It’s been a while. Here’s why.
It seems like everytime I get the blog back up and running, something knocks me of my stride and then this thing falls dormant.
Fear not, there have been plenty of choice iPhone apps to be released in recent months (current favs: AirVideo, Plancast, Miso) and the iPad’s offering of apps only continues to bolster a product that continually fights off my iPhone when I’m relaxing at home. Among the apps I can’t put down for the iPad are iBooks, the previously mentioned AirVideo, Flipboard and the Marvel Comics Reader. Even the iPhone games like Bejeweled 2 get a boost on this larger screen.
No, I haven’t been lacking for material. I’ve been spending most of my time looking for answers. This all started back in late-April/early-May when I felt a pain in my chest when I would sneeze. Nothing severe, and I dismissed it as a bruise or pulled muscle from playing with my 2-year-old daughter (soon to be 3 now).
Things were otherwise good. My hockey beard was coming in nicely, the Blackhawks were winning and we were on the verge of releasing our first in-house built apps at Tribune. By the middle of May, I started getting light chills in the office. They keep it pretty cool in the basement of the Trib Tower, so I put on a coat and soldier on. Release dates and projects needed attention. Another symptom started brewing around this time. Itchy skin. Everywhere. It was more annoying than something that made me feel bad but I figured it was just a bout of excema or something coming on and the body tends to self-correct those issues.
It was May 24th when the first sign of something deeply wrong hit me. I was throwing a party atop the Tribune Tower for newly hired @ourmaninchicago to welcome him to the Trib family. The gathering went off without a hitch. Lots of Blackhawk tunes, burgers and @chicagoleah even provided the keg (for once I wasn’t footing a party by myself). The party fizzled down around 8pm as there aren’t lights on the 22nd floor balcony. It was pretty much down to close friends @ernestwilkins, @brentdpayne, @bill80, @chicagoleah, @localcelebrity and a few others. I had only a few beers as I was grilling and djing and hosting and doing anything else that needed done. With the long afternoon/evening near complete, I needed to excuse myself from my peers and find the men’s room.
I never returned.
I blacked out when I arrived in the restroom and at some point before the rescue party arrived I had gotten badly sick. That night showed me who would stick with me in a time of need as the DJ equipment found its way off the roof and to a safe place, the keg was stowed and the roof was clean even before @brentdpayne and @bill80 rescued me from my tormented bathroom cell. Bill got me clothes to wear out of the building and Brent drove my car back to my place and cabbed it back into the city. Seriously badass friends. That night I had a case of what they call ‘night sweats’. Basically I drenched a king-size bed while sound asleep. I awoke the next morning in a cold sweat but felt otherwise fine. We all assumed it was something I ate, but I was suspicious that something else was going on at this point but not really sure what I would tell a doctor. ‘I went out and drank some beers, got sick and had night sweats but feel fine now?’ It didn’t feel like a cause for alarm, but I’ve been out numerous times after that evening and have yet to touch alcohol of any sort.
With the Blackhawks making their run through the playoffs, I was well distracted. Our Apptivate team was busy building their soon-to-be-released Android App and the frenzy of the games consumed me.
Then I started getting fevers.
Mind you, I felt fine all day long. My diet that I started in January had paid dividends getting me from 250 to 230. Had plenty of energy. But with the fevers, I felt my energy begin to slowly wane. I was certain I was working too many hours and the flu was about to hit. But it never did. Not only did the flu never hit, but the fevers seem to take care of themselves. Lasting only a few hours and then going away.
I knew something weird was going on now. So I, unprompted by anyone around me, made an appointment to get in to see a doc. It seemed like the weirdest thing at the time, ‘Why would I go to the doc when most of the time I feel fine?’ Thank god I just let my body make the decisions at this point because as we would later find out, something bad was brewing.
The first doc I saw was a nice gentleman by the name of Dr. Jon. They brought me in (my daughter in tow) and I explained all the symptoms that had been brewing to this point. He asked me a few questions about work, family, travel, etc. and then ordered some blood work and a chest x-ray. His biggest concern was that my workload was causing the fatigue and that my overseas travel might have exposed me to a bug that was now popping up. So off I went with his instructions to await his reply.
