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!