Excerpt from 90 Minutes in Heaven, by Don Piper, a must read in my opinion

"Despite my own perceptions, friends and church members say they received encouragement by watching me as I progressed from a totally helpless state and gradually moved toward a fairly normal lifestyle. A number of individuals have said to me in the midst of their own difficult times "If you could go through all you endured, I can go through this."
"I'm glad they've been heartened by my example, but I've had a great deal of difficulty accepting myself as a source of inspiration and courage. I don't know how to cope with their admiration and praise, because I didn't do anything. I wanted to die. How uplifting can that be?
"When people tell me how inspiring I've been, I don't argue with them, of course, but I remember only too well the time David Gentiles told me that he and others would pray me back to health. I lived because others wouldn't let me die. Those praying friends are the ones who deserve the admiration.
"Most of the time when people have that if-you-can-do-it attitude, I nod, acknowledge what they're saying, and add, "I'm just doing the best I can." And really that's all I did during the worst days. Sometimes "the best I can" was nothing but to endure."

I can relate to Mr. Piper through most of this excerpt and more or less throughout a good majority of this book (though I haven't yet finished it, I found this section to be particularly accurate. I'm just doing what I have to. I'm not quite sure what makes me an inspiration. I suppose it may be that I handle it quietly and with humility (I'm not sure that's really the word I'm looking for...). However, I simply am thankful for all the prayers and support and for the amazing medical staff that God has sent to me, no matter what the end result may be. I suppose I've accepted that at some point I will no doubt die, but I will continue to do everything I'm doing and to accept the help from others until the time that I'm no longer needed. For me, the inspiration is you all and by no means myself. But no doubt that is a matter of perspective from where I'm sitting vs. where you are. All I can suggest is to do what you have to, accept that we all have our "burdens", our "crosses to carry", and to endure and be thankful for what we've been given. And I am absolutely thankful for all of you, my inspirations.

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Update from Doc Post-MRI

On Wednesday, there was a conference held by a group of Physicians to discuss my case (among other patients' cases as well I'd assume... I'm not that self-centered as much as I try to be). With his permission, and for lack of a better way to explain the results (though I will try to elaborate), I am posting the email I received from my Oncologist last night:

Hi Matt,

I have pasted in results below, and some representative pics.
Basically, the main area of concern (oval area of new enhancement) appears stable. There are two new areas of linear enhancement without obvious tissue destruction. This may represent just a change in the blood brain barrier rather than significant tissue injury. Pictures 1 and 2 are two ways of looking at same thing. This would qualify as a radiation effect rather than significant radiation damage. nobody at today's conference felt there was any evidence of tumor progression. The FLAIR signal abnormality [generally the white stuff you see in the pictures] that had defined the tumor looks very stable.

So, bottom line, no further injury to brain, and hopefully combination of Trental + steroids + HBO + time is preventing further damage. There was no significant edema, and may be reasonable to talk about slowly dialing down steroids.

........................

Basically, this is neutral news at worst and fantastic news at best. The "area of concern" has not made any significant changes and I am improving symptomatically for the most part, which are both excellent. As I continue to do my daily OT exercises and morning trots with my mom and/or Gambit (my dog if you didn't know his name), everything strength-wise is getting better and I am gaining more coordination. Overall, I'm doing very well as expected physically. It's still a bit of a mental struggle as I'm trying to diet a bit to fight the steroid weight gain (everything tastes amazing unfortunately and my appetite is, to say the least, relentless), and it's obviously a battle of patience as well. I'm working on getting some new pictures up so that you can get a look at the HBO chamber, among a couple others. Life is treating me well. Again, I want to extend a warm congratulations to a few of my good friends and their families for recent excellent news of beating their cancers (couple prostate surgeries and breast cancer with no surgery). I will be visiting my Radiation Oncologist and Neurologist in about a week, so perhaps I will receive more news then. 34 HBO treatments down! Go me!

I know I recently removed a bunch of people from my facebook account, which consequently resulted in their loss to access when I post an update (I know for certain there were a few of you... again I had to do that for personal reasons). Please (anybody who has read this and/or stumbled upon it), send your email address to thecancerousot@gmail.com and I'll be sure to get you on my mailing list for when I send out updates! This is also the email address to send any relevant questions, which I will then share with the blog.

