Update from Mom

Still not up for writing much... Mom wrote this (pretty accurate, with small modifications):

Hi,

This is to let you know that Matthew's latest MRI on October 31 was not very good. It appears the tumor is growing. Matt has begun a new, more aggressive course of chemotherapy. He is hanging in there and handling the situation pretty well[ish], although he is very tired and sleeps most of the time. We know you care and want to share your feelings with him, but are asking that you please not try to contact him (not even through email or voice mail). The situation is overwhelming enough for him and he does not want to talk about it at this time. He will let you know when he's ready to communicate.

Thank you for understanding and for all your thoughts and prayers.


My take:

Things have sucked since Oct. 1... I'm not really the same person I wish I was. I'm still going I guess... I've accepted this is part of being human. Tough road ahead of me... hopefully something fun next update

Lacking Shame: The life of a medical guinea pig

If I don't make fun of it, then who's gonna? (This probably contains WAY T.M.I. for many readers, but if you're intrigued, then by all means read on - random boring "health" details to follow...)

One of the worst side effects of the "poison" (Avastin/Bevacizumab - which was supposed to be over with awhile back) I'm receiving is a nasty nasty rash involving my legs, hands, a few joints, and (ahem) certain regions of major blood flow... Let's call it "body jock itch", except where that normally occurs, it's about a billion times worse, itchier, more painful. Since exercise (walking) has played a key role in general maintenance of my mood/health/sleep/etc. Vaseline has essentially been my best friend, and while I was staring at a large tub of this wonderful de-frictionator, I started writing in my head (this is in no way sexual unless you want it to be) - also there are a few "inside jokes" in the following, possibly to be explained after:


Ode to Vaseline

Vaseline is a wonderful lube.
It's stored in a big tub or a little tube,
Reduces the friction between my legs
When I'm walking; the pain begs
For me to rub it down:
The rashy itchiness makes me frown.
But it makes me smile;
Without it, I couldn't walk a mile.
I love to walk,
And I love to talk.
Without this lube I'd be out of luck
And I'd be stuck
Walking all alone
Along the "tracks" near my home.
I can run off the tracks for an emergency
Because the urge to pee happens frequently;
And then the neighbors get mad at me.
But me peeing on a tree is all they see,
And consequently speak to me very angrily.
I just chuckle: "It was an emergency pee."
Too bad they don't know any better;
Maybe they think I'm a bed-wetter.
But of course I'm not...
But my bladder is clearly not self-taught.
When on my walks it gets distraught.
All thanks to Vaseline.

Completely anti-climactic, I know... but it creates some entertaining imagery especially for myself... my "bladder escapades" - (for example, the short story in the poem that I alluded to is completely true). Somebody getting mad at me for peeing in a tree actually happened - make for some amusing memories (in fact, I had three "rest breaks" on a two-mile walk tonight... I have the bladder of an 80 year old man with an enlarged prostate... probably similar to the guy who yelled at me for relieving myself in his yard... I suppose I can understand, but I hope he can laugh about it by now). Also, I've peed my pants while on the phone talking to my Oncologist (I'm committed to my healthcare, what can I say). Also, having gone through what I've had to has twisted my sense of humor and eliminated my sense of shame and discretion in sharing "personal" (what might typically be construed as embarrassing - a word I don't relate to well) information. The overly-stated cliche that "life is too short" no doubt applies to "taking [life] too seriously" and necessitates a healthy sense of humor. Therefore, if something unfortunate happens to me, I find a way to laugh with it or at it. This entire blog makes me wonder how trying to get myself back into school is going to go...

Also, here's a sincere thank you to one of my best friends and his family for sharing their beautiful North Carolina home with me during a short vacation... It couldn't have been more relaxing, and it was great company... I am very lucky and thankful to have you in my life, and I am always keeping you in my prayers.

BORING HEALTH STUFF:

1. MRI scheduled for Monday... I feel like it's going to be good... thanks in advance for the prayers and good-vibes

2. 3rd treatment of Bevacizumab next Thursday

3. My symptoms are gradually and gracefully improving with a combination of hard work, exercise, good rest, a positive/optimistic attitude, and presumably effects from this wonderfully side-effect-alicious drug killing off some necrosis (caused by radiation - no apologies necessary Dr. B. - I would never have gone for anything differently and it was absolutely worth a shot), and killing maybe a bit of tumor that survived the radiation... only way to know for sure is to cut it out - ugly ugly side-effects from surgery.

4. If my "nether regions" remain pain free, I will no doubt be participating in the Walk Ahead 2011 on Oct. 2 (see previous posts for details)... Well I will definitely be there regardless of how I feel and I look forward to seeing you there (if you join my team you'll get a cool "Matt's Matter Matters) t-shirt from my family and me - we're having about 50 made so I hope at least that many of y'all join us) :)

5. Not so boring, but I recently got approval to drive... which is actually beyond exciting.

I think I've covered it all... it's pretty late and I'm not really thinking straight (I'm a natural poet).

Take care everyone and wishing you all the very best!

Matt's Medical Madness (Update)

Hello all!

