Monthly Archives: May 2013

Health Status Update

I awoke this morning. In a bed.

Not a hospital bed. Not THE hospital bed I’ve awoken in for the past 19 days, with it’s peculiar angle that has accumulated a building pain in my back, and it’s now sunken mattress where the weight of my body has created an unmistakeable indentation. No, not that bed.

An actual bed, in a quiet room, in my parents quiet house. I woke at 8:15, without a doctor pressing down on my abdomen, without a nurse checking my vitals, without finding myself surrounded by students fumbling with needles and their incredible social awkwardness. I woke to nothing but the general feeling of discomfort that comes with not taking my pain pills for a period of 8 hours.

I have been sent home from the hospital. By no means am I 100%, but the doctor’s figured if I was going to have bowel issues that involved continuing to take a mild laxative throughout the day, I should just do it at home and not in the hospital environment. They’ve given me a free pass to come right back in should things get out of control, but we’re basically working through this issue over the phone should anything problematic arise.

I haven’t offered much detail about the past week because, honestly, I’ve been too  busy dealing with the discomfort, fatigue and frustration in getting my bowels to work properly. I passed the days on a swinging pendulum that had me moving from intense abdominal pain to the constant interruption of a working laxative to the general sense of fatigue and emptiness that comes after the laxative does it’s job. I’ve just been constantly spent and so to even think of writing a decent blog post or something that wasn’t weighed down by such negativity was a task beyond my abilities.

But now I am here, at my parents and continuing the recovery process, sleeping in a soft bed, passing the time with the same laxatives and feeling, if not better, than at least less annoyed than when in the hospital environment. No beeping machines. No delayed nurses when I need pain pills. No interruptions. No attachment to machines. Just the coccoon of my parents house and the potential to actually go meet friends instead of them coming to see me.

And I made it here just in time. Because I’m withering away. The liquid drip diet the hospital had me on since surgery, coupled with my distance runner metabolism, added to the draining qualities of intense laxatives has me looking freakishly skinny. And yes, I know, I’ve ALWAYS been skinny, so you can imagine what I mean when I say I’ve gotten even skinnier. My arms are noticeably more spindly. My legs are birdier than before. And my face…well…the bone structure is prominent against my sunken and almost hallowed cheeks. It’s a sight that has even disturbed me, which says something as during high intensity training I’m always considering if I could lose another few pounds leading up to race day. But this beyond successful race weight.

I. NEED. FOOD.

And so whenever possible I’ve been trying to eat high calorie, high protein foods that are easily digestible and not gas forming, which isn’t easy. My stomach is still reeling from the surgery, as is to be expected, so even feeling hungry has been problematic and gorging myself just isn’t an option. The pain would be too much to bare. Still, anything I’m getting in has to be better than what I was getting at the hospital.

A friend has set up a “Meal Train” program for me too, which is an online program where people sign up for a specific date, make a batch of food and deliver it to my house. It’s such an appreciated gesture and will be one of the most important aspects to my recovery leading into chemotherapy. Food has always been my fuel and now it is also my complement to healing.

Thanks to everyone who was able to get on the meal train and help me out. I truly appreciate it. Hopefully, as my strength builds, I’ll have more posts up quicker…I currently have a backlog of subjects I’ve been working on. Thanks again everybody.

Fundraiser

A handful of friends have come together and planed a fundraising bike ride on my behalf for May 30th. The ride will be a casual group starting in Broad Ripple and cruising to Tomlinson Tap at the City Market for drinks. Sun King has donated a keg and all proceeds will go towards my medical fund. There will also be a silent online auction containing products donated by a slew of companies around the country…there is some really awesome stuff in here. I will update the blog when that goes live.

For now, the Legs & Lungs site is hosting t-shirt sales for the bike ride on the 30th, but these can be shipped to your home if you can’t make it to the ride. The first 100 shirts were donated towards my medical fund and 10 dollars from each additional shirt will also go to the fun. These are limited edition L&L shirts with the “Raise Hell” theme printed on the back. See all the details here…

www.teamlegsandlungs.com

Thank you.