I didn’t hear anything from the man for NINE days.
I started to assume everything must be fine and then I got his call. It came on a really bad day, a day that a project near to my heart got scrapped. In the grand scheme of things, I need to go hug whoever pulled the plug as I would soon have much more important things to worry about.
So after waiting forever, Dr. Jon delivered the news. ‘You’re slightly iron-deficient anemic’. Like by .5. And he wanted me to have a TB test.
Oh. No. I knew it was so over. Because I knew nothing about what this man was telling me. I knew TB was a bad thing and that I had infected half the city of Chicago and that it would all be traced back to me and that my kid would have to take all these pills and that…
Yup, mind running out of control. This is when my cycle of nightly burial started. I simply didn’t know how to keep from googling my symptoms and finding every disease and plague—that I clearly had because I had a fever that night.
Amid all this, I did cut back my hours drastically. No more getting home at 3 & 4 am from the office. It was a bed by midnight curfew, self-imposed, and it was working. I felt better. But of course I did, I went from 3 hours of sleep night to 7. That’s gonna show up in the balance of things.
Completely freaked out, I go back in for the TB test. Everyone told me that this is largely just procedure and that I’ll likely come back in 3 days and it will be negative. ‘You just don’t look like you have TB,’ the nurse said reassuringly. She did voice some displeasure with Dr. Jon for his lag in following up and that stuck with me as I waited for the results. What the hell took so long to get back to me? I’m over here burying myself in mental torture every night and this guys just taking his sweet time.
It was clear, if this TB test was negative I wasn’t getting anywhere fast with Dr. Jon and I wanted to see a new doctor.
During this time period a new, more menacing symptom began to rear its head. I lost my appetite. It came on so gradual that I’m not sure when it started. It seems like I was snacking less and then slowly it got to the point where I just couldn’t eat. When this happened, the weight began falling off. I was down to 225 by mid-June. 216 by mid-July and 200 by the beginning of August. Now I realize that some of my weight loss was by design, but to go from 250 to 200 is disturbing. I look like I did when I was in high school. More on why this is occuring later.
So we go back to the Doc for the TB results. Negative. Excellent, now lets find out what the effing hell is really happening here. ‘Get me a new doc,’ I said to the scheduling person. I was to see Dr. Jeff at 9:30am on Monday, June 21st. I was satisfied with myself for the move and more so for sticking up for my health. My in-laws stress, ‘You simply have to be your own advocate sometimes or the health care system will ignore you.’ They are so right.
Back to the clinic (with daughter in tow) for my Monday morning meeting with this new guy. I am completely unsure if this will end up getting me any closer in my quest for answers but I’m oddly optimistic.
I’m brought back into the patient room, my daughter quietly playing with my iPhone, and Dr. Jeff walks in. And older man, who reminded me very much of the character Frank Lundy played by Kieth Carradine on Dexter. Don’t know why but I immediately trusted this guy. He soon showed why. Within 30 seconds of pulling up my X-ray, he spotted the problem. ‘Either you have an enlarged heart or someone has smuggled something into your chest. And you don’t look like you have an enlarged heart,’ he said very calmly. Still to rule out the enlarged heart, they ran an EKG on me and all systems checked out. He then told me that I was to go have a CT scan that day at the hospital so they could see what that was in my chest.
I was somehow relaxed about what had just transpired. I had, for the first time, a clue where the root of the problem was. The only problem I had was it was 10:30am and I still had my little one for two hours. So we headed to the park and played til we were wiped out.
After dropping the little one off at the sitter (she goes in the afternoons) I set out to get this CT scan done. Get to the hospital, find where I am suppose to go and hello administrative red tape. Turns out, I didn’t have a previously scheduled appointment on the books and my insurance company hadn’t authorized this procedure yet. I didn’t push back because they sounded like they were correct. So I was scheduled for a Friday CT scan that I would take right before I would go on a big family vacation to Minnesota. No sweat. Everyone gets what they want.