I spoke with a neurosurgeon today (the doctor that performed my original biopsy), and received what I perceive to be excellent news. He said that the current situation looks like the result of radiation necrosis (aka damage from my most recent treatments a few months back), and that I'm receiving appropriate treatment (Bevacizumab, which I had my second dose yesterday). He feels confident that there is no need to do any further cutting (brain removal, etc.) and that based on a short neurological exam and seeing me in person that I am doing well. The only down-side is that I have to deal with the unfortunate side-effects of the "poison", including a pretty nasty rash along with waking up at night with extremely painful muscle cramps ("no pain, no gain" - I "hate" cliches) in my left side muscles (which is also a good sign that the drug is working). I am working on reducing the amount of meds that I have been taking every day (call it about 37-40 pills), which is pretty sweet. I think my liver and kidneys are looking forward to that. I am also busting my butt doing O.T. exercises as much as possible and seeing a Certified Hand Therapist (CHT) a couple times a week, as well as walking as much as I can (exercise is excellent for patients undergoing chemo, and it's great for everybody anyway). My next MRI is scheduled for a couple weeks from now and I am due to visit my Neurologist next week, which I am excited about... the docs in Bloomington are fantastic (not that the rest of mine aren't... I think we have a mutual "love" for each other... we always keep humor in medicine and my personality is perfect for that - I like to brag about that). Another potentially good piece of news is that, depending on approval of the Neurologist (which could make him my favorite person ever, except for my parents who made me - eew), I could get my driver's license back since there is allegedly no Ohio law pertinent to seizures and driving... just obnoxious paperwork and perhaps another driving exam. Anyhow, I am extremely happy with how things are going and as always I'm looking forward to the Brain Tumor Walk on October 2nd (if you have anything to spare, please make a donation, join my team, or continue to provide my family and myself with your tremendous amount of love and support).

Keep the faith! - sigh, another cliche.

July-August Update...

I’ll start with something I’m hoping most people will read so I don’t have to constantly repeat myself… So here’s my current health situation:
I’m kind of stuck in limbo… recently I’ve had a few “ugly” MRI’s, meaning that the doctors aren’t quite sure what’s going on inside my noggin’… It could be necrosis due to radiation damage, or tumor growth, or swelling/edema. Instead of using MRI’s, I will eventually have a PET scan which should hopefully help determine what’s going on. We’ve experimented with a variety of treatments: steroids, 66 hyperbaric oxygen (HBO) treatments (as of today), possibly up to 90 (which is extremely rare), more Avastin (Bevecizumab)/“poison”/chemo/monoclonal-antibody, which is rather unpleasant I must say due to its nasty side-effects, and the possibility of surgery to remove all the questionable “damaged” parts of my brain, which would most likely leave me hemiplegic (half paralyzed… on my left side since a lot of my right brain would be cut out). Again, who knows… I’m kind of just along for the ride, somewhat reluctantly going through the treatments my doctors suggest because I believe in them. I’m still doing occupational therapy as much as my fatigued body will put up with (not very much or very often), just in case surgery gets ruled out, and even in case surgery happens so that I’ll still be strong enough to help recover. I’m bouncing through a whole heap of meds, constantly trying to find a good combination to help me feel better. I’ve recently started on a BIPAP (a machine that helps with sleep disorders, though I’m not convinced it’s helping too much)… I get to wear a mask that makes me look kind of like a fireman, which I would have loved when I was five, but is really just kind of annoying. I guess that basically summarizes it.
And now for something a bit more “unique”, the part of writing this blog that I enjoy the most:
I met some of my best online friends through an internet game. I played under the alias BaldNScarred, which is an obvious physical description, but indeed somewhat metaphorical, which you might recognize from previous posts. The other night I woke up thinking about this name and how it is such a good fit for me; I wrote this poem about it (will finish it as I sit here):
My name from the truth isn’t too far.
I am bald; I am scarred.
Brain cancer has made me so,
But bitterness or anger doesn’t change it though.
I do not live in fear,
But instead I’m a broken soul.
When love, reality draws near,
I withdraw; hide in a hole.
“Scarred” is often mistaken for “scared”,
But unfortunately it is a bit true.
Metaphors, memories, life’s moments,
Often life’s opponents.
My body, wounded and weak,
Crumbling slowly; healing I seek.
Patience, prudence unpeered
Strong, stubborn soul riding stressed,
Unsteered.
Stuck in the unknown,
Not sure where it’s going
Blindly following what I’ve been shown
A painful process, predictably annoying.
BaldNScarred: bald is beautifully shiny;
Scarred causes me to be whiny.
But I try not to complain too much,
For I’ve been given a gift.
This gift is not sought as such,
But it creates a rift
Between you and me;
And I can see;
I’d like to show you what I’ve learned;
I’d like to lead you to what you’ve yearned.
Can you tell me what’s missing in your life?
Is it worth going through the strife?
Think about your troubles, your sorrows;
Will they still be there tomorrow?
I know mine will;
They’ve given me a skill
And I often take it in stride,
With this strategy, I confide
In you that often through the pain,
In spite of the feeling that nothing can be gained,
Your struggles make you strong;
Too often, giving up is a poorly, mistaken song.
Accept who you are;
I sit here smoking a cigar.
I’ve fought through cancer,
But I do what I enjoy.
Life is my answer,
Dare I try to destroy?
I’m a soul in a borrowed body;
What am I to do with it?
Don’t take this as a decision, shoddy,
I use it to show off whimsy and wit.
I take my bald; I take my scarred, sometimes scared
With time, patience, I will be spared.
Live and love living.
Give and love giving.
Believe.
You’ll feel relieved.