The Peripheral Pain Again

I have been absent from my blog the past week because, primarily, I haven’t been able to muster the energy or moments without pain to write, which brings me to this disclaimer.

There has been a great deal of good in this experience, whether they have been realizations I have come to personally or just the people who have taken care of me on a continuous basis, but for the sake of brutal honesty (and some entertaining reading) I have yet another less than pleasant set of experiences to share as I continue to hope the pain I’m dealing with leads to others being able to handle theirs should they find themselves in my position. I promise, however, positive posts will soon follow.

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The doctors came to my room a few days after leaving the ICU to continue checking on my progress, continuing to praise my physical advancements, attributing my quickened recovery to my health and running prior to entering the hospital, and generally checking on my state of well-being. They were quite pleased, except for one thing.

“Have you passed gas yet? Had a bowel movement?”

I bluntly answered, “No”, every time.

“Ok, well, no problem, it will come. We’ll just wait. This is common and as soon as it happens we’ll see about getting you out of here. Everything else looks great. You look good, you sound good….we just need to get your bowels moving.

What I was to learn is that after a major surgery such as mine, the body unsurprisingly shuts down some of it’s functions for one reason or other. To conserve energy, out of shock, to redirect resources, etc. The bowels shutting down are fairly common, but add to that the constipation inducing nature of pain medication and you have a serious waiting game on your hands before things get moving again. So there I sat, feeling so good that I felt awkward being in the hospital environment, except for that pesky “lazy bowel” as it is called.

So we waited. And waited. And waited…..nothing. No passing gas. No nothing.

The docs then decided to switch me from a nutritional drip to clear liquids and then quickly to solid foods, hoping to stimulate the gut and kickstart the bowels into functioning again. I called up one of my scheduled visitors who brought me a requested meal of soy yogurt, medjool dates and peanut butter, as I wanted to keep it light instead of jamming a vegan cheesesteak down my throat. Plus, I, surprisingly, wasn’t that hungry. Actually, when I started eating the food, I found that I wasn’t that hungry AT ALL and could only get down small bits, slowly, before pushing everything aside due to a growing discomfort in my stomach.

I was afraid of this.

Before going into the hospital I had a lot of difficulty eating due to the compressed nature of my abdomen and was hoping that after a great deal of the cancerous mucin was removed that the compression would lighten and I could take down foods with ease and without pain, but I instantly started feeling the same discomfort when I started eating, as if there was some sort of “blockage” in my intestines that was keeping everything from flowing easily. I was essentially backed up.

And I didn’t have a bowel movement.

I tried to eat more throughout the day, but found the pain increasing and only hoped a bowel movement would relieve the pressure, but to no success. The doctors, increasingly worried, gave me a double dose of Milk of Magnesia (doesn’t actually contain milk) and a stool softener, hoping to make the body do what I couldn’t. I threw back the toothpaste tasting liquid and promptly fell asleep for the night, waiting for the relief to come and the pressure to leave my abdomen, but instead I woke up at 2:30 AM with an incredibly painful gassy feeling consuming my body, heightening with every attempt to roll over and completely ruining a night of sleep as I struggled to block out the pain.

I woke the next morning to the doctor who pushed down on my distended belly, made a face that expressed both frustration and confusion and then immediately ordered a CT scan, wondering if there was an intestinal blockage that could be seen through the images  in order to give them another plan of action. 30 minutes later a transport cart took me from my room and wheeled me down the CT room for scans, as I suffered through the horribly uncomfortable pain and tried my best to stay still as the machine took photos. Very slowly, and very gingerly I managed to slide back onto the cart to be wheeled back up to my room where my parents were now waiting for my arrival.