The next morning comes around and my phone rings at 8:30am. Its an assistant of Dr. Jeff grilling me on why I didn’t get the CT Scan. I told her the reason and she furiously jotted down notes to push this procedure through the red tape. This conversation made me begin to realize just how serious the medical team dealing with my case was taking this. So after dropping the little one off, I bounce back over to the hospital for the CT Scan. Was in and out within an hour. I had no idea how long it would take for the results to come back but I was pretty sure I wouldn’t be waiting 9 days to find out what was going on.
Turns out, I didn’t even have to wait 24 hours. Dr. Jeff reached me while I was taking the little one on her first visit to the library. He’s a very straightforward guy, so it shouldn’t strike me as odd that he would just come at me with the findings. ‘You’ve got a mass in your chest and it looks like it could be a lymphoma, thymoma or form of lung cancer,’ he said in a very authoritative tone. ‘I’ve got you an appointment tomorrow with our surgery team so they can talk to you about the biopsy procedure.’
Boom. As I’m driving. Trying to entertain my kid. I now know that I probably have some sort of cancer.
The rest of the day was a mess of informing the wife, close family and a few others. I wanted to keep this air tight until I knew what the hell was really going on. Its hard to explain to people that you ‘might’ have cancer. If I had cancer, I wanted to know for sure before I started sharing with people beyond the need to know group.
With the meeting with a surgery team now in the picture, the wife is officially part of the Team Courtney posse as we head into these meetings. Of course, my first meeting with the team is marred by more red tape. Can’t hospitals just work? Anyway, after a minor bit of juggling we finally get into see Dr. Khaled and this team. So the nurse brings us back and pulls up my records before she leaves. Almost instantly, we’re both staring at the screen trying to make out any morsel of information. About that time, one of the doctors on the team bursts into the room. Dr. Mike, I’ll never forget his frantic opening line. ‘Do you know why you are here?’ Both my wife and I were like the cats you see at Halloween. Hair straight up, scarred out of our minds. He has me recount the story (as I have already to this point for you) and begins showing us the area of concern on the CT scan. It seriously looked like someone snuck a ping-pong ball into my chest. He then went on to say that they suspected that it was going to be a form of Lymphoma. The reason he had such a strong feeling about my case was that his wife had Stage 4B Hodgkin’s Lymphoma 7 years prior and he saw numerous connections in our stories. While It was great to get this sort of personal outreach from the doc, it was also a little spooky as we really hadn’t confirmed what was going on yet. (see: hanging onto hope!)
In walks Dr. Khaled, a dapper Egyptian doctor that seems to run things over at UIC. He had a much, MUCH different approach to the first doctor. Calmly explaining what they suspected and what the options were for diagnosis, the stress level came down in the room dramatically. Jokes were thrown around, serious questions were asked. I’ve always had a real desire to make sure that the people who are trying to make me feel better actually like who I am. I think they tend to fight more for you than the patients who just badger them and constantly fight back against their instruction. Needless to say, my wife and I were comfortable with Dr. Khaled and his team. They pat us on our heads with their blessing to take our family vacation and off we go to Minnesota. Only later will we find out the reason they want us to take the vacation is because they realize that I won’t likely have one for a long while once chemo starts.
As we get ready to shove off to Minnesota, something becomes blatantly clear to me. All the trappings that I have used to manage and mask my symptoms and their impact are now about to evaporate as we head north. Everyday, I take care of my little one until 12:30. This had been slowly wearing on me to the point that I was now taking a small nap before heading into the office. But once in the office, the most physical exertion I would encounter would be a walk up a flight of stairs to get a Diet Coke. No biggie. However, surrounded by my in-laws (all of them, many unaware of the severity of things) I would have children expecting to play 24/7 with uncle Chris. This is something I love to do, but knew that I simply couldn’t. In all honesty, I knew outside of my daily routine, there weren’t alot of things that I could do. But one thing I could do still, was drive. Driving is a relaxing, liberating thing for me. I’ve always took off onto the open road with great glee and going somewhere I had never been was just what I needed. Well, that and my headphones. The sound of the road by itself at 2am while everyone is asleep is a recipe for disaster. So I turned this up as loud as I could and put the hammer down for Minnesota.
