11 baby steps to first milestone

Tonight was the 11th treatment of 33, a third of the way to the finish line. So far I've had a few headaches, a couple seizures, and minimal sleep; yet, I couldn't be more excited about how things are going. On Tuesday I met a new Neurologist who seems pretty awesome, and I got a new tendon stretching splint made that is much more comfortable (the first one bruised my hand). The Neurologist prescribed me Lunesta, which will help with the sleep issues (and hopefully the seizures)... so after all of this maybe I'll work my way into a commercial (they'll just have to voice over my hickish accent).

Tomorrow I start the second third of treatment, then celebrate the beginning of 2011, then back to the brain (tumor) blasting next Monday. It's a long road but it feels like I'm in the high speed lane.

Everything is going as planned and I'm still standing by the fortune cookie. :)

Update via poetry

Happy December 26^th and hope you all had a wonderful 25^th!

Today I thought I’d share a poem I scribbled together last night about how I might describe fighting cancer, or any other illness for that matter really (sorry in advance if you have to use a dictionary… I like to flaunt weird vocab. on occasion)… so here it is:

Survival

Mind enshrined in a cocoon, blindness.

Contortions strengthen will.

Body cannot escape its weakness,

Imperfections in life fulfill.

Goals exceed foresight,

The blinded mind must unwind.

For there is monumental might

That open eyes can find.

Equilibrium insists on entropy,

Turbulence, turmoil… tenacity,

Harsh, enduring hostility.

Perceive the plan.

Proceed to pugnacity.

Persistence… Perseverance…

So, thinking about what I go through each day reminds me to accept that I must embrace my illness in order to defeat it. It’s a constant battle within my body, balancing chemicals, emotions (neurotransmitters and what not if you’re feeling nerdy), and to endure these constant changes requires that I learn my body very well, and react accordingly when things start to get out of whack. As an example of this knowledge I’ve gained, on Thursday I explained to my nurse that, although normally my “chemo” should cause hypertensive symptoms, I’ve learned that I experience quite the opposite. My blood pressure before receiving treatment was somewhere around 155/100, which caused the docs to consider holding off treatment until it dropped to a “safer” reading. But what I’ve found out for me is that my blood pressure continually drops to a rather healthy sounding 110/65 (ish) during treatment… my nurse was quite surprised about how well I knew my body, as of course my blood pressure reacted accordingly. But I think taking these extra steps and being proactive about my care by sharing what I know to be consistent about my body with the medical staff helps them to better care for me, and moreover helps me to accept when things in my life are out of my control. The point is, in my experience, survival is about being persistent in the fight, and using every resource available (including my eyes, in reference to the poem, and my other senses) to make it easier on those that are helping me. As a side note because I know some of my caretakers read this, thanks for putting up with me and my constant attempts to be a know-it-all… Fortunately, I’m generally told when I’m wrong anyway (not that it occurs very often… *wink*).

Hope you enjoyed this and here’s to another fun week in Bloomington for me and to a great week for you wherever you are!

Another day... another update

Merry Christmas Eve Everybody!

Unsurprisingly, I have quite a monstrous headache today... 8 total radiation treatments down (25 to go!), plus chemo (well technically it's a monoclonal antibody - not "true" chemo) will do that. That, and I just ate some Skyline chili because I am stupid... my stomach doesn't feel too great now either (on the bright side it was delicious). But that's enough whining for now... my poor dog is drowning me in a pool of sympathy, he's so awesome.

I didn't sleep much last week because (the docs think) of being on steroids, which is a bit of a catch 22 because the steroids help with brain swelling, and consequently reduces headache pain, so I've reduced the steroid intake a bit, which is good if it still does the intended job. I suspect the hotel beds aren't helping the sleep situation too much, but it's actually a very nice place... I just don't sleep well when not at home... pretty boring story huh? I think I'm putting myself to sleep now, so maybe I'll just write this kinda stuff at the hotel.