I lay in bed, exhausted, in pain, and staring into the wall as if I could see through it. My parents tried to ask me questions, but I could only muster broken responses. The nurse, running through the procedure of taking my vitals suggested upping some of my pain medicine doses to help alleviate a pain that now seemed to only be increasing with each passing hour as we waited for a response from the CT lab. She added a second shot of Dilaudid pain medication to the drip that was already filling my system, but to little avail. I was becoming increasingly inconsolable and began twisting and turning in bed, squeezing into the fetal position and back out almost rhythmically. This continued on and with the nurse still at a loss, she added a couple of Narco pills to the mix in hope they might act on a different area of pain, and they might have, but the overall discomfort that now had me writing back and forth in near agony was not going to be medicated away.

Then to add insult to injury, the amount of pain medicine my body was now processing was compounded by an intense feeling of nausea from the combined meds, so not only was I still in incredible pain, but now I felt miserable and on the verge of vomiting the entire time. My parents sat next to me, helpless, and frustrated, when we got the word from the doctor that the CT scan showed no blockage and our next step was to get a gastric enema, which would help us look for more blockages further up the colon and, more importantly, offer some relief from the pressure in my abdomen as they drained away some of the built up stool.

There was one problem with this. In order to get images of my potentially blocked intestines, I would need to drink another normal amount of “contrast” fluid, diluted in a disgustingly sweet concoction of fruit juice that always seemed to be the worst part of the experience on the whole. The nurse casually placed a large styrofoam cup of liquid in front of me and I started at it for a few seconds, turned to my mom and said, “This isn’t going into me. There is no room! That’s impossible.”

But without much other choice, I began taking gulps of the liquid, stifling back gags and trying to get as much down as soon as possible to minimize my disgust. And just as I suspected, as I forced it all down, the almost intolerable pain in my abdomen began to multiply as the liquid added an even greater pressure to an already overstuffed cavity. I had enough…and told the nurse so.

“I’m sorry..that’s it. There is literally no way I can drink anymore. I’m going to throw up.”

But it wasn’t even the throwing up that concerned me so much as it was the increased pain I had just brought upon myself. I was now out of my head in agony.

Another hour of writhing pain passed, I estimated anyways, as by now I had completely lost track of time in the distraction of the experience. I didn’t know if an hour or 5 hours had passed since the morning began. Then just as I thought I was going to pass out from the added pain and frustration the transportation cart came to the room and, now unable to walk on my own, they pushed it to the side of the bed for me to transfer positions. The nurse mercifully gave me one more dose of Dilaudid to help me stay as calm as possible during the procedure (which was going to be crucial), then I was pushed out of the room and towards the imaging area.

Now the fun began.

In order to do this properly, I needed to be awake as the technicians were going to ask me to move around, change positions and basically needed me to communicate with them through the discomfort. And this is how it went.

I was transferred to an in incredibly uncomfortable glass table and laid on my side, my top leg pushed passed by bottom leg and was instructed to breath deeply and slowly, relaxing as much as possible. With only the most casual of warnings the tech then slowly, almost too slowly for my comfort, slid a long rod into my rectum, repositioning it periodically as he pushed through impacted stool and let it rest deep inside my colon. When it was in far enough a balloon at the end of the rod was then inflated, which served to both hold the rod in place and create a barrier for the liquid contrast that was to be injected into me and held throughout my intestines. The contrast would allow them to take the images and determine if anything was backed up.

For the next 20 to 30 minutes I was directed this way and that, to roll on my left side, then to my back, then to my right, then back again. The table was dropped as a large camera swung over my abdomen, it’s huge lead bags hanging from the side swinging into my stapled incision and causing further and unnecessary pain on top of the rest. The table was tilted forward, almost upright, as I struggled to take deep breaths, my fingers clutching the side of the table as the pressure in my abdomen shifted and the pain followed. The inflated balloon inside me pressed against my bladder and other organs, triggering a constant need to go to the bathroom. The rod pressed against my rectum, causing sharp pains and an incredible discomfort. The contrast slid around my body as they rolled me this way and that, tipping the table up and down, essentially shaking it through my body to look for blockages and help soften the stool stubbornly residing in my upper intestines.

