Left Leg: Left Message

Over the past week, I’ve started having pain in my left leg. This isn’t the leg that started the whole mess, and as far as I know my cancer hasn’t metastasized to that leg. Our best guess has been that the pain is being caused by my white blood cells being repaired due to my treatment.

That doesn’t lessen the pain, however, and it had been getting worse each day. By Friday night of this week I was taking more than my usual amount of pain killers and was still in so much pain that I could barely sit with my kids for our weekly movie night.

I woke up around one in the morning with my left leg feeling like it was being torn off, and moved out to the living room to let my wife sleep in peace while I grunted and groaned. I finally decided to call the non-emergency line for my doctor’s on-call nurse, to tell them what was happening and see if they wanted to schedule some tests for this other leg.

The first time I called, the automated system hung up on me.

The second time I called and managed to leave a message. I got a call back within two minutes, from a different doctor who told me he had no idea who I was or why I was leaving him a message at one in the morning.

The third time I called and left another message; As far as I know this one went to the right place. I took more pain killers and stayed up until about three thirty, then went back to bed once the pain had subsided.

When I woke up this morning, the pain was gone. Not lessened, just gone. I have no idea what caused the pain, or if it’s going to come back, but for right now it seems to have gone away. I’m scheduled to meet with my oncologist first thing Monday morning, so maybe he’ll have an idea just what the hell that was all about.

Pop Secrets: Jobs (Part One)

I’ve had a pretty strange life, especially when I was younger. In the event that this whole cancer thing doesn’t end well, I’d like my two sons to know about all the dumb things I’ve lived through and poor decisions I’ve made. In the hopes that my children will learn from my many mistakes, I present: Pop Secrets.


Dear children,

For as long as you can remember, I’ve had a very nice and relatively stable career as a software developer. It’s a satisfying job and provides a great living, but this wasn’t always the case. In fact, I only started doing it full-time in 2004. What was I doing for the previous twenty-seven years?

Job #1: Paperboy – 1989

When I was in middle school, a man came and gave a presentation about what a great gig delivering newspapers for the Salem Evening News was. In my head I’m picturing a drunk hockey player, but I think that was a separate speech, about not being a drunk hockey player.

The paper guy (Paperman?) told us that if we worked hard, we could earn $100 over the summer. That was about the price of a Nintendo, so the man was speaking my language.

Historical Note: It just occurred to me that you’ve probably never seen a paperboy in your life, outside of those 80s kids movies I show you that always have a surprising amount of racism and boobs. There are two reasons for this:

  1. Newspapers are just about dead. They were pretty popular until about 1998, when the internet showed up and everyone realized we didn’t have to learn to fold cheap paper in order to get sports scores.
  2. Most paper delivery jobs have been taken by adults. The money that used to go to ten kids on bikes now goes to one adult driving a station wagon very slowly. Why would adults need to take on this job? Because capitalism broke some time in 1985, and we’ve all been gradually sliding into a cartoon hole labeled “Poverty” ever since.

Anyway, I did not do well as a paperboy. I think I lasted for about three weeks, during which the following happened:

  • I became convinced that one of my customers was secretly Bobcat Goldthwaite.
  • Someone found my account book and became very upset that, instead of using customer names, I recorded payments under names like “Fat Lady” and “Idiot”
  • A middle aged man burst into my childhood bedroom to tell me I was fired and to take the bright orange bag I used to carry papers.

That was a really cool bag.

Job #2: Comic Book Store – 1991

When I was fourteen, a comic book store opened within walking distance of my house. I forget the name of the store, because it was something strange like “Legions of Heroes 2,” which I still don’t understand because there was no Legions of Heroes 1.

It was run by two fat guys whose names I forget, so I’ll call them “Larry and Barry”. Larry would spend most of the day sitting on a stool in front of the store’s display window, pretending to lift weights. Barry was married, but any time you had to squeeze past him he would say “Boop!” and thrust his pelvis into your rear end. They also owned a comic book store, so they were the coolest adults I’d ever met.

I hung around the store constantly and eventually started “working” there. Not as an official employee, because I was too young and they couldn’t actually afford to pay me. Instead I was paid in store credit, $5 an hour, which was actually a pretty great deal. I went there after school, and would sort boxes of comics for the afternoon. Then I’d take my pay in back issues of X-Men.

I spent a lot of time alone as a kid, but I always felt welcome at the comic book store. There was a side room in the store that I’d just go to hang out in sometimes and read comics or play a tabletop RPG. And for all their weirdness, Larry and Barry were always very nice to me.

I remember spending one Easter Sunday hanging out at the store (Barry was Jewish) and listening to my brand-new copy of Weird Al’s “Off the Deep End.” I also remember clogging the store’s toilet, and desperately working to move boxes of comics out of the way of the slowly growing pool of toilet water.