After staying the night at some random spot in Wisconsin, we make our destination by late afternoon Saturday. I remember that I was in a really bad mood because the US had just been eliminated from the World Cup. I was hoping to see the game, but was left to listen to it on the rental car’s XM radio. Only problem, the only broadcast available was the Team Ghana broadcast—in french. So not only am I straining to make out what is happening, I am showered in the opposing teams celebration as our boys were eliminated. Not a recipe for a pleasant ride with me. Looking back on it and the hate that I was reigning down on the soccer haters in the states, I think I have learned a lot from cancer already. See when you have cancer as a stick to measure the relative suckiness of what is happening around you, it becomes clear in a short manner of time how few things really should rile us up.
My team losing < Cancer
Drive-thru getting my order wrong < Cancer
Death > Cancer
Pretty much death is the only thing that sucks worse than cancer. Which is why so much these days just rolls off my back. Or at least, I’m trying to live that way. It doesn’t always work, but I used to get road rage in the worst way driving through the Loop in Chicago. Not anymore. I just ask God to bless the idiots and move on. Have no time to waste energy on hate when those things really don’t matter in the greater picture of life.
So we get to Mille Lacs Lake and join my wife’s family. I was actually nervous driving up as I had no idea how they might react to me. Did they all know, didn’t they? Keep in mind, I’ve known these people for close to two decades as Karen and I dated in college, so these are not strangers to me. So we eventually do get inside, and all is right with the world. Hugs all around, no mention of the potential cancer openly. We head up to our rooms. Which are upstairs. This worries me as I know I don’t have the energy to chase my daughter up and down the stairs constantly. Luckily it works out that my daughter ended up gluing herself to an older cousin and they traveled as a pack for the next 7 days.
The first two days were rough on me. No routine to fall back on, no appetite to eat—I was low on energy and ideas of how I was going to make a week here. I finally collapsed into my wife in a bit of a mental breakdown, I was simply unsure how to cope in such a different environment. No one but myself really knew how much the symptoms had hindered me because in Chicago, I knew how to work around them. I think just leveling with my wife exactly what I was going through finally put us both on equal footing with how I was feeling and with it I bought some peace of mind. That night I went onto play a riveting round of Wii Sports with my nephew and niece. I felt a little bit like myself again. But that’s not to say it lasted. Later that evening, I woke up around 2am. My entire body was on fire and I was having a much harder time breathing. With no idea where any medicine or a thermometer was, I simply went downstairs and ate popsicles for a good hour. My body cooled down and I slept like a baby. But something was still badly wrong.
The remainder of our stay at Mille Lacs was largely uneventful. Lots of relaxing on a boat pretending to know how to fish and talking Arkansas football with my father-in-law. Pretty much how a vacation for me should be.
Driving back, I had high hopes to see an old friend of mine who helped me get my start in the industry while in Tulsa. The timing just didn’t work out and I simply didn’t have the heart to say ‘I was your Best Man and I might have Cancer.’ The whole thing just seemed kinda rude to spring on someone who was busy. So we carried on to the Mall Of America. I felt surprising good, even going on a rollercoaster that flipped me upside down a few dozen times. Somehow I saw that as some sort of test that the docs would use to validate that I was healthy. I was simply trying to prove to myself I wasn’t completely broken.
With the family thoroughly exhausted, I put them to bed in the car at 6pm and put the pedal down for home. We ended up making it to Madison, Wis. before bedding down for the night. My birthday was the next day and I wanted to be well-rested. Rest or no rest, I simply didn’t have the energy to enjoy Madison like I wanted to. So we headed home and with the car unloaded I was in bed by 6pm on my birthday. My wife and little one even baked me homemade cupcakes but I simple didn’t have any appetite to eat them.