I guess a way to summarize what I’m saying in this poem is I accept who I am, and I accept the rough road I have to ride on. Unfair as it may seem, to me it’s nothing I would change (except for getting through all this crap and showing that it can be done). I believe the choices you make and the results of those choices have lessons to be learned, but I question whether or not they are worth going through. I hope that you don’t have to go through what I’m dealing with, but if you do, it is definitely worth seeing where it takes you. Indeed, life is difficult, but memories from the way you live are what you take with you in the afterlife; being a good person, creating good memories, fighting and surviving, yet enjoying every moment, somehow…
I’m sitting here smoking a cigar and having a drink with one of my best friends in the world; a person I’d never take for granted. Knowing how much we’ve “been there” for each other is something worth carrying with me. Many people question how, after cancer, I can be so wreckless that I continue to “abuse” my body, but I’m doing something I undoubtedly enjoy.

Well I typed this up a few days ago... more to come soon, barring further distractions/fatigue...

First of all, the 2011 Walk Ahead for a Brain Tumor Cure is official! One very important thing to keep in mind is that Brain Cancer Research is poorly funded due to the research/drug companies' lack of potential profit due to the rarity of brain cancer (I think it's in the small 1-3% of cancer types). Specific details about the Brain Tumor 5k are on the following link:

http://www.walkahead.org/5k-walk-run

If you would like to join my team (Matt's Matter Matters) to participate:

http://registration.walkahead.org/walkahead/CompleteRegistration.asp?fkroledescid=1

If you would like to donate to the cause without joining:

http://registration.walkahead.org/walkahead/CompleteRegistration.asp?fkroledescid=1

Thank you again to my amazing Uncle Don and new Aunt Debbie for requesting donations in lieu of Wedding gifts... Congratulations! You are both amazing and love you both!

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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Sometimes it catches up to me

Well, I have to admit
Sometimes I feel like I’m too young
To have to deal with all this shit,
But here’s the song I’ve sung:
I won’t say it isn’t fair,
Because clearly it’s been an opportunity
To become aware
Of how all this has helped to form me.
From going through chemo and radiation twice
To endless occupational therapy
I’d say it would suffice
To say I’m tired, I’m beat up, but I’m free.
I’ve discovered who I am;
I’ve been given a gift;
I’ve passed the exam;
My life has taken a shift.
I always like to joke
That I’m 27 living in an 80 year old body
And when I croak
At least I won’t look so shoddy.
But people don’t seem to like that,
Not that I really care…
I will always be Matt,
Of that I’m fully aware.
I don’t take life too seriously,
I love to keep things light,
I don’t live mysteriously,
Everything is in plain sight.
Sometimes I will be blunt,
Harsh, forward, shameless.
But I always confront
That my intentions aren’t aimless.
So as you can see,
It isn’t always easy,
Sometimes it catches up to me,
But from life I do not flee.

An Update!

Hey all!

I guess it's been awhile since I last posted (well it feels like it has anyway). I still haven't received any new questions, but I think I might be able to answer some of what's probably on your mind. Since leaving Bloomington, I have been incredibly busy visiting with a heap of specialists and spending most of my mornings doing various activities to keep myself busy, including sparing doses of occupational therapy (still don't have much energy), reading, watching bad movies, occasionally shopping to adjust to a new wardrobe (thank you steroids for ruining my hard work to lose 30lbs last year... guess what my new goal is once I'm finished with the 5000-7000 calories I ingest per day on average). I've also ventured into not shaving, at all... and on several occasions I've been asked if I lost a bet (which tends to make the people who ask feel awkward, not that wanting to ask why the sweet "do" without being able to encourage themselves to ask doesn't...), so I find it helpful to occasionally wear hats and/or cancer-related shirts (except I no longer fit into most of the shirts - boo). I'll be adding pictures to Picasa so that you can see the progress and make fun of how horrible thenon-baldcancerousot looks.

I still don't really have much of a clue what my future holds, except for, again, many many doctor visits over the next several months. I recently developed a very nasty rash (I won't specify where - I'll just say ouch), which I'm hoping to have results from a biopsy quite soon. I've seen a couple Dermatologists about it, one thinking it could be linked to one of the more basic drugs I am/was taking, the other thinking more on the lines of an after-effect from chemotherapy or avastin (which would both be extremely rare... rare enough in fact for the docs to take pictures (neither doc looked absolutely convinced about the particular source of the reaction though).