Again, keep in mind that the second annual Walk Ahead for a Brain Tumor Cure will be on Oct. 2. It is a 5k which you can walk/run/wheelchair and promises to be an enjoyable experience. I plan to make Matt's Matter Matters T-shirts again this year, so let me know if you are interested in having one... I'll assume anyone who joins my team once I can get it set up (they aren't ready for me yet) wants a shirt (I'll need sizes of course).

If you wish to make an early donation to the team, checks can be mailed to the following:

The Brain Tumor Cancer Fund in honor of Matt Korfhagen at Walk Ahead BTC Fund
c/o UC Neuroscience Institute
P.O. Box 670570
Cincinnati, OH 45267-0570

(reference Matt's Matter Matters in the memo line of your check)

OR

If you'd like once I've got my team set up you may donate then.

Also, I am very grateful for my Uncle and his future wife (my future aunt of course) for requesting that donations be sent to this cause in lieu of receiving wedding gifts, as well as to raise funds for Alzheimer's (there is a 5k for that on Oct. 1 if you prefer, or would be so kind as to donate to both causes. The Alzheimer's instructions are below:

The Alzheimer's Association in honor of Ruth Lehrter at http://www.alz.org/cincinnati

OR

The Alzheimer's Association
Greater Cincinnati Chapter
644 Linn Street, Suite 1026
Cincinnati, OH 45203

Any donations to either of those causes would be very graciously appreciated and I am so thankful for all the support you have all provided to my family and myself. You are amazing.

Quick Checklist-Style Update and a Cool Poem

Hey all... I'm extremely exhausted, but I figured I'd throw something together before bed... Thanks for all your patience as these updates have become less frequent (and this one significantly less detailed. As you know, I must be patient with the healing process, and therefore I require you to be patient with me. However, here's the short version of what's going on, followed by a poem I scrawled together back in high school while on a trip to the Monastery at Gethsemane in Kentucky. It got published in a book called "In All Things - Everyday Prayers of Jesuit High School Students", edited by my former Religion teachers Michael J. Daley and Lee P. Yeazell. Anyway, here's the checklist:

1. Hyperbaric (HBO) treatments are still going (treatment 23 of 60, possibly as many as 90, is tomorrow). I will find out how effective HBO has been after an MRI on the 28th of June. It basically involves me lying in a glass tube sucking in ridiculous amounts of Oxygen while I watch a movie or listen to music. I don't really feel anything besides occasionally bored.

2. I recentlky was diagnosed with mild sleep apnea so now I look like a fireman (thanks, mom) when I'm sleeping because I have to use a CPAP (continuous positive airway pressure) machine to help keep my airway open while I sleep... yay for more oxygen!

3. One of my best friends (who I met online and I'm going to visit this weekend) just found out Monday that she is officially breast cancer free after a pretty tough fight... congratulations Tara, I'm so proud of you for winning the fight and doing it your way... and as always thank you for always being there for me to talk me through my rough days.

4. Well, I'm drawing a blank on a fourth (stupid brain damage)... so here's the poem, which I hope you enjoy (I think it describes well my feelings about the power of prayer... it was a very powerful experience):


At Gethsemani Abbey's Door

I entered the church
More or less a normal church
The monks faced each other
A gate separated us

And then they sang...
Their voices resonating
In the presence of God
Praising Him beyond anything
I had ever experienced

And then they bowed before His altar...
Their hands drawn to their feet
Humility, vulnerability
Announcing subservience
Love...

"Praise to the Father, the Son
And the Holy Spirit
Both now and forever
The God who is
Who was
And who is to come
At the end of the ages."


Oh yeah! a 5th: October 2nd is the second annual Walk Ahead for a Brain Tumor Cure, and thus the return of Matt's Matter Matters! I'll let everyone know when I get a team started up (I don't think they're ready yet).

Anyhow that's it for now!

Wishing you all the very best!

It's Been Awhile...

Hey all!

I haven't had much to write about lately (and I guess looking at my previous post I never even edited it), with not feeling well and being very tired pretty constantly, I've been stumbling through a lack of motivation, but I figured since I'm not doing much on a Saturday night (which is normal lately), I'd go ahead and scribble something up.

