Bricks for Young Adults Booklet Release Party – 3/20/2010

I’ve mentioned this before, but wanted to mention that the booklet is being released this month, and my contribution is indeed inside it.  Charissa is doing amazing work with this, work I’d love to do more of if I was’t so hung up and lazy.  I’m debating whether to read my contribution at the party, I’d definitely like to attend but we’ll see what happens.  The poster is of course the work of the incomparable Mike Budai.

BricksPGH

Brick by brick building a structure to support young adults in my community.

Bricks is a project started by fellow ‘Burgher Charissa to help build a support structure for young adults here in the city.  Like many of us, she’d dealt first hand with cancer and had to face much of it without the support we assume is there.  I remember when I was getting treated and when I returned to Pittsburgh after my treatment I felt lost and alone, and I know that a lot of that was me; but I also remember searching for support groups for people like me and really couldn’t find anything.  Breast cancer, cancer for folks a lot older than myself yes, but there really wasn’t anything for  young survivors, and back then it could have really helped.

As part of the BricksPGH project Charissa is putting together a booklet of stories from young adults who have dealt with cancer and I am truly honored and humbled to say that a story from my experience was accepted to be a part of it.  I just received word that the layout is almost done so it sounds like it will be out soon.

I know I’ve mentioned it before but there is not a day that I don’t think about my experience with cancer.  Doing this actually lifted quite a burden from my mind, a weight I didn’t know was there.   Thanks Charissa!

The Clouds Have Lifted

So I’ve been laying low for a while because I’ve wanted to talk about this but couldn’t until now.  Right before I went on vacation last month I found a lump in my neck that I was seriously concerned might be a recurrence oflymphoma or perhaps some new cancer.  After getting bumped and bounced and finally getting scanned, I am happy to report that it is not the case.

I’ve refrained from talking about it because I really wanted to not get too bent out of shape over what could potentially be nothing.  Granted I did break down a few times but now that I know it is nothing, I feel as though a tremendous weight has been lifted off of me.  I didn’t realize just how stressed out I was until I found myself calling the doctor’s office repeatedly, practically begging for the results.

So all is clear and I am in better shape than I have been in a decade.  In the words of Saul Tigh, thank the gods.   Its time to swing back into life.

A confession

I sometimes feel that I might seem a little irrational in my exuberance for the connected digital world. That may very well be so, but I think I have some pretty good reasons why. So in the grand old tradition of confessional blogging, I’m going to try and explain why my experience has lead me to my perspective.

I grew up in the small city of Hazleton, Pennsylvania. Hazleton is a small, dying coal city that is close to no large urban center and very isolated even from neighboring communities. Growing up, I was shy, quiet and very much an outsider. I came to be interested in things- music, art and the like that it took a *lot* of work just to maintain an awareness of in Hazleton. There were very few people who shared my interests, so I always felt like an outsider in my community.

In 1994 I moved to Pittsburgh to attend Pitt. All of my friends had gone to other schools (mostly Penn State Hazleton) but I had decided to head for a larger city. Most people feel Pittsburgh is small beans, but this city to me is everything I wanted in a big city with a lot of the smaller town feelings that I *did* like about Hazleton. When we got to school, the Web was in its infancy. But we had access to email, and almost immediately, I found a way to stay in touch with all of my friends. Phone calls and snail mail were basically out of the question, but we were still able to maintain close contact- something I truly believe was much more difficult only a few years before. To this day, my friends and I stay in touch over a distribution list- and while that list has grown with friends we’ve picked up a long the way, we are still as tight as ever. We see each other only a few times a year now, but the closeness is there.

So there’s that. But here’s the big one: In 1997 I was diagnosed with Non-Hodgkin’s B-Cell Lymphoma aka lymphatic cancer. I had to leave school and for the next year I was essentially stuck in my house as my immune system was destroyed and I lost all of my mobility (as well as my hair) due to a year long chemotherapy treatment. At that point, though I could leave the house, it was a huge health risk- and there were times where I nearly died due to infection. I was sick and tired, I could hardly clime my stairs, but what I could do was sit at my computer and talk to my friends. I could find out about the world of music that was going on, even though I might not get to see my favorite bands. Before 1994, finding rare music was extremely hard- you relied on magazines or a college friend to clue you in; but now, finding out about new music was as easy as browsing to a web site, or subscribing to distribution lists devoted to whatever you can imagine. Instant messaging appeared around that time, with the program ICQ, and suddenly I could talk to my friends in real time. I had all of my friends in my Dad’s office, waiting for me, whenever I was well enough to get out of bed.

So when I go out of my way to defend human relations in the digital realm, it is because my life would be vastly different without the internet. I know I would not be as fortunate as I am. Like we said in class yesterday, fundamentally these things aren’t changing our fundamental humanity- the way we communicate and interact and think and feel, but the method in which we engage in those things has changed. In my case, it was for the better.

Oh yeah, I should add that I don’t doubt for a minute that my idealism is in some way inherited from the utopian fantasy of Star Trek: The Next Generation. Sad, but true 🙂

Cancer years

I realized this morning that there is not a single day in my life that I do not think about my having had cancer. This is not to say it scares me- its just on my mind. Of course its time for my yearly scans and I have been avoiding them like I always do. What does it all mean? I just had to get that out.