I had my third seizure of the year (a drastic improvement from last year - I had about 7 by this time then) about 4 days ago. It was actually somewhat of a relief, as I tend to tense up a bit and not feel too well throughout the day or days building up to one. Unfortunately, due to the rash and drug concerns, we are kind of just waiting things out until the rash is gone until any drug changes are made, and of course then I will be monitoring VERY closely for subsequent rashes.

So, my future plans currently don't include much, as I continue to have to fret about day to day things, such as a fever yesterday, random potentially life-threatening rashes, difficulty with consistent sleeping, more doctor/occupational therapy visits, and staying rested and focusing on healing. One of my "longer-term" goals is to finish out Anatomy from last Summer, which will happen by the end of this upcoming Summer at the latest; hopefully I'll have the energy to get to it sooner, but again, one day at a time is best. I'd like to visit with my older brother and sister-in-law, be it here or up in Wisconsin, I have a trip with my friend Andrew tentatively planned, I want to go to a concert (the Avalanche Tour if you're interested), but I'm concerned about how my head will respond to that, I am hoping to go to Vegas in maybe a month or two, but not sure if I'll be able to, and I will absolutely be making a visit to Pittsburgh to visit some of the greatest "distant support" I've received throughout this ordeal (the exceptions to the group at Pitt. know who they are). Beyond all of that, everything is still up in the air. I don't know for sure yet if I will be continuing Temodar (chemo) for longer. The plan before the rash was to go back to a 5 days a month (one week in a row) of a higher dose for (I think) about a year, but that may be of concern now thanks to the rash... I'm still rooting for continuing to be aggressive with this blob, though I'm also convinced the majority (if not all) of it was destroyed with radiation, so this may again be overkill but the intention is for it to grab onto the small "leftovers" that radiation may have missed.

I think that should cover just about all the questions everyone may have had/wanted to ask but didn't/were afraid to or whatever. I'm trying not to talk about much related to this stuff in person because I want everyone to have the same story and I'm more scatterbrained than I used to be now, so you can imagine how that must be for me. So if I haven't answered any of your one-on-one questions to your liking it is best to email me so I have time to think it through and share it with others (anybody who reads this is encouraged to do so, regardless of whether or not you know me... I will not share any of your personal information unless specifically requested to do so)... also, anything you think others might like to have or see posted in this blog can be emailed to me and I'd be happy to pass it on to whoever reads this.

Again, that email is thecancerousot@gmail.com

I hope you all are well!

So I've only received one question to my cancerousot gmail account so far, but I found it amusing enough to post...

"Yes, hello, longtime reader first time e-mailer.

I was wondering how exactly you manage to be such a ladies man and what, if anything, I can do to copy your success. Thanks, and I look forward to your speedy reply."

To answer your question required literally no thought on my part. I simply act like myself. I guess I must have the personality that "gravitates" the ladies toward me (not to mention my unrelenting handsomeness). I'd love to share said personality, but I believe that is impossible, but feel free to do your best to emulate me.

Good luck!

Update to "Some thoughts about meeting a new cancer patient"

My good friend who recently began her battle with breast cancer shared this poem with me. This feeling often translates to things beyond cancer, particularly when someone receives recent "emotionally tasking" news. I think that we seem to be on the same page about how we often feel. Here it is:

A friend of mine passed away this morning...I wrote this today.
Don't tell me that you understand and don't tell me that you know how I feel.
Don't tell me that I will survive and to look for the light because right now all I see is night.
Don't tell me this is just a test and that I am strong and will persevere. Inside I feel weak and I am hiding from the fear.
Don't tell me that I am chosen for this task apart from all the rest because I am the strongest or the best.
Don't come at me with answers that I know can only come from me.
Don't tell me how my sadness will pass and that one day soon this will be a distant memory.
Don't stand in judgment of how I handle this pain.
Don't tell me how to suffer and don't tell me how to cry.
I need you and I need your love, unconditionally.
Accept me in my ups and downs and know that sometimes I just need you to be silent and let me be.
I need you to hold my hand and let me cry. I need to hear you say I love you and no matter what I'm on your side.

I think the last few lines really hone in on what's most important, that you (the "outsider") want to say you "understand", that you feel like you need to do something, and often it is best to just close your mouth and open your ears. We love to receive your support, we know that you care, but often it is best just for you to be there.

VERY quick update

It's been a long long day, super tired.

Got my very last treatment of Avastin today, so we're down to one treatment to finish (even though I've already kind of finished it once during this time). To answer the most common question: what's next? I don't know. One day at a time is about as much as I can handle. I'll continue to see a bunch of doctors over the next few months... mostly specialists of some sort. First MRI is sometime in March, but it won't reveal much of anything because of swelling, but at least will give an idea of how much swelling and what areas of the brain got hit by the therapy, next MRI is sometime in May-ish, which still might not be enough time to clear up the scan enough for a better view. I started Occupational Therapy with my old buddy at Tri-Health P.R.O.S. who helped get me to the point I was at before I relapsed in May (I was getting very strong and fit... damn you steroids for making me fat...ish). Seems we may have a bit harder work to do this time; I'll be getting botox in a couple weeks to weaken my flexor muscles in my left wrist, which will ideally allow me to open up my hand more by strenthening the extensor muscles (super tight tendons sorta thing). But again, everything is based on how I feel each day. No clue about vacations, returning to school, etc... not even thinking about it... focused totally on getting strength and energy back, trying to eat healthy... who knows. Anyhow, I'm exhausted. I'll try to write more tomorrow (This doesn't qualify as VERY quick by the way... I ended up rambling, pretty standard).