To update the previous post, I continue treating the "area of concern" (which the docs are pretty certain is indeed necrosis - a good thing and I'll explain why shortly) with Trental and a Vitamin E supplement (which didn't seem to help, but makes sense to keep trying since it's not giving me any side-effects); I also recently began a low-dose regiment of steroids (bleh), which as usual are wreaking havoc on me with regards to side-effects (more manageable than previous higher doses). Moreover, on Monday I will finally begin a 12 week, M-F per week, hyperbaric chamber oxygen therapy treatment at St. Elizabeth's Hospital in Covington, KY (60 total "dives" as they are called because the atmospheric pressure is increased in the chamber akin to scuba diving - I guess). I personally ruled out Avastin as an option for treating this because (as some of you know) gave me a rather (ahem) uncomfortable side-effect (for those of you who don't know what it was are probably better off). Again, surgery is still pretty far off, but I'm not sure which I would prefer between that and Avastin (if that tells you anything about what that drug ended up doing to me).

Anyway, that's how we're going about treating this butthead (I didn't even realize that could be a pun until I typed it). Necrosis makes more sense than tumor activity simply because of how rapidly the area grew over a month. My tumor has never (to our knowledge) grown that quickly or been that "active", and especially since it was definitely hit with a heavy dose of radiation, it's probably just dying tissue (yay for still having the brain damage excuse!).

During the past few months, I've bounced back and forth seeing an occupational therapist without promising results (I started off poorly, then improved drastically, then collapsed to worse than how I started... all probably due to a splint I've been wearing to stretch out my tendons to help break up some muscular tone in my hand, not to mention my lack of exercising at home due to all the other crap I'm fighting through), and will probably be seeing a certified hand therapist (CHT) while I endure the good times in Covington, KY in a glass tube filled with highly pressurized oxygen force feeding my tissues with goodies - not at the same time... I also recently went to a sleep clinic ("results" Tuesday-ish) to find out what's going on in my sleep, which could ultimately help fix my seizure issues (but probably by using a CPAP - continuous positive airway pressure - machine, which is miserably uncomfortable - I've had one in the past and couldn't tolerate it, but apparently they are more comfortable now). I think I might have mastered the art of adding tangential thoughts within sentences (I feel dizzy just writing that last one, so I hope it makes sense - I'm not re-reading this). I have also been able to get out and walk for short durations, which is helping to strengthen my leg and keep me fit(ish), but again, some days I just don't get off the couch. I've gotten people pretty upset with me for being completely candid about how I'm feeling and/or how I make fun of myself... too bad. I also have enjoyed and benefitted from several massages (I don't think I can go back to not having them). That was a boring/dull ending to a paragraph.

Here's a question to address from one of my OT friends in Pitt:
"Are you experiencing any changes? Are you still using the CIMT or is that on the back burner right now? Also, maybe I should already know this, but is it your primary motor cortex that's affected? Any sensory or anything? I'm totally into neuro right now -- kinda what I'd like to get into one day, when I'm a grown up OT -- so sorry for all the questions."

The changes are unfortunately mostly that I'm getting physically weaker due to the damage from the radiation (though once I get the energy to work it, I'm certain I'll be able to recover to at least 85-90% of "normal" - yes CIMT, among other things besides the dorsal wrist splint, is on the backburner for now until I start back up with the CHT)... The surgery from 2 years ago removed a majority of my sensory cortex, but the radiation hit it all, so there are indeed issues in the motor cortex as well. It also affected my pituitary gland, causing a variety of hormonal issues (not like PMS hormonal, though the roids do that sometimes, but more like I need various drug supplements that the pituitary now struggles to produce).

Whew! I think that covers everything since the end of radiation! I need to write a bit more often I think. I'll try to put some MRI pictures up so you can see the "angry spot" and the other goop.

Also, check this out: my friend is trekking from Fountain Square in Cincinnati to Los Angeles to raise funds and awareness for the American Cancer Society. He is an amazing inspiration. If you get a chance to follow him and possibly throw a few bucks to the ACS through his website ("Donate" at the top of the page), it would be greatly appreciated. He needs all the prayers and support that anybody else does. His site:

http://trekforthecause.com/

Thanks for reading!

Good news/bad news kinda thing

I haven't written much recently because I've been uninspired, a bit depressed, and still unsure about the future. Since radiation is finished, that is no longer an option. Recent MRI's show the possibility of either necrosis (tissue death), or tumor activity - either one is bad, but obviously one is slightly more treatable. I've been on a drug (Trental) which hopefully would help determine if it was necrosis, but the second post-radiation MRI showed an increase in the targeted area. But it's still treatable if it's not tumor...So the options include:
1. steroids (undesirable side0effects
2. avastin (unpleasant treatment)
3. hyperbaric oxygen (probably the next alternative)- if interested check this out http://www.cincinnatihyperbarics.com/hbottherapy.html
4. surgery to remove this small focus of enhancement (not gonna happen if I have the three options above)
5. continuing with just trental and close follow-up (also a small possibility)

I like being aggressive with treatment, but I want to avoid more surgery.

