one. I made a similar decision when it came to my wife, however, and that was a mistake.

As I’ve said before, I love my wife so much that it hurts. I hate causing her pain or anxiety, and I knew what would happen the moment she heard the word “cancer.” Because, up until this point, I had not been officially diagnosed as having cancer (only “anomalies”) I decided to wait until I knew more.

I had an additional MRI scheduled for that Friday night, and Haley and I made plans for me to pick up dinner on the way home from my appointment. The scan went much as before, although laying on the flat surface for so long was noticeably more painful on my legs and hips. After about an hour and a half of scanning, the technician broke in over the intercom to tell me that the radiologist had spotted some “problems” with my scan, and would I be okay going to the emergency room right away?

I was a little tired of phrases like “anomaly” and “problem” at this point, and asked them to tell me what they were actually seeing. The radiologist told me that the damage to my femur was so extensive that he was concerned it could shatter at any moment, and that he wanted the ER staff to see if they needed to brace my leg with a metal rod.

I called my wife and told her I would not be picking up dinner.

She immediately drove to the hospital and met me in the ER waiting room. We were eventually admitted and spoke to a doctor who expressed frustration at the radiologist and told us that there really wasn’t much he could do. He advised me to make an appointment with an oncologist, and told me I should stay off of the affected leg.

Because of my selfish decision to not talk to my wife about the possible cancer diagnosis, this was the first time she was hearing anything about it. She went from waiting to have a nice dinner at home to sitting in the emergency room being told that her husband likely has a cancer that has eaten away most of one leg.

I made an appointment for the next week with an oncologist, and we went home to rest and worry. I told my work that I would be taking a few days off, and we spent most of our time looking up types of cancers and their mortality rates.

On Wednesday of that week, I started feeling a bit under the weather toward the end of the day. My head started to hurt, and I was running a bit of a temperature. It went away after a few hours, so I assumed that I was coming down with a cold or something similar.

The fever returned the next night, and refused to go away. I began to sweat profusely, and my head felt awful. We called the on-call nurse and told her my symptoms, and she advised me to drink fluids, take Tylenol, an rest.

By Saturday, my fever was at 102.9, and I was barely able to function. Haley drove me back to the emergency room, where they admitted me immediately. The staff seemed very concerned with my vital signs, which showed that my blood pressure and oxygen had been drastically lowered. They told us that I was in sepsis, and that I needed to be admitted immediately.

Continued in Part Three