Work had been going pretty well up to this point and throughout this ordeal, I had still yet to miss a day of work or an assignment. This was all about to change as Dr. Khaled’s team were eagerly awaiting a chance to get started on me so we could get to a diagnosis. The Doc was very clear that he wanted to be as minimally invasive as humanly possible. So the first attempt to diagnose what was going on would be done through a needle biopsy. Make no mistake, my needle biopsy was much more entailed than one that might be performed on an arm or neck. This would be a CT-guided biopsy as they had to go around arteries and though the lung to get to the mass. So, July 7th I undergo the first attempt to diagnose the issue. The procedure itself goes off without a hitch, but there is a complication. It now appears that I have some fluid building around my right lung. While I am somewhat panicked, they assure me that it won’t take much to drain the fluid and that it might help diagnose what’s happening. Relaxed and ready I go in for the afternoon procedure to drain this fluid. This isn’t an experience I would suggest to others. The problem I had wasn’t the procedure itself but the pain meds that are used for this. Basically they give you novicane in your back. Not a big deal, but they hit something they shouldn’t have. Immediately I was in pain with my stomach doing backflips. I remember telling the nurse that I was going to empty my bowels right on her table. My heart rate dropped to 80 over 50 and I was immediately on fire. If it wasn’t for a nurse by the name of Georgia Cash fanning me with a piece of paper and talking me through it, I think I would have passed out. With the complications, they only drew a sample of the fluid. It came back negative for cancer cells. A positive result would mean I have a very advanced stage of cancer.
So the waiting begins for the results. 5-7 days is the window to sit and wait. Meanwhile, I’m having a hardtime fathoming just how much trauma my body had been through. I was back in the office the next day (against doctor orders) and immediately knew why. I wasn’t to lift my child, at all, for fear that my lung might collapse from the procedure. But we knew we were close to an answer so it was worth it. I hobbled my daughter to the sand pit at the end of the street and we made the best of it. It was July 14th when the news came back that the needle biopsy had been unsuccessful in diagnosing the mass. We were leveled, mainly because we knew that the next biopsy was much more invasive and it would be a week away with answers even further away. Still it was our only option and we just did what we could to get family support in place as the next procedure would involve a hospital stay of at least 5 days.
The next Monday, I was to go into the hospital for some prescreening tests to ensure I was fit for surgery. That morning, I took my daughter to the park for the longest 45 minutes I’ve ever spent trying to entertain her. I simply couldn’t move. I couldn’t breathe. And nothing is worse than your daughter wondering why you won’t chase her up the slide like you ALWAYS do. Anyway, I knew what was happening at this point. It was the fluid on my chest. I simply had no idea how much was there. See when the body fights off a infection inside itself, it often will try to ‘drown’ the offending invader. This is how my fluid was forming. My body was doing it in my own defense.
So we get to the hospital. I try to put on my best face and attitude but the numbers simply didn’t tell the story I needed to. My oxygen levels were low (90%) and my heart was racing even when I was sitting still. So they sent me for an echograph to get a better picture of my heart. What we found is that my heart was basically swimming in fluid too—and I was severely dehydrated. Fluids pumped into me and my Wednesday check in for the surgery was now looking like Monday. With no family support to help with the baby and no way to warn work that I wasn’t going to be in (dead phone) I begged to go home. Turns out you can leave a hospital anytime you like, but it’ll be against their wishes. So I went home and tied up every loose end I could to prepare for what was coming.
The next day was a series of firsts. I’d never stayed overnight in a hospital before. Certainly not to undergo a serious surgery (the fluid make this a serious ordeal). That night, my in-laws brought me a prayer cross. I cried endlessly. That was a sign that I was really in trouble at first that has since become my ultimate beacon of calm and support. I was too young to be in that room. Too healthy to be around sooo many sick people. The noises that night didn’t help. Later I would discover headphones to be a great equalizer but the first night I didn’t know how to operate the bed so I didn’t sleep until 3 or 4 and when I did sleep, nurses were busy in the room trying to get my vitals. Let it be known, you don’t go into the hospital for sleep.
