May 06, 2004

My Cancer Story

They say later is better than never at all... so now that I have most of my finals out of the way, I figured it would be a good time to tell my story with Cancer and why the Team in Training (TNT) event has been so personal and rewarding for me. If you're up for a longer story and just interested in a little piece of my life, please continue on reading. I'd love to hear your comments as well.

My ordeal with non-Hodgkins Lymphoma begins back in Janaury of 1999, when I was just a junior in High School...

(reader beware: the following content does get a bit graphic)

I attended Plattsmouth High School in Plattsmouth, NE as a student of the class of 2000. I particpated in cross country (XC) and soccer in high school and lettered (varsity ranked) all four years, but nontraditionally in my junior and senior years. There's a good reason for that though, as on January 25, 1999 I was diagnosed with non-Hodgkins Lymphoma (a blood-related cancer of the lymph nodes), and so began an ordeal that would change my life forever.

Indicators Leading Up
Just to jump back about a week or so before this time, I think it's important to mention that I started having severe flashes of pain in my right leg. The pain felt like "fire running through my veins" up and down my right leg. and would perhaps last for 5-10 seconds, and then disappear again. This lasted for about two weeks before I realized what was causing it.

Then on around Thursday January 21st, I started being unable to hold down the food I was eating. I would try eating smaller and smaller amounts of food without vomiting, but that didn't help. No matter what small amount of food I tried to eat, in just a few hours later it would be coming back up. I thought I was just somehow sick and began sleeping more during the day, almost going into a kind of "hibernation" mode to conserve energy. With no improvement seen over the weekend, we visited my family doctor first thing Monday morning, on January 25th.

I had seen the same doctor just a few days earlier about the pain in my leg, but we had not found a cure for that, even though we did remove a suspecious cyst from my calf. Now that I was having trouble eating though and had some side/abdominal pains as well, an X-ray of the abdomen was recommended. The X-ray showed a large mass (about the size of a grapefruit) in my lower right abdomen/pelvic region. The doctor called this a "tumor" and we were on our way to Midlands hospital to get it looked at further. I thought to myself, "Ok - it's a tumor, thats good - it's no big deal. People must get tumors all the time and it shouldn't be a problem to just remove it so that I can get back eating, school and enjoying everything else."

It would turn out that this tumor was also the reason behind the "fire in my veins" pain. The tumor was pinching on my sciatic nerve running down my right leg, so as these nerves were dying out and the electrical signals firing, I could feel it.

Investigation of the "Tumor"
One thing they could tell right away, was that this tumor was "engulfing" my small intestines and preventing me from passing food through. This unique condition made me a prime candiate for another unique experience - enemas. These were conducted with the aid of another X-ray machine and a contrast fluid to see just where the blockage was. I had X-rays taken probably almost every day for my first couple weeks in the hospital. I remember thinking that, "I must be pretty radioactive by now."

So one of the next things they wanted to do of course was "learn more" about this tumor, and that would involve taking a biopsy. I went under a short surgery (it was just a nap for me) as doctors opened me up to grab a piece of the tumor to be sent off to some medical labs for identification and processing purposes. Since it would take several days to get results back from the lab, I just waited it out there in the hospital for a few days and hoped for signs of improvement. I had a couple good friends from high school come visit me in this time and really appreciated that, even though I was sleeping quite a lot and not feeling so well, and actually told people 'not' to come see me. I didn't want my friends to see quite the sad shape I had become in, and didn't want them to think of me as such a sick, weak, and tired person in pain. During this time, I was being fed lipids and vitamins via an IV and was able to walk around the hall a little bit with all my IV bags. (I think I was a little proud of this fact, not of walking around, but by showing off how many more IV bags I was on than everyone else.)

The unique thing was that they were never able to fully classify my tumor into the exact kind of cancer it was (based upon the cells), but it was definately malignant (cancerous) and non-Hodgkin's Lymphoma.