Hope you're all doing well!

Some thoughts about meeting a new cancer patient...

One of my biggest peeves
About this stupid disease
Is when people don't know what to say
But they feel they must say something anyway.

I can only speculate as to why
The most frequent talk is about knowing someone who died
I guess it's an attempt to sympathize,
But in my eyes
It made it difficult to want to keep talking,
To shut myself out from that person,
Knowing well that it wasn't intended that way.

And then the situation worsens,
And they say they understand;
I wish they'd go away
Because my response used to be ill planned.

I'm guilty of becoming enraged at people who say "I'm sorry".
Perhaps you should consider adding "to hear that".
When I hear "I'm sorry" by itself, I take it as expression of guilt
Despite everything I know about good intentions.

Oh, that sucks, I lost the rhyme,
And I'm getting tired and running out of time.
But I really wanted to relay,
Be very careful what you say
When talking to a recently diagnosed friend
Because often this disease feels like it's the end.

There will be more on this later,
But for now I must rest.
I don't mean to sound like a hater,
Some of this has been stated in jest.

Short Summary - more to come

Today marks the end of the second round of Temodar (wash out phase begins tomorrow), tomorrow marks the end of Avastin treatments (which began in May of last ear) hopefully forever. And I'm already finished with my second round of radiation. It's been a long, tiring road, but it's just the breathtaking beginning of an amazing, awakening adventure.

The Importance of a Good Rapport with Your Medical Team

Hopefully most of you are in better shape than we cancer patients and only have one or maybe two doctors to see on a regular or occasional basis, but for those of us who see specialists seemingly every day (not just us but everyone really), it is absolutely crucial that the doctors/therapists/dentists/whoever it may be are people (key word - people) with whom you can establish a good rapport. Communication between the patient and the "treatment specialist" (or whatever you want to call them) is one of the most important skills that both must have. Moreover that skill must translate to the patient's care providers (for example in my case, what I mean by that includes primarily my immediate family members).

With technology constantly improving our abilities to communicate, I find it a very valuable tool to integrate into my personal care. I find it very helpful to the medical team if I know my body as well as if not better than they do, and therefore I keep track of a lot of pertinent things. I use spreadsheets to monitor sleep patterns to help my Neurologist, I also use them to monitor my blood pressure (especially since it has been particularly high lately and heart disease runs in my family). I don't know how truly accurate/useful they are, but I bought an automatic blood pressure monitor so that I could monitor myself at home and keep my doctors informed (it is important to me that my doctors like regular updates on these seemingly small details). Another spreadsheet tracks my occupational therapy exercises that I (am supposed) to do every day, which I use to both make sure that I do my homework and comply with the therapist... it also keeps me motivated, especially when I find myself in a rut and/or overdoing it. All of these tools are important in establishing a good rapport with your doctors and such, and also they are useful in helping to get to know yourself better, both physically and emotionally. At least they work for me... you may have to figure out what works best for yourself. However, at the same time, you must understand that the doctors and you must be able to come to a mutual decision about your care, and neither one should have total control. Essentially, I feel it is important to be able to say no in spite of the fact that the doctor may disagree with your decision and (hopefully) feel that it is in your best interest to do what is asked. Sometimes saying no is the best decision. I could have been paralyzed back in 2005 had I not said no (this is an extreme case, but nevertheless an important point).

Anyhow, I'm off my soap-box for today. I wish you all the best in the near future... I will be continuing to take things day by day, minute by minute. Again, I ask that you please email me at thecancerousot@gmail.com if you'd like me to answer some questions. I'll hopefully find a lot of repeat questions that I can address to everyone at the same time, but also I'd love some questions that may be more "involved"... don't be afraid to ask anything... I won't share who asked what unless you tell me to do so.

Until next time (and after obviously), take care!

Radiation Graduation

Good Morning Readers!

So I graduated from Radiation on Wednesday! What a ride it was! From the stresses of driving (riding) back and forth between cities receiving poison at one place, destructive "aerosolized" as I like to call it (albeit incredibly accurate aerosol) radiation at another, taking daily pills of poison, and being a needlepoint project for the nurses at both, I'm so glad to have a bit of a "break" (still on the daily chemo - Temodar, with another injection of Avastin on Tuesday). Since Wednesday I've kept very busy, meeting a new endocrinologist who seems to enjoy my humor and respects that I'm very candid and straightforward... I think we will get along very well. I've also got appointments to begin Occupational Therapy next week, as well as appointments with several other doctors. It's been pretty exciting and a great feeling to know that I get to relax but also keep myself busy enough to not go crazy with boredom. Unfortunately, Gambit has been very sick the last few days, so he has needed his space... I miss his normal personality, but hopefully he'll get better soon since he saw the vet yesterday.