It. Was. Miserable.

But soon, it was over. They relieved a bit of pressure by extracting a small amount of stool through the enema tube, then rolled me on my back, by now my pelvic and hip bones sore as hell from the pressure of the glass table, and drained the rest of the now softened stool from the tube. Finally, the balloon was deflated and both it and the rod were pulled from my rectum as I lay on my back in state of complete defeat. The tech asked me, “Are you feeling better? Does the pressure feel lessened now?”, but honestly, I couldn’t tell. I think I was so tense from the experience that I couldn’t relax enough to gauge my pain, and of course, I will still laying on the hardened glass table.

They switched me over to the transport cart, wheeled me out into the waiting area to be brought to my room and….THEN I could feel it. The pressure…it was gone. Mostly. Enough anyways. The incredibly painful gas feeling was gone. The accumulation in my lower abdomen was gone. Generally, aside from the trauma of all that had happened in the past 15 hours, I felt pretty good….relieved. I was wheeled up to my room where my parents were still waiting, laid on the bed, and took a few moments of calm before I relayed the gastric enema procedure to them.

And then I went to the bathroom, on my own. I had that elusive bowel movement I needed to have. Then shockingly, I looked at the clock to realize almost the entire day had gone by and it wasn’t too far off from bedtime, which was fine by me as I felt emptied in so many ways. I had a couple more bowel movements that night and then……well…..nothing.

My doctor informed me that after looking at the images he didn’t see any blockage or scar tissue obstruction from surgery, but rather just “a boatload…and I mean a BOATLOAD” of impacted stool. He could offer no explanation for it, but simply said that I should have more bowel movements coming now as everything fell back into place…except…again…..nothing.

A day went by, then two, and no more bowel movements. It was almost like we were back to square one, except with a lot less stool than previously. The body was STILL not cooperating and I was still experiencing “lazy bowel” post-surgery. But this time I was determined to avoid any increasing pain or stool accumulation, so we decided to try another stool softener and Milk of Magnesia to get things moving.

I took the prescribed dosage and….nothing. Absolutely nothing. No tummy rumblings, no gas, no nothing. It was time to bring out the big guns. Before going to bed the nurse brought me a 12 oz bottle of Magnesium Citrate laxative, another absurdly sweet “lemon flavored” carbonated beverage that would essentially work to clear me out. And clean me out it did.

I didn’t get a lot of sleep that night, nor the next day as my time on the toilet seemed to grow longer and longer. I won’t say it was fun, of course, and the experience was so intense that it was hard to even say it was a “relief”. I mean, it was great that I was finally getting emptied out once and for all, so there was going to be NO residual leftover from the past 2 weeks and my gut could get back to doing what it is supposed to be doing, but the pain, horrible flushing feeling, and everything else that comes along with a chemical concoction like this really sours the experience. Needless to say though….IT WORKED.

And finally, after countless days, pushing through another bout of extended abdominal pain, shots, procedures, helplessness and frustration, I finally heard my doctor say those precious words,

“You can go back to a regular diet.”

And that’s exactly what I did yesterday, starting slowly anyways. I’m taking it easy with soy yogurt and smoothies, but did indulge in a cookie. Today the doctor wants me to actually try solid foods, to again try and get the gut working again. For whatever reason I’m feeling much better about it this time and have a sense that everything is going to start working properly again, which would be great because we are now talking about, if everything goes well, getting out of here in the next day or so. I’m ready to feel the sun instead of just look at it. Sit outside passing the time instead of in a hospital bed. Walk around the house freely instead of wheeling some contraption next to me. And so much more.

Again, it seems this cancer I’m dealing with has been the least of concerns throughout the ordeal. It’s everything on the periphery that wears you down, sucks the life out of your body and leaves you empty and desperate. Right now, I just wanna get home so I can forget about everything on the periphery and start steeling myself against the larger battle that is still to come.

Sorry for the rambling friends, but thanks for being here with me.