Back to Christmas (I'm scatterbrained, perhaps literally?)... My family celebrated Christmas on Thanksgiving (we called it Thanksmas) because my brother and sis-in-law would not be in town, plus we weren't sure if I would be either due to either white death (snow) or simply not feeling well. I wore my "All I Want for Christmas is a Cure for Cancer - and maybe a couple presents under the tree" shirt to the hospital yesterday, and of course it was a big hit (I've become known at pretty much any doctor's office I visit as "the t-shirt guy"). The meaning of Christmas has changed significantly over the years, something I think and hope we all experience... It's not about the wrapped up stuff so much as what we've had all along: family. Our Thanksmas was incredible because my family was together, and we all got thoughtful gag gifts for each other instead of the usual "what do you want" type Christmas... I don't think I could laugh much harder about some of the items I received (thankfully, my family appreciates that I have a sick, twisted sense of humor)... I won't be telling you what I received. But again the gifts themselves weren't important, but the thought put into them made them priceless.

So, tomorrow won't be much different than any other day for our family... we will wake up thankful that we've woken up, we'll probably watch a movie or two and play a couple games, have a nice dinner and then make fun of each other (sounds pretty normal right?). I love how every day is like Christmas for me, because every day is another opportunity to keep living... even if some days are spent in pain or aren't as exciting as others, every day I'm alive is cherished and treated like a gift.

I hope you all have a wonderful Christmas and spend some time thinking about the meanings of the gifts you receive, regardless of what they are.

I'm 27 and I Have a Bucket List!?

After about an hour delay, I walked into the room to begin my fifth treatment of 33. But during the delay, I had a conversation with one of the radiation techs and another with a fellow patient who is fighting prostate cancer. As a somewhat amusing aside, proton therapy is probably the best radiation available for prostate cancer, so I’ve seen many men walking about gripping the back of their gowns as they apparently have to endure a rectal probing throughout treatment; meanwhile I get to wear whatever I want (I guess brain cancer may have a higher fatality rate, be more difficult to treat, and so on, but at least receiving treatment sounds much more bearable from a probing perspective).

Anyhow, back to the conversations… First I spoke with the tech, a guy a few years younger than me, who told me that I was both an inspiration and a revelation (as he could just as easily be in my shoes). He told me that he loved his job because of the awe-inspiring positive attitudes that radiate (pardon the pun) from the patients who seem to do the best during and after treatment, and I most definitely presented one of those positive attitudes. Then, as I continued to wait, I had a long discussion with my new found friend, a 61 year old man fighting prostate cancer. We again discussed the importance of boasting positivity and maintaining a sense of humor throughout the (necessary) humiliation that our cancerous bodies must endure (this is where I learned about the probing, which seems to go well with the star trek-esque radiation beam). We have to reveal potentially embarrassing information to strangers (granted, most often they are medical professionals, but it can still be awkward), but again, we (cliché alert!) make light of the situation, perhaps because we wish to hold face, but more so because we have a different perspective on life (for example, how often do you see a commercial about creating a “bucket list” as opposed to preparing for retirement?). The thought of already listing out things I’d like to do before I die is as much stressful and mind-numbing as it is exhilarating and freeing. I know that I have an excellent chance to beat this disease, but more importantly, I’ve figured out the things that I cherish the most: family and friends (they are essentially the same in my book), helping others, and not worrying about money and other petty crap. That essentially comprises the key elements of my “list,” though there are a few other lower-priority items.

What I’ve learned the most from this situation is that the most valuable things in my life aren’t material… well I guess in a chemical/biological composition sense they are, but you get the point. People, and my interactions with them, are my most valued “possessions.” I have my blood relatives, close friends, and even many friends I’ve met online, who are always supporting me and reaching out to me; I have a family in Pittsburgh who has gone well above and beyond anything I would expect from them as they attempt to simultaneously earn a Master’s Degree, or teach classes to said students, but they’ve found opportunities to send me care packages on multiple occasions, including funny notes, music, cookies, hats and a plethora of other things, and some even drove several hours to my home to visit me and join me in "the walk ahead for a brain tumor cure"; and of course, what would I do without the most amazing group of medical personnel, who each have embraced (and often matched) my high-maintenance personality, as well as gotten me this far.