The Decision
When the word finally came back that this tumor was not just "a tumor" - but cancer - I think my family and I were all pretty shocked. It was something I had never even considered before, and in my prior perfect health (I didn't smoke/drink, ate healthy, ran XC and played soccer, wore sunscreen) I couldn't figure out immediately "how/why could this happen to me?" This wasn't the most disturbing fact at the moment though. I hadn't eaten anything (besides ice) for nearly 2 weeks now, and my oncology doctor wanted to perform an ileostomy (colostomy is for large intestines, illeostomy for small intestines) which would reroute my small intestine out of my abdomen so that I might start passing food again. This idea sounded even worse than the cancer for me at the moment! I didn't want to be a "freak" and carry my feces in a bag around my waist. I remember crying about it, and pleading that "we don't need to do that" and maybe perhaps with some initial chemotherapy the tumor might release its hold on my bowels and I could pass food normallly again without this operation? That wasn't likely though, and even more risky. Luckily I had the support and sanity of my parents to convince me that this was the best option to pursue and hopefully I could start eating again right afterwards!

The act of eating - chewing and tasting something in my mouth, swallowing and feeling the satisfaction - was something I had missed greatly over 2 weeks. Sitting in a hospital bed and watching TV (since there is not much else one can do) I realized just how many commercials there are for "food" in our society. I took a list of everything I saw on TV that I wanted to eat afterwards -- as soon as I got out of this operation. I actually wouldn't begin eating solid foods for a couple more weeks after the surgery though - I think they left this detail out when I was deciding to have the ileostomy surgery.

SPAM was even on my "to eat" list, because I had never even tried it before, and everything just looked so good when I was sick! (I later recovered sanity though, and still have not tried SPAM yet - for better or worse.)

My family and I prayed for strength, hope, a succesful operation and full recovery just before the surgery, and this helped a lot. It helped me accept the things that had to be done, and release my worries to God and place my faith in Him, who wouldn't give us anything in life we could not handle. "Oh Lord, give me the courage to change the things I can, the strength to accept what I cannot change, and the wisdom to know the difference."

After Surgery
With the ileostomy in place, I was transported that very night after surgery from Midlands to Bergan Mercy Hostpital in Omaha. I remember the ambulance ride and being very talkative. We finally got to my new room and I slept well for the night, I had gotten through the operation successfully, and would have to figure out what all happened the next morning.

My Name... is Neo
I woke up without any pain at all, and it took me a moment to comprehend what had all happened and where I was. Though I hadn't seen the movie The Matrix yet, waking up in this hospital bed I felt perhaps much the same way Neo did after he awoke in the machine world after taking the red pill. (The original movie had a deep impact on me when I first saw it - because I was the hacker-type, and also becuase I happened to identify and understand it so well from my own life experiences.) I had been cut up through my abs and had a huge bandage there to cover the developing scar, I had an ileostomy bag with the stub of my small intestine (stoma) sticking out of my abdomen, I had a nasogastric (NG) tube running through my nose, down my thoat and into my stomach to drain fluids (which I feared of choking on in the middle of the night), as well as a port and a groshong on my left shoulder and chest respectively that serve as semi-permanent IV tubes. (I often refered later to friends and strangers alike that my "port" was actually an alien implant. It sure looked like one.) Later on, when it was time to remove the port, I almost didn't want to. It was a part of who I had been for the past 2 years, and my doctor said that the body literally had "engulfed" the object as part of itself, so it took a little digging to get it out.

Just like Neo, I woke up in a body and world I did not recognize as my own, but I would soon learn to accept this harsh reality as it became a part of who I was, and who I was to become.

Best Compliment of My Life
I discovered pain whenever I tried to move my body around -- any motion that would involve the use of my abs. The surgeon had cut from my belly button down for about 4.5" right through the middle of my abs. I had been running cross country (XC) in high school just months before and had some pretty tight abs. This is where I received perhaps my most favorite compliment of my life: The surgeon said, 'I am so used to performing this operation on much older people, with more fat and less muscle than you. When I tried to cut through your abs, I had to get both hands on the scissors just to do it!' This only made me laugh, which gave me great pain in my abs of course. It was overall a good feeling though, and I appreciated the compliment.

The Pain and Joy of Laughter
I honestly begged people around me not to make me laugh, because it hurt so darn much. If you hang around with someone who is a real jokester, and makes you laugh constantly -- you may beg them to stop, because your gut is just getting sore from laughing so much. Try thinking about this, with your abs just being cut open 24 hours or days before as the muscle fibers are trying to heal and reattach... and then "laughing your guts out" has a whole new meaning. I remember the Jost family even brought over the movie Something About Mary later to watch, and it was a great feeling to watch a movie and escape mentally from being sick and stuck in a hospital, but though watching it was physically painful from the laughter, the inner joy it brought was much needed.

