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

Published with Blogger-droid v1.6.5

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.

Published with Blogger-droid v1.6.5

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!