The next morning came quickly and in no time Dr. Mike was in my room explaining exactly what to expect today. Being the only doctor to ever have provided me with their cell phone number, Dr. Mike and I have actually ended up becoming friends—something that I would have never imagined based on our first meeting. Still, this morning was classic Dr. Mike with him dropping a bombshell or two as we talked. First, the procedure would involve them cutting three holes in my side to shove a camera in and go get a sample of the tumor. While this is occuring, they will be draining the fluid off my chest and heart. Sounds all good so far. Basically, before they finish up, they like to have the lab make a prelim on the diagnosis of the sample they extract. This is where it gets very scary, because Mike informs me that if they get anything but Lymphoma they will crack my chest open and perform the same basic surgery that open heart patients go though to remove the mass. Keep in mind, to this point it had been ‘three small holes down the side, piece of cake.’ Now its ‘Unleash the Kracken!’
Within moments of the ‘pep talk’, they wisk me away to prep me for the operation. I say my goodbyes to the wife and in-laws and sit in this lime green room for what feels like forever. I look around me. I’m the only one sitting up. Everyone else is in clear pain or duress and ready for relief. Me, I wanted to bolt. But I knew we needed answers. About the time I start to calm down, the anethstesia team surrounds me. They’re all talking to me, distracting me I assume, as one of them is working on an IV that went bad overnight. So as she removes that and starts to replace it I am talking to the head anethstesiologist and … I wake up in ICU.
This incident took me days to finally figure out.
All reports from the doctors were that I was completely awake entering the operating room, loopy from the drugs and making jokes, but awake. The procedure went fine, but they had a few surprises. One, we didn’t get an immediate diagnosis on the tissue sample which left the docs with a coin flip decision to crack my chest open or await the results. My docs told me over and over that they thought this was Lymphoma until proven otherwise and they stuck with their instincts. The next surprise was the amount of fluid that was removed from my chest. Somewhere in the vicinity of 4 liters was drained off during the procedure. Think about removing a gallon of milk from your chest and you get the picture. Finally, this procedure required the docs to collapse my right lung so they could get to the mass and remove the sample. The surgery went about three hours, so my right lung was collapsed for at least that long. After they wrapped up, they got as much fluid as they could out of my chest and then reinflated the lung. Problem: their was still some fluid in the chest cavity and now my lung just absorbed it. This wasn’t apparent while I was still being assisted breathing, but the trouble became readily apparent when I started to wake up and the anethstesia team removed the breathing tube. It was shared with me that I simply couldn’t breathe on my own and that they had to put the breathing tube back in me while I was awake. This apparently was quite a traumatic scene, so traumatic that no one on the anethstesia team wanted me to remember it so they hit me with what I endearingly have been referring to ‘a scrambler’. Its why I don’t remember going into the operating room, its why I don’t remember joking with the docs and its why I don’t remember the trauma of not being able to breathe and having a tube rammed down my mouth.
So I finally come around 3pm, surrounded by the in-laws in ICU. Being placed in ICU after surgery was expected as they want to monitor everything. I try to pat my chest to see if they did the big surgery and too my relief they hadn’t. But I glanced at my wife and she delivered the unfortunate news that they weren’t able to diagnose it, yet. I was hoping for a nugget of insight after all that I had been through that day. Soon after coming to my senses, I began fighting with the breathing tube. This wasn’t in the plan and limited my communication with everyone to scribbling on a piece of paper. When I finally got comfortable with the idea of it being there a nurse would come in for vitals, nudge me and I’d fight with the damn thing all over again. The key to dealing with a breathing tube is not moving. So there I was, four IVs in my arms, three tubes out of the right side of my torso, breathing tube in my mouth and a catheter. A effing catheter. No one mentioned messing with my junk. But it wasn’t like I was going to be moving anytime soon, so I kinda had to have it. All this over some mystery meat in my chest. Thankfully, my father-in-law hung through the night with me. I must have scribbled out half the Razorbacks playbook in talking with him. We had to get more paper from the nurses. I’m not big on just droning away watching TV, so talking football was the best thing I could do to get my mind off the situation even if I couldn’t exactly talk.