Deep down there was another pain being relieved by the laughter, an inner burden in my spirit that felt uplifted with: every friend I saw come visit me, every smile I received from nurses, doctors, family and friends, every get-well card I received (so many my Dad filled the hospital room walls with them) or flowers even, and every laugh someone would bring to my heart.

I feel the body can endure extreme amounts of physical pain, much more than most people will ever have to experience -- but to suffer pains of the heart and spirit, to loose hope, I feel these pains (that often no one else can see) can be the most damaging. We as humans are so much more than just flesh and blood, we need more in life than just bread and water to survive, we need hope, we need love... and I would pray that this need, more than any others, are met by those in great suffering, especially in suffering from diseases like cancer. To take a quote from the movie The Shawshank Redemption, "Hope is a good thing, maybe the best of things. And no good thing ever dies." I give great thanks to the goodness of humanity for helping me to heal and recover in my time of need, and encourage everyone to be kind to one another and smilie. There's so many great insights to life one can realize when going through an ordeal such as I have, and I'll probably have to dedicate a section of stories just to cover them all - lest I forget, and the strength of their meanings tends to fade with time. One more quote I often encourage others to consider is by Mother Theresa, "Kind words can be short and easy to speak, but their echoes are truly endless."

What Doesn't Kill You, Makes You Stronger
There's of course some truth in this, or else people wouldn't say it. Going through some of the constant pain I endured while on the chemotherapy, while already having a fairly high threshold for pain I would say, only made me feel that if I can go through this -- I can go through anything! Lance Armstrong at this time was winning his first Tour de France, and was a big inspiration. He of course had testicular cancer that even spread to his brain, and now he has won several consecutive Tour de France races as a cancer survivor. I felt I would be able to do the same. I could train harder now after knowing what the pain of chemotherapy is like, I could push myself harder than ever before -- if only I could run. I couldn't even keep my balance on my right foot alone, and what had once been a pair of well-defined calves from running cross country -- now was only one, with a flesh-and-bone counterpart that looked sadly out of place. After loosing some touch with, understanding, and appreciating my threshold for pain and perseverance -- I now think I could train hard, but the mental road-block has returned in just how hard I want to "push" myself. I admire and respect those who push and define their own limits, those are true champions and leaders, no matter what subject of interest.

Road to Recovery - Summary
I would spend a full month in the hospital, and go through approximately 3 months of chemotherapy with the drug methotrexate, and got my ileostomy reversed after 6 months. For my sophomre year of high school, I had received an award for perfect attendance, while in my junior year I would miss over 50 days of school. My teachers were very flexible and understanding of my situation of course, with the chemotherapy taking 3 week intervals (1 week of health, 1 week treatment, 1 week of recovery). I still missed a lot of school, but was able to complete all my major core assignments for each of my classes. I even tried to keep up with my Spanish 3 class by reading all the medical pamplets en espanol on my floor in the hospital. I created my Pi Day (March 13th, 1999) video presentation for my Pre-Calc class as a parody of the recent movie Pi with a twist on the Y2-Pi bug in computers (instead of Y2K), and included scenes in my video from the hospital with my nurse Jolene, my mother, and myself.

I also missed out on visiting my little-PAL, a kindergarten student I was mentoring at the time, because of my hospital stays. I was a little heart broken in not being able to join the trip to the zoo with the PAL program, but it was a for the best, because my white blood counts were so low I would have likely been in serious condition if I even contacted someone with a cold.

The Hair Story
My hair of course all fell out from the chemotherapy - all over my body. I felt like I was 10 years old again at times. =) The chemo attacks all fast growing cells, just like cancer, but in effect also takes your hair. In all honesty though, I looked pretty sharp being bald, and got a few compliments like, "at least you know you'll look good if you go bald when you get older". My brother and father both shaved their own heads in a sign of family support for me being bald. This reminded me of a olympic U.S. volleyball team that did the same when one of their teamates was bald recovering from chemotherapy as well. I was able to attend a few soccer games as manager though, and when it started to rain... boy is that rain cold on a bald head!

What was incredibly awesome though, was how my hair grew back! Now, I had heard stories of people's hair coming back in different colors and textures even, but it was amazing how my "new" hair was just soft as - if not softer than - a new born baby's hair! It was also very blond and a bit curly, though unfortunately I don't have any pictures available to prove this. =( It was really really soft and thin, and I got a few ladies who liked to touch it, and prefered it to the baldness of course. (See: theres a positive side to everything!)

