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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