Anyhow, I have a small request from you all because some of the questions I think have already been answered in the blog, as well as I have answered the same questions from most of you. So if you could help my fried brain out a bit, I'd love to address all of your questions, but could you please email me them at thecancerousot@gmail.com

Thank you for helping me out! Look for another update soon!

Enjoy the Super Bowl!

Optimistic

Eight weeks have gone and passed;
I wasn't sure if I would last.
But the time has come to raise the mast,
Sail along and continue this blast
Of a ride my life has been.
I believe that news will be great,
But a few months I have to wait,
And during that time I appreciate
The value of patience and an optimistic state
Of mind.
I cannot fall behind
I remind
Myself to find
All the beauty in this seemingly cruel world
Into which we've all been hurled.
Like a flag coming unfurled,
My heart becomes twirled
With thankfulness and gratitude
That I have a positive attitude
And that I'll travel to any latitude
To keep on being that dude.
This radiation treatment is coming to an end,
It made my body contort and bend.
A painful round each day would send,
But I was greeted each day with a smile from a friend.
The people I met who have taken care of me,
Who have always seemed to want to be
There doing their best to make us tumor free...
I will leave here optimistically.

That was kind of a tough rhyme to throw together, but I've been inspired by you, by everyone who has shown support for my family and for me. For awhile I truly couldn't figure out what I was putting myself through this for, but I think I did it to set an example for others. There is always hope. Every choice you make is important and should be with good intent. I am the t-shirt guy who likes to bring humor each day to treatment, and I think one of my sweatshirts may have upset some patients, "my cancer is rarer than your cancer." I wasn't thinking when I wore that one, except about myself and receiving attention, and I apologize to the patients who may have been upset by it. My goal is to approach living with cancer with humor, optimism, and yes indeed sarcasm (that is part of who I am). I look forward to many many more years of accidental distaste, but I hope to fail miserably in that department and continue to teach optimism, patience, how to laugh in despair, and to never give up.

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A Bit "Jacked Up"

It's almost 4 in the morning and I can't sleep,
One day at a time was the pace I planned to keep;
But now the radiation count is down to three,
And from then on I'm at God's mercy.

I have yet to say a prayer for myself,
But I have been fully focused on my health.
I feel that the job is not just divine,
But instead I've been given the resources to do mine.

And I know that I've been sent help from above,
From people I know and don't know sending their support and love.
My heart is full of undying gratitude;
You've helped me maintain my positive and optimistic attitude.

This blob in my head will soon be beat,
My mantra is to repeat
That no matter what happens in the end
I took advantage of the resources that God did lend.

My spirit is stronger than ever,
I've made a contract I cannot sever.
I'll continue to fight, I'll finish my part,
I haven't wasted a beat of my heart.

These obstacles were placed in my life to change me,
To make me the best person that I can be.
They've given me the opportunity
To celebrate life and all its beauty.

I'm sending this message to all of you
That there is nothing that you can't do;
If you give it your all, and still you fail,
It's a victory because you've left a trail.

Beaten down by the trifecta of tumor destruction,
I've stood myself up to conquer this cranial corruption.
Poisons and protons brutally beat at my brain,
Yet still I maintain.

Ready to finish this out, just three more days
A battle of endurance, a mental maze.
My body is stuck in a drug-induced haze,
But my mind is unclouded and through clear eyes I gaze

At the demon that once tried to take me down,
That tried to convince me I couldn't win this fight.
To that evil thought dressed in an appealing gown,
I'll have to pass, push away with all my might.

I will be fine.
My life will be mine.
And when it's time to resign,
I will be fine.

I'm going to miss this place in a few days...

Most days feel kind of like I'm sitting in an airplane, minus the part about traveling somewhere (well except when driving back and forth between Bloomington and home of course). A bit contained, my life is basically in the hands of (hopefully) experts of their profession. I am excited to be here, perhaps I'd venture to say lucky.

The crew in Bloomington couldn't have made me feel any better about the decision to receive treatment there. Their dedication to their work, their smiling faces, their appreciation of my t-shirts... what a great group of people. I will miss it when I'm no longer being treated here (not so much the crispy fried brains part, but obviously the people). Fortunately I've found an amazing Neurologist in Bloomington, which gives me an excuse to stop by for the occasional visit.

Just like the other people who have influenced and changed my life so much, my other doctors, my friends throughout the world (whether I've met them in person or not), I treasure and want to do everything to remember you all and keep you close to my heart. I hope that I leave behind similar sentiments.

You are all the best I could ask for.

An extra day of "Rest"

Well today was supposed to be a repeat of trifecta treatment today, but the docs had a few extra concerns that shortened it to just double poison, sans radiation. The good news from this minor "irritant" as it may be called is that I know my doctors are certainly working in my best interest and making sure everything in my brain is still doing ok. I had to get a CT Scan to check out the blood flow and a few other details inside the noggin, and everything looked relatively fine (all things considered I suppose accounting for the wrecking balls, flying daggers and oil spills being constantly thrown at it). The end of this story is I get to sleep in my bed tonight instead of a hotel, which makes me happy.