My Nike Running Hat
My XC coach Todd Nott also brought a heart warming gift of a get-well poster signed by members of our XC team, as well as a black "Nike Running" hat to me while I was in the hospital. The hat definately kept my head warm, but at first I wasn't quite as impressed. I knew my coach ment well and I appreciated the gesture; but I didn't want to "hide" my baldness, already had plenty of hats, and really didn't know if I would ever even be able to run again. This all changed of course. This hat now has become VERY sentimental to me, and I wear it all the time now (though it is showing its wear). I was also very glad to finally show it off to coach Nott as I ran into him just before THIS race on May 2, 2004 - my first 1/2 marathon, while he was off to run the full.

Five years earlier I would have never even imagined running a 1/2 marathon - I would have just hoped to be able to "run" again. This reunion though, of coach and runner, was something I'd been waiting for, and I felt glad to finally show him how much I cared: for the support, for the hat, and for teaching me "how to run" -- a life-long hobby I'll always embrace.

Why I Run
One thing about running has stayed with me, and it was something coach Nott said to us once while we (the team) were running speed workouts in the park - and all of us were running our hearts out to near exhaustion over several hills. He said that we should, 'run as fast as well can. run for those who cannot run. save nothing, give it your all'. Now, at that moment when I first heard this (before my cancer), as my body is ready to just roll over and collapse from running so hard and I don't think I can go on... the words didn't mean much to me. I figured that those in wheel chairs or anyone else who cannot run must surely have at least gotten used to it, and what benefit would they get out of seeing me run? Well, now that I've been on the other side of that line - being able to and unable to run at times - I see the meaning now. As the Shriners motto goes, "Strong legs run so that weak legs may walk", and long distance champion Steve Prefontaine said, "To give anything less than your best is to sacrifice the Gift." I would feel the same way, about anyone who has the ability to run, and doesn't use that gift to glorify God with their abilities, or doesn't make use of the gift when so many others could only wish to walk, let alone run. Don't waste your gifts, use them, and use them for the benefit of others. As you can well imagine, having this renewed ability to run again... after being without it for only a couple years, leaves me both very humble and thankful.

Thanks for reading along some pieces in the life of my "cancer story". There are many more little stories and details I would like to share, and perhaps will online, but feel free to ask me yourself and I'd be glad to talk about it... as well as listen to any stories and comments you might wish to share.
- Brian

Posted by bwiese at May 6, 2004 04:05 AM

First of all, gramatically and stylistically, that was beautifully written. I unfortunately had to stop during reading at one point and attend to someone, but I returned and started from the beginning. I was watching Gattica last night and at the end Vincent and his brother are doing their courage test. They're swimming as far into the ocean as they can and his brother asks him how he's beating him so badly. Vincent replies "I never saved any for the way back." This reminds me alot of what your coach said. Also, ironically, I watched Pi for the first time last night. :) I know, I'm totally like ten years late watching that.

What really bothers me about your story is that I never knew any of this about you. Granted, I don't really get to talk to you all that much, but it's a piece of information that sheds a little bit of light onto the knowledge bank of what I know about you. It enables me to see the way you see things, to understand why you think the way you do and why you do the things you do. Your optimism is truly encouraging. I find alot of pessimism in myself and often think degrading things like "I can't do this... I'm not smart enough," etc. I always hear people say things like "You can do whatever you want if you just put your mind to it." While I always find this hard to believe, I know that when they say it with such ferver, there must be some shred of truth in it. Thank you for writing that and sharing it with me. I hope I'm not the only person somewhere out there in the ether that took something from it. Though, I doubt I am.

Posted by: Shyama at May 9, 2004 01:36 PM

Thanks for the note Shyama, and for taking the time to read this and learn more about me. =) I'm really glad you got to see Gattaca as well, and the quote you mentioned - is one of my favorites of all time! The movie Gattaca touched me greatly (just like the Matrix) and it's other popular quote, "There is no gene for the human spirit" probably deserves mention here in this story as well.

Posted by: Brian at May 10, 2004 04:17 PM

Hey brian,
Haven't heard from you in awhile. You seem to be doing well. I still remember all those days of running and congrats on the 1/2 marathon.
You XC friend

Posted by: Greg Lemley at July 8, 2004 10:07 PM

Hi Brian,

Congratulations to your accomplishment on completing your first 1/2 marathon. You are an inspiration to me, and for all others who might be reading this. Thank you for sharing!

Fellow LMCO employee,

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