I previously mentioned that you don’t go into the hospital to rest. Nurses constantly coming in to take your vitals, technicians coming through to get X-rays at 4am and the doctors in and out all morning. Just not a good situation for those trying to rest and heal. ICU takes this idea an amplifies it with every beeping, bleeping device you can possibly imagine. It’s like rolling your hospital bed onto a Vegas casino floor—by the slots—only without the bonus of drinks and a chance at winning. My father-in-law came prepared for the situation and broke out his earbuds and started listening to sports radio to drown out the noise. While I normally wouldn’t fathom sleeping with headphones on, this suddenly seemed like a great idea. He grabbed by noise-canceling headphones out of my bag, hooked them up to my iPhone and Bob Marley took care of the rest. Well, I got some sleep.
The days that followed were a slow process of the occasional removal of tubes and visits from friends and family. By Saturday, I was in a private room with a chance to go home and see my little one. The only thing holding me in was the fact that we still didn’t have a diagnosis. The docs felt it was just easier to keep me in the hospital in case they had to break my chest open rather than ask me to come back in. Dr. Mike came through on Sunday with the preliminary news and he was almost dancing when he told me Hodgkin’s Lymphoma. I was a little taken aback as I was still holding out hope that it was an infection or something less menacing than cancer. He would go on to explain that ‘if I had to have cancer, this is the one to get’ and ‘no matter how bad it is, it have a high cure rate.’ While I completely agree with him now, all I could think of at the moment was ‘here comes Chemo.’
In short order, I was discharged and other than the weeping from the wounds (which must heal on their own, no stitches) I was free to go home. That did come with a few stipulations. No picking up anything over 5 pounds (see: child), call if I have a fever over 101 and generally don’t be an idiot. After several days of being on a bland diet and the loss of the fluid weight, I was now down to 200 lbs and getting weight back on my body became a focal point for the family at home. The only problem was that I still had no appetite. Somehow under the watchful eye of the in-laws, I manage to rebound some of my energy during the week to the point they headed back to Little Rock on Thursday morning.
Of course, I took this as the sign that I was ready to head back to work. I would discover that this was a bad idea. While my energy was there when sitting in my office at home or talking with my family on the couch, walking several blocks just to make it into the office wasn’t something I had tried in well over a week at this point. My body was deconditioned from being largely on my ass for an extended period of time. Add to it that the wounds from the surgery would leak with greater frequency with the drive into the office and the walking around and you can see why heading in Thursday was a bad idea.
While I worked from the house on Friday, I had a greater issue to handle. It’s one thing to skirt the rules on when you should and shouldn’t head into the office, the rules about fevers and surgery are pretty cut and dry. That night, I had a fever of 101. I was certain that it was being driven by the Lymphoma, but I still had to call the doc if I was going to be playing by their rules. He overall agrees with me and asks me to take some Tylenol and see if it breaks. If it does, likely Lymphoma-driven. If it doesn’t, I could have an active infection brewing from the surgery. Sure enough, the fever broke and the doc only asked that I swing by the ER in the morning for a blood draw and chest X-ray simply as a precaution so they could compare it against my records. I was happy, my wife was happy and we all slept soundly that night.
The next morning, the wife brings me in some breakfast before I shoved off to the ER. Little would I know it would be the last food I would get until 6pm. I had never been into an ER prior to that morning and I have the distinct impression that its kinda like the land of misfit toys. No communication and everyone seems to have their own independent ideas about what your issue might or might not be. Dr. Mike had called in the instructions for why I was there, but an elevated heart rate started the ER docs on their own crusade. First, I clearly had a blood clot. Wisked away to get a surprise CT scan. Once I was clear of a blood clot I was told I had a case of hospital-acquired pneumonia brewing. My doctors couldn’t determine if there was or wasn’t anything to the findings, but in cases like mine where your heading toward chemo a case of pneumonia could throw everything off-schedule. So they shoot first and ask questions later and next thing you know, I’m back in the hospital because I might be sick.
