The Diagnosis (Part Five)

Continued from Part Four

My last three days in the hospital were spent in that isolated room at the end of the hall in the hospital that smelled like spoiled vinegar.

By this point I was desperate to get home. I would see my doctors once each day, when they would stop by to check on my breathing and tell me I was progressing well. Haley was eager to have me home as well, and ended up cornering one of my doctors in an elevator, to get him to give a date when I could leave the hospital.

I was feeling much better, my breathing was back to normal, and the pain in my leg was gone entirely. The lower halves of both legs had swelled crazily, which made walking a strange experience, but the nurses assured me that would go away after a week or so.

IMG_20170714_193754

My swollen legs and feet made me look like Fred Flintstone from the knees down

Twice when shambling back to bed from the bathroom, I suddenly leaned over and vomited unexpectedly. I wasn’t feeling sick, didn’t even know I was going to throw up – just sort of reflexively leaned over and out it came. Both times I pressed the emergency call button for a nurse, and both times it took them between five and ten minutes to make their way out to the end of the hall to see what I needed.

Finally, after fourteen days in the hospital, I was free to go. I had to wear a breathing mask to protect my weakened immune system, and I was exhausted and weak, but I was so happy to be going home that I burst into tears in the car. The fight against my stupid blood cells was just starting, and there was a lot of difficulty ahead, but whatever happened from then on, I knew what I was fighting against and I’d be able to do it from my own home.

IMG_20170724_150650

Happy to be home again, after losing both my hair and 30 lbs

The Diagnosis (Part Four)

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.

PICC-line-front-labelled_tcm9-45583

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

The Diagnosis (Part Three)

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.

IMG_20170705_110615.jpg

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

The Diagnosis (Part Two)

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

The Diagnosis (Part One)

On April 28th of this year, I woke up around four in the morning with a sharp pain in my right leg. Assuming I had slept on a nerve wrong, I took several ibuprofen and tried walking around the house.

The pain only got worse, and progressed to the point that I could no longer stand, or hold a conversation that didn’t include mostly grunts and gasps. Haley, my concerned wife, brought up that the pain may be due to a blood clot, which would be a dangerous development.

She managed to get me out to the car, and drove me to the nearby Emergency Room at Lee’s Summit Medical Center. I was admitted, and laid down in a triage room, while the nurses asked me to identify the source of the pain.

Unfortunately, the pain had no singular source, so I was reduced to running my finger down various parts of my upper leg and telling them “Here, and also here.” After a few minutes of this, it became clear that the staff thought I might have come in looking for drugs.

The pain slowly abated while I laid in the triage room, and the doctor eventually came in. He bent my leg a couple of ways, told me it wasn’t a blood clot, and suggested that I had indeed slept on a nerve wrong. He prescribed me a course of steroids, and a painkiller called Tramadol.

I went home, took the pain killers, and worked from home that day. I took the steroids as they were prescribed, and the pain went away for a couple of days, before returning just as strong as before. I tried taking the Tramadol, but the only effect was to make me throw up all the water and sugar-free Powerade I’d been drinking to stay hydrated.

This time, the leg pain did not go away on its own. I had noticed a pattern that the pain got much worse in the middle of the night, and one night a few weeks after my initial visit I was forced to return to the Emergency Room. Describing the source of the pain was still a problem, as it seemed to be coming from everywhere at once. The best way I could explain the primary pain was that someone had their fistĀ inside my thigh, and was squeezing my femur as hard as they could. This also caused what I took to be sympathy pains emanating from my groin, hip, and knee.

While I don’t like pain, I think I have a fairly strong tolerance for it, but when it got rolling, this pain was the worst I’ve ever had. I once had an exposed nerve in my jaw that drove me to tears, and that was as close as I’ve come in the past. This pain was so strong that it left me laying on the couch, rolling back and forth, only able to make grunting noises and remember to breathe.

The second visit to the ER left me with another steroid prescription, and a prescription to Percocet. I’ve always had a strong fear of the dangers of prescription drugs, and what they can do to otherwise good people, so I tried to only take the Percocet when there were no other options. It did seem to take some of the edge off of most severe pain, but it always came right back.

giphy

Dramatization

At this point, it had been almost a month since the pain began, and my work was starting to suffer. I had some very large projects with deadlines that were closing in real fast, and between my taking time off due to pain, and all the doctor’s visits, things were starting to pile up.