I'll edit this same post after I speak with the docs tomorrow and come up with an official plan.

Take care all!

Light arises from the Darkness

Be warned, the following writings show a very dark side of me which you cannot understand or relate to unless you know certain details about my previous past and (romantic) relationship. If you read this you may feel judgmental about me and realize that I'm not quite the inspiration that you have made me to be. I'm not proud of what I've written, but at the same time it may help you to grasp something about who I am and how I have grown and changed.

A little back story: I was in a relationship for almost 8 years, it ended in January 2008 when I got married, was cheated on, found out I'd be having a second brain surgery, and was finally divorced in November 2008, When I walked into my home, I told the woman of my life about my upcoming surgery, and was told as if she saw it comning: "I don't want to be your babysitter anymore". Well, so much for in sickness and in health. I was deeply hurt and left with a painfully reminding scar of my distrust and lack of faith in people. In the following November, conveniently at the exact (to the day) anniversary of my divorce, her family (who acted like they hated me throughout the 8 years of our relationship), wrote me an email about how they hoped I'm doing well and wanted details about my life. The only response I had in mind were expletives and rage, so I left it alone. Again, a year later, I received another reminder of the biggest mistake of my life. This time I sent my ex a message simply saying, "tell your family to leave me alone". I have severed all contact with that family, I wanted nothing to do with the pain and confusion that I was left with by that family as a whole, with a few exceptions (her siblings, who I hold no grudge against and still in fact miss). And to top it off, recently I discovered that she is carrying the baby of the guy with whom she was cheating on me.

So, after plenty of time spent thinking about it and whether or not I should share it, I wrote this in December of 2009:



I wish I could say that I wish you well
But I can’t do better than to wish you hell
You deserve what you get
And I hope your life is full of it

Because of you my trust is worn
I look at relationships with scorn
It hurts that I’ve lost faith
Except in the thoughts of your wraith

And yet these wound me too
That I could stick a knife in you
And watch your blood flow
Pain you deserve to know

My heart is full of doubt
Anguish I’m never without
I cannot describe the pain
But it’s driving me insane

Because of your malice
Your soul so callous
My wounds refuse to heal
I wish I couldn’t feel

Nevertheless you will get yours
And when it rains it pours
And when it all comes falling down
I bet you’ll drown



Another side note, during this 8 years, I abandoned my best friends, leaving them hurt and scarred themselves, but it was their forgiveness that has made me understand that the pain I felt cannot be forgotten, but it can certainly be forgiven. As I rediscovered these harmful words I have written, I realized the same things could be written about me. And without having written them, I would not have learned how necessary it is to forgive and to let go of the injuries of the past so that I could move on and continue to grow. The scar still lives inside me, but trust and faith are yet again being restored. A particular friend has taught me through not his words (though they have had an impact as well), but mostly through his actions of never leaving my side in spite of how I left him at the curb so that I could keep my poisonous relationship with someone who eventually cut me; he has always been there for me, someone I cannot return the favor, nor can I heal the similar scars of distrust I've left him. I beat myself up and am reminded of all the misdeeds when I spend time with him, but I've learned that I need to let it go.

What does any of this have to do with cancer or occupational therapy? I do not hold a grudge for the impact that this disease has had on my life. I have grown up. Though I still have difficulty breaking this scar tissue with people, I am getting better. Sometimes to move on you have to be hurt and learn how to heal. With cancer and o.t., I have indeed been physically hurt, but I'm doing everything I must in order to fix it. I have since grown from the December poem; I wish I could convince myself to send her and her family that I wish them well, but I haven't yet been able to dig out that scar. Perhaps one day I will.

Mini post

I know many of you have been wanting an update. Recently I have been fighting fatigue, illness, and a somewhat lack of motivation to write. These things happen. I'm due for an MRI on thursday which I will follow up with my oncologist on the same day and will be meeting with my radiation oncologist and neurologist on april 7. Hopefully I will be back to writing soon but please continue to be patient with me and as always contact me at thecancerousot@gmail.com with any questions.

Much love and wishing you all the very best.

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