I guess my bucket list isn’t so much a “to-do” list as a “to-appreciate” list.

Like a Walk in the Park

Week one of radiation was kind of like a walk in the park when it's raining. There were definitely things I didn't like about it (the headaches, the struggle to strengthen my arm and hand), but at the same time I love what I'm doing. These daily struggles (fighting cancer cells, working my butt off to get better) help me to think about the good things in life, and sometimes it's true that the bad comes with the good. I love to go for walks, but not when it's raining, but I love the smell and feel of rain. So, I weighed the odds of walking in the park through the rain, or staying home, and discovered that getting wet isn't so bad when walking will ultimately make me feel better.

It didn't take me much time to come to terms with what I had to do, and what I'm speaking of is radiation treatment and chemotherapy of course. So, I put on my coat, broke out an umbrella (even though I don't like the awkwardness of carrying one), and stepped out into the rain. When life confronts me with choices, I prefer to make the aggressive choice. I know some people who prefer to stay as far away from the rain as possible, but I think they're missing out on the beauty of a nice brisk walk, a chance to take life head on (excuse the appropriate, yet awful pun, in my case).

Anyway, that was just an analogical musing which hopefully helped to describe why I'm putting myself through this crap. On a more literal note, here's mostly how I spent the past week: getting radiation (not too fun, but interesting), doing occupational therapy activities (fun, yet frustrating), chillin' with my brother (thanks by the way... I know I already said that, but I enjoyed your company), writing and drawing (fun and therapeutic), and sleeping (sort of... hotel beds aren't my favorite). I met with the radiation oncologist yesterday and explained that I was having pretty bad headaches, so he put me on Decadron (a steroid) to help alleviate some pressure in my brain. Unfortunately, as most people know, a side-effect of steroids is hunger, which I'm apparently quite sensitive to since I had two full dinners last night. I also met with a new (and by new I not only mean new to me, but also fresh out of school - as in graduated a couple weeks ago) Occupational Therapist who will be working with me to refine my daily activities to hopefully give my muscles and brain the best chance at recovery. So, hopefully she will let me help her out a bit based me literally having more experience in neuro rehab than she. Other than that, the week was relatively uneventful, like a walk in the park.

Wishing you all the best!

-TheCancerousOT

Tonight's Fortune Cookie Says I'm Good to Go

Apparently people don't appreciate the humor I find in this, but tonight I ate at a Chinese restaurant with my brother and a friend, and after the meal we received the standard fortune cookies, and mine said "Good health will be yours for a long time." So, thankfully these fortunes are always right. You can stop worrying... not that you should be in the first place.

Just a short update today...

Hey all,

Second treatment went very well today... no post-radiation headache, which is awesome. Joe and I went driving around Bloomington for a bit afterward... it's a pretty cool area. We hit up a restaurant called Bub's, which apparently the guy from Man vs. Food ate at once on his show. They have a 1 lb. burger (after cooking it), which one can get in either beef or elk meat (I never had elk until today... it was quite delicious). I did not eat the 1 lb. burger by the way. Anyhow, I've been slacking on my therapy today... So, I better get workin'. For those of you that I know/that know me, miss you all... and if you've stumbled on this page somehow, hello and goodbye. :)

Couple links if you're interested in better versions of the pictures at the right of your screen and my youtube channel (both need some editing though):

http://picasaweb.google.com/matt.korfhagen

http://www.youtube.com/user/thecancerousot

"See" ya soon!

-TheCancerousOT

Second Round of Radiation - Bring it on!

