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!
Saturday, May 14, 2011
Wednesday, April 27, 2011
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!
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!
Wednesday, March 23, 2011
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.
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.
Tuesday, March 22, 2011
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.
Much love and wishing you all the very best.
Published with Blogger-droid v1.6.7
Saturday, February 26, 2011
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.
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.
Thursday, February 24, 2011
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!
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!
Friday, February 18, 2011
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!
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!
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