This was at the height of the comics boom of the early nineties, so I lucked into being there at a pretty great time. I was working the day that Superman died (the first time), and for the first issue of Wizard (you have no idea what this means, but your step-mother is impressed).

I genuinely enjoyed working at that store. Then I had some family issues and moved to the next town over. Going to work went from a fifteen minute walk to an hour long bike ride, which was too much for a lazy teenager. The store closed the next year after the comic market crashed, and I think there’s a tailor in that spot now.

Job #3: Ball Grabber (?) – 1993

Growing up, my best friend Dave was a year older than me. In the summer of 1993 he had a job at The Willows, Salem’s amusement park and boardwalk that today provides affordable living for local pigeons.

His job was in the “Casino” of the boardwalk, which was one of those places with arcade games and tickets that you can cash in to buy a lollipop or a car stereo. You remember that place on Lake Winnepesaukee where we always end up playing Deal or No Deal? Picture that.

One of the games in this casino was a sort of ball bingo*, where you got a certain number of tiny white balls and rolled them down a ramp, hoping they fell into holes that would make a line. Frequently, their balls would get stuck*, or roll to the end of the ramp and just sit there. This made people angry. Instead of having the angry customers/players/suckers climb up onto the thing to grab their balls*, they hired a teenage boy with a large stick that could be used to grab people’s balls*.

*Balls.

This was Dave’s job, and as far as I know he performed it well. One day, he couldn’t make it to work. I forget why, maybe he was sick or visiting family or died or something. The important thing is that he somehow talked his boss into giving me the job for one night.

Technically, I was too young to have this job, being only fifteen. But I’ve always looked older than I am, and most people around this time thought I was a college student, so nobody was concerned about that.¬†What they were concerned about was that I appeared to be using every recreational drug known to man.

I wasn’t on drugs, because Nancy Reagan and Alf had told me they were bad, but I did have pretty severe allergies. Allergies that were going crazy due to the industrial fans at every corner of the place that blew all sorts of pollen and ragweed into my face. So each time a customer yelled out “Hey, my balls are stuck!” they would turn to see a very large man, face covered in snot and eyes watering, constantly sniffling, holding a long pole with a grabber at the end and mumbling “I’ll save your balls.”

I only worked that one night, and Dave got yelled at for recommending his obviously drug-addicted friend. I still think about that night every time I hear the classic song “Now That We’ve Found Love (What Are We Gonna Do)” by Heavy D & The Boyz, which was played on the casino loud speakers every seven minutes.

To be Continued

 

(Sad Trombone Noise)

This weekend is my son Logan’s 14th birthday. Today we got a card in the mail from his grandfather, and a box addressed to Logan. The box was from a distribution center, so we weren’t sure who had ordered it for him. After dinner we gathered in the living room for him to open it up and see his birthday present.

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Happy Birthday!

It was a swab kit for Logan to get a sample of his DNA to see if he’s a viable donor for my bone marrow transplant. Just what every teenage boy wants for his birthday: Four sticks to rub in his mouth and send through the mail.

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.

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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.

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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.

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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.

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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 Way Things Is (as of September 27th)

Things are going about as well as can be expected at the moment.

As of my last PET scan, all of the visible cancer has been eradicated except for the original spot in my right femur. The fact that this spot hasn’t been taken out by my chemotherapy worried the oncologist enough to change my treatment regimen. The new drugs are much more powerful, and are causing a lot more fatigue than I’d had previously. For a few days after my treatment started, I was barely able to get out of bed. At one point I tried to play a video game and found that the tips of my fingers were too fatigued to work correctly, which was a surprise.

My legs and hips are in a lot of pain, but I have medication to help manage it. I am getting a bit concerned about the amount of pain medication I’ve had to take lately, but I’ve always been paranoid about prescription drugs. I’m currently taking between 10mg and 30mg of percocet each day, so we’ll see how that effects me long term.

Psychologically, I’ve taken a bit of a hit lately. I’ve been able to keep up a pretty positive attitude about all of this, but a recent talk with the staff who are managing my bone marrow transplant shook me a bit. The doctor casually mentioned that the transplant means there’s a 10-20% chance that I’ll be dead before Christmas, which something of a shock. He later walked it back a bit, saying that those numbers included all transplant patients, and I was on the younger and healthier end, but still… those numbers aren’t something I like thinking about.

My next round of chemotherapy starts next Monday, and two weeks after that I’m going in for more PET scans and tests. The results of these tests will determine whether or not we can proceed with the transplant, or if I will need to start a new chemo regimen with the addition of radiation therapy. I should know a lot more then.