Routines (Un)Interrupted

It is the rare individual that doesn’t live a scheduled life in some way, as our hours are often dictated by seemingly undeniable external forces, whether they be work, hunger, family, biology, etc. I’ve come to toe that line of routine somewhat precariously, often finding an urge to throw off all the shackles that have shaped my life against my desires, but all the same enjoying the sense of calm and comfort with knowing what is to come, what to expect and what I can control.  I am undoubtedly, almost viciously, a Type A personality. I crave simplicity and order in all things and try to create my life around these dynamics.

So it was no small thing when after having finally managed an insane, n0n-stop daily schedule that started at 6am and took me from bike commuting, to running, to design, to bike commuting, to work, to bike commuting, to food preparation and straight to bed to start all over the next day, that everything, and I mean EVERYTHING abruptly stopped. Indefinitely. It was like I the forces of gravity suddenly stopped working for me, and me alone. I knew what to do each day, to get me to the next hour, to complete the day on top of the game and now I didn’t even know what to for the afternoon. It was quite disconcerting.

I made it work though. As best I could, I tried to fill the days by starting new routines with writing, eating, and completing errands, all while I waited out the days to surgery.

I didn’t mind this really, because in the schedule of my future I knew this was still very temporary. This was just a looong break in routine where at some point I would get back to recreating my life, namely through a new job and, of course, running. The importance of those two daily activities can’t be overstated. But what I didn’t expect was this most recent news about the problems during surgery, problems with the cancer and now a timeline that has extended my state of hovering in anti-gravity that much further….so much further that I don’t even have an estimate for it. Previously, I was given a general 6 month timeline to work from, which however fluid this may be, was at least numbers on a calendar I could work from, but now, well, between recovery time and the effectiveness of coming chemo treatments, followed by the potential of this HIPEC surgery again and then recovery again….it’s going to be a long road. And I suspect without a lot of defined routines.

I’m not worried about what I will do with myself, I’ll find ways to make busy whether through more writing, creative projects, blogging, etc., but even just the option find continuous employment will be next to impossible knowing every interview will have to be underscored by my physical, psychological and emotional weakness that will come during chemo treatments, the looming date of surgery and so on. I just don’t even know what options there are for work in this state, outside of really making a push in freelance endeavors (which wouldn’t be the worst thing to be honest).

Looking further out though, I have an even greater concern for routine. Let’s just assume all goes well. I build my strength and start the chemo, which the cancer responds to and the HIPEC surgery is scheduled and performed. I recover well and finally find myself cancer-free and ready to create my life without further interruption. Then what? I’m 36, am looking at missing out on a year of my life, left a stop-gap, low-paying job when the cancer hit and then walk into a world as a 37/38 year old, still needing to manage my finances and secure stable employment. But, and maybe this is my Type A coming out here, I feel like losing the routine for all that time will have me struggling to get back on track, an unemployable adult, and relegated to another job that is unfulfilling and pays insufficiently. I just can’t face that sort of future coming out on the other side of this.

Let me take a deep breath here though. I know this depiction is being pessimistic, because I’m just preparing for one “worst-case scenario” in order to find ways to circumnavigate it, to consider the bad in order to find the good. Because maybe, just maybe, the experience of this whole situation might actually open more doors for me. Maybe the skills and knowledge I get from going through this might aid me directly or indirectly in ways that will alter my previous struggles with finding a solid career path and I’ll actually end up all the better for it. That certainly is an option.

For now, of course, I don’t dwell on considerations that far out. I can’t. I’m more occupied with getting my body to pass gas so I can eat again, pressing my pain button at the appropriate intervals so I don’t have full on pain attacks and just keeping a positive perspective through all this.

Which brings me back to the necessity of routine, even in the immediate.

The Mini-Marathon is coming to town on Saturday. This is THE premier running event for our city, heralded as the country’s largest half-marathon, drawing, I believe 45,000 runners. There is prize money and the winners are often overseas elites who come to sprint down a finishing time of 1:01 – 1:04. For the local elites though, it’s a stage for us, a race to throw down for and have a great showing amongst our friends, families and world-class crowds. It’s just damn exciting. Unfortunately, I have only raced it once, knocked out in other years by injury or hiatus.