WTF?
That’s really all that went through my head. What about my weekend with my wife and little one? What about the fact that I drove to the ER and parked at a meter and had the car with the carseat in it? What about the fact that no one could help watch the little one and that my wife was stuck at home while I fought on my own in the ER? And where was the damn food?
That night was easily one of the more tortured moments of this ordeal as I simply couldn’t wrap my head around why I was there. I began thinking that this was just going to be the way it goes and that ANY time I have the slightest thing go wrong, I would sneeze my way back into the hospital. I could tell the nurses had a similar reaction to my situation. ‘You don’t look like you have pneumonia,’ they would say to comfort me not realizing they were just stoking the rage boiling inside me.
OF COURSE I DON”T HAVE PNEUMONIA!
It was something my wife would say to me later that weekend that would turn me out of my sea of darkness and doubt. “This isn’t who you are and this isn’t helping you and its hurting me to see you this way,” she sobbed as she tried to explain how I wasn’t the same patient who had just been in the hospital a week earlier. This was all a mental game that was kicking my ass. I had no way to question the doctors as they all agreed that I might or might not have a problem and I felt fine. So I put my faith back in the Lord that whatever was happening was happening for a reason and tried to run back toward my good humor act and making nurses and doctors like me.
If anything good came of the hospital trip, it was that I got to meet with my Oncology team early. I was suppose to come in on Monday and discuss the schedule of staging appointments I would need to fulfill to properly stage the cancer. But here I was in the hospital already, so they opted to just start with the procedures. This got us off to a rocky start because as much as I wanted to get right into the staging part of the process and agreed with everything they had in mind, no one opted to actually tell me what we were doing. So when Monday morning comes and someone shows up at my hospital door telling me its time to go get my chemo port installed, I was taken slightly off-guard. The biggest concern was that I still had three holes in my side and a suspected case of pneumonia brewing. Was this really the time to cut on me some more? A junior member of the Oncology team came by and apologized for the mixup and simultaniously enraged me by stating ‘you might as well get something accomplished during this hospital stay’ indicating that no one on their team suspected pneumonia.
Sigh. Let’s get the effing port in.
The technicians installing the port couldn’t have been more on their game. Keep in mind, I was having severe trust issues at this point. Loaded into the coldest table I may have ever laid on, the nurses went over every step of the procedure making sure that all the uncertainty and nervousness about what was about to happen was alleviated before we started. I was so relaxed that I slept right through it under some twilight anethstesia.
The other pieces of the puzzle weren’t so fun. A breathing test that just enraged the biopsy wounds. A heart test that involved radioactive blood. A full body PET scan that left me literally radioactive for a day to anyone within 5 feet of me. And of course, the bone marrow draw.
I obviously escaped from the hospital. No I didn’t have pneumonia. And yes I was still irked at the fact that they held me in. But we managed to get two weeks of staging tests done in two days. If there is any silver lining to be found in that stay, this would be it.
So now I wait. I know that Chemo is coming. I just don’t know how much or how long. I know I have cancer, I just don’t know how bad.
I often think of the people who came before me on this road. The human guinea pigs that took the doses of Chemo, or the first radioactive injections. How did they ever get this system right? How can anything that makes me harmful to others within 5 feet of me possibly be helpful to me? How do I know the system will work for me?
Those are all huge questions that are simply too big for me to fathom. I’ve put my faith in God, that God’s got this covered. There is really nothing I can do at this point but take the treatment and let the doctors drive. But I trust that God will be guiding their hands and watching over the treatment of my body and soul through this process.
I hope you’ve found this as informative as I have found it to be therapeutic. I don’t wish my situation on any of you, but if you or a loved one has to endure a situation of this magnitude just remember a couple of simple things.
1) Positivity is your best offense/defense
2) A little perspective can go a long way
3) God has got this
Thanks for reading. —cc