When I learned about proton beam therapy, I knew it was the best treatment I could choose. A 90 ton machine that fills a three story tall room, perfectly balanced so that a person could move it with a finger... how has technology come this far? I traveled three hours from Cincinnati to come here (most people come from much further away), and I met a doctor that told me there was a 20% chance that he could "cure" my cancer. Though this term sounds misleading (as we all know there technically is no cure), I knew his passion and his complete commitment to provide the best treatment available were enough to convince me that this will work.

So, today when I walked into the treatment room knowing that for the first time the radiation was going to hit my brain, I felt comfortable. Some people are surprised by my "strength" and inspired by my attitude, but I always say "what choice do I have?" I want people to know that this disease is not a death sentence. It's an opportunity to show people that true strength comes from within, and that there is always hope and a reason to keep going. My life might literally be shortened by this disease, but what I leave behind in what I teach people about attitude and perseverance will live forever. I don't know yet if I'll fall into that 20% category that this treatment will completely kill the cancer, but I don't need to know nor do I worry about it. At some point we all eventually die, but our actions live forever.

I hope that I'm not just doing this in search of a cure. Yes, it would be nice if it works and I continue to live a much longer life than previously expected, but I hope that people will treat this as a learning experience. I hope that everyone touched by my life will get something from me.

My favorite quote: "attitude is everything, so pick a good one!" Please think about this when you start to worry about little things like cancer.

My Story - The Short Version

Five years ago I woke up surrounded by medical personnel asking me to answer simple questions: What is your name? What is the date? I couldn't do it. I'd had a grand mal seizure that morning which terrified the color out of my parents' skin (not that there was much there to begin with). Later that day I found myself being prepped for brain surgery for the following morning, but my uncle, who is a physician, asked me to seek a second opinion before going through with surgery. After the ordeal I've gone through, I am thankful for having had him there to help guide me.

The mass (or the blob as I like to call it) rests on my motor strip, and surgery to remove the blob completely would have left me paralyzed. Instead, I went through radiation and chemotherapy. In 2007 the fun began with more seizures, and I started to fail through the list of anti-epileptic medications available. In 2009 I had seizure surgery to remove the seizure focus, but again unfortunately this procedure was unsuccessful, as eventually the seizures returned. The surgery also put the left half of my body in a weakened state (essentially paralyzed on day one), forcing me to relearn how to use my body during endless days of Physical and Occupational Therapy.


This year, 2010, I've begun a new battle. In May, just before I started to feel like I could get my life back together, I was informed that I'd have to receive another round of chemotherapy because the blob was showing signs of growth. I was two weeks from starting to earn my Master's in Occupational Therapy at the University of Pittsburgh, and I decided to travel back and forth between Pitt and my home in Cincinnati every two weeks to receive treatment. I would advise against attempting this, as earning a Master's degree and fighting cancer are individually brutal, let alone doing both at the same time. Just before the Summer term ended, I succumbed to my hostile body as it pummeled me with seizures, and the chemo wasn't doing me much good either. I have every intention of returning.

Now, I am in Bloomington, Indiana, two days from beginning proton-beam radiation therapy, which is the most potent radiation available, and also provides the smallest amount of risk of side-effects. I will receive 33 treatments over the next 7ish weeks, with the goal of total death of the tumor. I have returned to Occupational Therapy as a (much more informed and educated) patient, and continue to work every day to gain strength in my left arm in preparation for the potential damage this radiation could cause (plus it's fun anyway). I will continue to migrate between here and Cincinnati to receive chemo in Cincy and radiation here until the radiation is finished. Oh, and at the beginning of the fourth week of radiation, a second chemotherapy is going to be added... woohoo!

This tumor has been the hardest thing for my family to deal with, but it has also been a blessing for me. I found a passion for Occupational Therapy during my time as a patient after the seizure surgery, and I am now working toward my Masters in Occupational Therapy at the University of Pittsburgh, which is one of the best programs in the nation. But more importantly, I appreciate and respect life, I find beauty in simple things, and I am surrounded by amazing people.

Whew! That's the short version!