I see my neurologist for a follow-up appointment in the morning... so far only 2 seizures this year (it's was 52 total last year so definitely an improvement - though the rest of treatment has potential to change things up a bit... let's stay with reality for now). Also I continue with Occupational Therapy at Bloomington Rebound, which has done a phenomenal job in tandem with the team at Cincinnati Children's I saw prior (and perhaps a tidbit input from myself - I'll pat myself on the back) in increasing my overall muscle range of motion and in almost eliminating muscular tone in my hand (as a consequence it is slightly weaker, but eventually the strength will return).

Anyhow, tonight's update is again in gratitude to my family, especially my brother, mother and father for providing me safe (albeit occasionally aggravating) transportation to Bloomington to get the blob blasted, and to other places as needed. I thank my good friend Nick for providing me with revitalizing massages the past two weekends (I'd recommend that not only all cancer patients, , but everyone receive these). I thank my good friend Andrew for always being there to talk over coffee or anything else. And of course, I thank you all for your continued support and prayers and would like to also ask for some prayers for some good friends of mine who are also going through some tough times of their own. It seems we all have some sort of cross to bear, and I will without a doubt say that each is in equal need of your prayers and support as I am. I wish you all the best.

One final thought: Congratulations to a good friend who I'm not sure if he would be comfortable with his name being shared, remission accomplished after just a short few months of treatment... an absolutely amazing recovery!

Just a note about one daily struggle

Sleep is still fighting me
But I'm not going without dreams
It's a battle constantly
Trying to hear the soothing streams
Of water ripping through rapids
Or wind unsettling leaves
Sometimes I feel trapped
But I still believe
That I will be fine
Even through this fight
Victory will be mine
And my mind will defeat the night.

I hope you don't find this to be too disconcerting. I find that writing occasionally soothes my busy mind, and I thought I'd share a bit. Hopefully it will put me at ease for a bit and afford me some more healing rest

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A Second Milestone and an Expression of Gratitude

Yesterday marked radiation treatment number 22 of 33. For those of you that struggle with fractions, that's two-thirds of the way done (I'll admit yesterday I said 2/3 away from being finished... so you don't have to feel too bad... but at least I can blame it on my brain getting fried). So 11 to go is pretty sweet (radiation, and I believe Temodar, will stop after Tuesday, Feb. 1). My doctor is incredibly pleased with the way things are going so far and seems certain that the treatments are helping. However he remains cautious of what possible damage/side-effects may ultimately result from this. But we can worry about those issues if/when they arise. For now I'm just happy to have a short 3 day break from it all.

Speaking of a three day break, I have to admit, the biggest trooper throughout this ordeal is certainly not me, but instead my mother, who has to put up with me (excepting for the weeks that my dad and brother have driven me). I constantly nag her about her driving (rightfully so if you ask me), I make her play boring games of connect four with me so I can get some therapy (I don't think she minds this too much), I make her watch movies that a mother couldn't possibly like, I occasionally snap (probably a combination of me taking steroids and her talking too much) and yet, for the most part, she gets through all of these things without batting an eye. We've always had a great relationship, but often mildly abusive toward each other in a somewhat twisted way which outsiders might not appreciate... but we understand each other (plus she started it when she made me). My mom is the greatest, and I've been blessed to have her here to help me get through this. Thanks mom and love you! Also, no offense (not that I need to say this to you, but for the sake of other readers), but I'm looking forward to continuing this break from you next week while Joe gets to deal with my brain damage.

One of the coolest things I learned this week from my mother is that there are people in my family holding a sort of prayer circle where there is constantly someone in my family praying for me; each hour of the day (be it 3AM, 9PM, whenever), someone in my family is scheduled to pray for me. I have been added to prayer groups throughout the nation; my cousin sent a bulletin from her church in Texas for example, not to mention my friends in Pittsburgh. And even the waitress at Bob Evans one morning noticed my Chemo Brain shirt and told me she'd light a candle for me. I'm not one to pray often, but I do believe that there is power in prayer, and I am so grateful to have so many people that care and go through so much themselves to ask God to help.

You are all amazing. You might choose to think that I would be as strong without you, but you truly are my motivation, and I love you all for it.

Motivation

Spoke with a demon last night;
Tried to talk me down.
Said it isn't worth the fight,
Said that I would drown
No matter what I try to do.
It tried to sound sincere,
Its despicable grin grew.
With eyes full of delight,
Said I had nothing to fear
If I went with it tonight.

Asked what's my motivation,
I couldn't find the reply;
Thought about God's creation.
Then I looked the demon in its eyes
Darkened with black fire,
And I said that I despise
The request that I retire.
But it didn't give in;
Said it's not worth living,
That my life's been full of sin,
That God was unforgiving.

I called the bluff;
I know that life at times is dreary
But I haven't had enough,
And I'm still not weary.
I pushed the demon away
As I said that I'm staying here;
I will not be led astray;
I will not fear.
My life is incomplete
Without winning this war.
I was placed here to defeat
This stubborn tumor,
To show people the way,
To tell people not to quit.
I'm just writing to say,
That demon's full of shit.