It was this time last year that I was still in a self-imposed running hiatus, feeling sorry for myself for not running competitively and instead just trotting out 5 early morning miles on the treadmill before I would head into work every morning. Something started happening about this time though. The weather started getting better, more runners were showing up at they gym and suddenly I wasn’t just running intermittently, but repetitively, 2 week stretches at a time. The fire was building, and the warmer it got, the faster I ran. Then on race day I sat on the steps of the Y just prior to opening, watching the runners stream into the downtown on a beautifully sunny day, some sub-elites doing warm-ups in their racing flats and the nervous excitement just filling the air intoxicatingly.

But the doors opened and I went inside to run. 11 miles. At 6:30 pace. Just for fun.

And suddenly, at some point during that run, the switch had flipped. As I stated in great detail in a blog post soon thereafter, I WAS NOT DONE. The fire turned into an inferno and the only thing I wanted more in the world was to start training again, doing whatever it takes to balance family life and competitive running…so that’s what I did. I set my alarm an hour early every morning, drug my weary butt out of bed and rode downtown to start my workouts in the pitch dark, by myself…whatever it took.

Fast forward to just over a month ago and I was still on a similar routine, getting up early to run then starting the rest of my day, and although I wasn’t in my best shape, coach and I had decided I would run the Mini this year as a gauge of fitness, going into it without much “race readiness” and just to see what happened. I was psyched. I was finally going to experience such a huge local event again and I already started doing the calculations in my head to determine if I could be my previous time on the course.

Then…well…cancer.

And no routine. No long runs, no gym, no speed workouts, no intervals, no hills. No nothing. Just a new focus and the Mini given up on once again….almost.

A part of my recovery process is making sure my legs don’t swell out of control and develop blood clots from lack of circulation post-operation. They told me that going for repeated walks during the day would be a strong factor in getting that blood flowing, not to mention would keep me from getting lulled into the passive comfort of an adjustable bed, letting the rest of my body whither all the same. I wasn’t sure what other physical strength options I had at the time were, but if walking was presented as something that would create effort, than it was good enough for me.

On my first time down the hallway I realized it extended pretty far, took a quick turn and then came all the way back to my original starting point, effectively creating a “lap” for me to work from, as if a hospital had designed a local track instead of a sports group. Good enough for me. After just a few laps I realized how important this was for me, this sense of routine, specifically related to physical effort. Sure, it was just walking, but post-operation walking is not much different than a “preparation pace” run in a normal state. Beyond the physical benefits there was that mental space I needed. Running provides such an open time where the body does it’s thing and the mind can do it’s own, allowing for not just valuable insight and considerations, but that mental space alone. That sense of clarity and simplicity that I have yet to find elsewhere. So even more than just getting out there and doing laps, I was experiencing the mental benefits of running all the same as I did when I was knocking down 6:00 pace instead of 16:00 pace.

Of course, I couldn’t just leave it at that. The mini was coming up and my team is getting psyched to chase down their own PRs, and I didn’t want to be left out of the phone. Without much thought I made the declaration,

“I’m ‘running’ my own hospital mini.”

I’m going to get up on race day, wheel my contraption out into the hallway with me, and when the gun goes off downtown I’m going to start 13.1 laps of the hospital hallways myself, most likely finishing my own distance AFTER my team finishes the real 13.1 miles.

And just like that I have salvaged a piece of my old life routine for my current one. I’m both running (oh, just let me use the term) for the physical and mental rewards of the effort and training, in a way, for a specified goal.

The value of that routine simply can’t be exaggerated. And if I can find a way to hold on to these routines in the hospital, then surely I can find a way to do the same when left to my own devices. Until then, I’ve got time to think on that more, and some training to get back to.

Good luck Team Athletic Annex and all other friends running the Mini Saturday.