What I found almost as bad as the pain itself was the humiliation. People would see me walking as if I had a broken leg, and naturally ask me what the problem was. Having to tell them “I don’t know” almost always led to some raised eyebrows.

Beyond that, it felt like none of the medical professionals I saw took my situation seriously. They would suggest that I had pulled my groin, or maybe just twisted my hip funny. They told me to rest, and it would go away on its own.

Needless to say, it didn’t.

I worked with my Primary Care Physician to schedule some tests, which they took their time doing. It was over a week before I got a call from a scheduler, and then I was told that the Blood Clot Ultrasound I was referred for would be scheduled for the following month.

Telling them that we had already ruled out a blood clot seemed like a wasted effort, so I continued in pain and waited weeks for the appointment. The test came and went, and the nurse happily told me that there was no blood clot and I should be fine. The fact that I was clearly not fine didn’t really seem to register.

I scheduled another appointment with my Primary Doctor, who was again baffled as to what it might be. He suggested that it could be arthritis, and referred me to an Orthopedic Surgeon for an MRI. This would take another two weeks.

On June 15th, the day I was scheduled to meet with the Orthopedist, I woke up again with the pain worse than it had been before. The muscles in right leg seemed to be clenching and unclenching on their own, each time sending a wave of disabling pain through my body.

After spending an hour dealing with the pain, waiting for it to fade away, Haley and I decided that we had no choice but to return to the Emergency Room. I was again brought into a triage room and told that there was really nothing they could do. I was in too much pain to speak, so my wife tried to explain that this had been going on for over six weeks, and that we were desperate for help.

I did feel lucky in that the on-call ER doctor seemed to take my situation much more seriously than the nurses. I was injected with steroids and a stronger pain killer, and after twenty minutes or so the pain had lessened to the point that conversation was possible.

The ER doctor studied my leg, trying to find any areas of numbness, bruising, or sensitivity to pain. He suggested that I may have had a “severe groin pull,” which was sending pain down my leg in waves. It sounded ridiculous to me, but I was up for any possible solution at this point.

I told this doctor that I had an appointment with an Orthopedic Surgeon later that day, and he strongly advised me “Make sure they MRI your pelvis.” I thanked him for his help, and went on to see the Orthopedist later that day.

After a long wait, the Orthopedist saw me and had me raise and lower my arms, then hit my knees with a reflex hammer. He then told me that the problem was in my spine, and that he was ordering an MRI of my spine. I gave him the advice passed on from the ER doctor, but it seemed to have no effect.

The following Monday I went in for my MRI, and they explained that only my spine would be scanned. I again passed on what I had been told regarding my pelvis, and the staff seemed to understand, but told me they could not change the location of the MRI after it had already been scheduled.

The MRI was a little intense, and very, very hot, but otherwise not too bad. They gave me headphones to listen to music, and it only took about 30 minutes before they remembered to actually turn the music on.

Despite the issues with the placement of the MRI scan, I was feeling pretty good about my situation. I agreed with the ER doctor that the problem could be a pulled groin, and I was happy to finally haveĀ some kind of diagnosis to tell my co-workers.

A few hours after the MRI, one of the assistants called me and told me that there had been some “anomalies” in my scan, and that they were ordering a follow-up bone scan for the next day. I asked the assistant what the the “anomalies” were, but he refused to tell me.

A quick aside: I will talk about this much, much more in later posts, but I love my wife very much. She is the most amazing person I’ve ever met, and she has more love in her than anyone on the planet. She also has issues with anxiety, and I always try to do and say things in a way that will cause her the least amount of anxiety.

I didn’t feel like it was a good idea to leave the idea of “anomalies” rolling around in my wife’s head for a couple of days, so I started going through all the online patient paperwork I could find regarding my tests. It was there that I found the following passages (emphasis mine):

There are innumerable spherical bone marrow lesions present throughout the thoracolumbar spine vertebral bodies and pedicles. Additionally, spherical lesions are seen in the sacrum, iliac bones, and acetabula on the large field-of-view survey/scout sequences. These lesions demonstrate T1 and T2 signal hypointensity and many of the lesions demonstrate mild STIR signal hyperintensity.

Numerous spherical bone marrow lesions present throughout the thoracolumbar spine and osseous pelvis as described. These lesions are highly suspicious for osseous metastases.

Here’s what all those words mean: Parts of my spine, and of my pelvis, had been “punched out” and were now missing. After reviewing the tumors (or “lesions”), the Radiologist came to a conclusion: I have cancer.

Continued in Part Two