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Living Life to its Fullest

The motto of the American Occupational Therapy Association (AOTA) is "living life to its fullest." As I type this incredibly and perhaps frustratingly slowly (since I'm typing this using only my left hand), I ponder what this motto means to me. A goal of OT is to help disabled people learn to live happy, functional lives. I am disabled on the left half of my body (left hemiplegia), a consequence of removal of part of my brain. My therapy consists primarily of hand and arm rehabilitation exercises, many of which can be seen on my youtube channel, in order to regain functional use of the hand. Other individuals may do cognitive exercises to help them learn or relearn to count money, follow instructions, handle social situations, or a litany of other possibilities (in my case I'm trying to relearn to physically handle money as opposed to cognitively... Though I could get along using only my right hand, Occupational Therapy will help me to be able to do this with both hands - insert dirty joke here). It is certainly a cognitive exercise to handle the daily frustrations caused by my disability (I like throwing things occasionally, it's quite therapeutic... thankfully my dog like to chase them).

Living life to its fullest isn't necessarily about "getting back to normal," as often this is not even possible, but it is about being happy with what you have and taking advantage of the opportunities to improve yourself. In my opinion, everyone could benefit from a little (or a lot) of OT.

Okay, I'll admit that I used my right hand to type part of this...

The Trifecta...

On Monday (and after Tuesday), adding Temodar (another chemo) to the mix felt like it was going to make this fight much more difficult, but today gave me a different opinion. Before taking my first dose of Temodar in almost 4 years, I thought about my first 18 months of treatment, receiving Temodar for a week out of each month, and it was a manageable, but somewhat miserable 18 months. This time, I'll take it for 21 days in a row, while also receiving IV Avastin in Cincinnati next Monday (and still about every two weeks subsequently) and, on top of those two, radiation in Bloomington (thus, lots of travel is included in this mess too because I like to see my dog on the weekends, and I guess my family and local friends too...) every weekday for the next 18 weekdays except for Martin Luther King Day... not exactly how I planned to start the New Year (you can chuckle... I did).

I remember how I dreaded that week in each month that I voluntarily put poison (chemotherapy is derived from mustard gas if you didn't know - there are many interesting articles about it on the internet... check 'em out) in my body, but I knew that it was worth the nausea along with the other not so fun side effects, as I hoped to kill the blob. Unfortunately, it didn't quite get the job done. Now I'm drinking the same chemicals down again, knowing that many of the tumor cells left have a high probability of being resistant to the drug and also that 21 days in a row will probably feel much worse than one week out of a month (read on, there is a good reason). Temodar makes the radiation more effective by making the tumor cells more sensitive to damage caused by the protons. Moreover, Avastin helps to protect the healthy brain from necrosis (tissue death) caused by radiation. Thus, the combination of Temodar, Avastin, and proton beam radiation makes the ultimate Trifecta of tumor destruction (I am a nerd... I will not apologize for that cheesy statement).

Will I feel like total crap for the next few weeks? Probably, but it will be worth it. As we continue to blast this thing with protons and pump it full of poison, I'll continue to get headaches, at least a little nauseous, and who knows what else (balder on my already bald spot...), but like I said in an earlier post, I'd rather go for a walk in the rain than not go for a walk at all.

15 days of Radiation down, 18 to go;
3 days of Temodar down, 18 to go;
I have no clue how many more treatments of Avastin, but who's counting anyway?

New Year's Resolution

Every year I go easy on myself and resolve to simply get better, and this year is no different. Amidst this seemingly endless battle with cancer and insomnia (both of which have been being relatively unsuccessfully treated for quite some time now), I remain resolute and optimistic that my health will get better, as long as I continue to do my part.

It is becoming more difficult to maintain the pace of daily occupational therapy, but I still make sure to knock out at least half my list of (currently) 54 activities (some of which I intentionally do only every other day). I'm currently wearing the new splint which is gradually working the muscular tone out of my hand (it not longer unconsciously balls up into a fist, which is pretty awesome), but consequently the stretched muscles are becoming a bit weaker,which is all the more motivation to keep working them daily.

This journey will become even more tiresome, as on Monday I will be starting 21 straight days of chemo (Temodar - aka temozolomide) on top of the Avastin (aka bevacizumab, which sounds cooler than Avastin), and of course the radiation will continue (rounds 12-16 this week! - ends just short of the halfway point). But, tired as I will undoubtedly get, I must continue to push through the therapy, beat down the impending nausea, and force myself do keep doing the other things that make me happy (hopefully soon those will entail a combination of sleeping, doing therapy, spending time with family and friends, and more sleeping).

Here's to a very happy new year to you all, and I hope your resolutions aren't quite as difficult as mine... because I like to be the best at everything... well I at least hope your resolutions are successful and you don't have to repeat them next year. The best at everything joke was probably missed by you if you haven't figured out that I also like to be sarcastic.

Happy New Year's Resolutions! Good luck!