Well, I haven't been updating my blog regularly, and I apologize for that. I returned to work in September so my time is no longer a series of empty days that all blend together, and I've had trouble finding time and inspiration. There's a lot I could discuss, but basically, I've rejoined society, doing the shirt-and-tie gig, with plans to go to grad school in the fall. My health is much better, but not 100% -- it seems for every milestone I reach, there is another challenge thrown my way. Two steps forward, one step back, or is it the other way around....
In January I had my 18-month post-transplant scan, which showed I am still in remission. It also showed the early signs of avascular necrosis of the hip (aka, bone death) caused by the steroids I'm on which are the bane of my existence. Sometimes I feel like my life is the lyrics to a Carcass song. My chronic graft versus host disease has started to affect the tissue in my joints greatly decreasing my flexibility. This was determined after I failed to pass the "prayer test" (putting your palms together against your chest and raising your elbows), which I guess makes sense because God was never in my plans anyway.
That aside, I'm doing well. I'm succeeding at my job, starting a career, and all that. I'm recently engaged, have a little nugget of a dog, and other things that make me happy and I shouldn't take for granted. But even with all the things that go right and the good things I have, I still get overwhelmed, worried, and angry. But I have to put on a face and that is something I hate. The troubling thing about cancer is that you want to maintain your privacy, but you also want people around you to realize a little bit of the hell you're going through. And even though I'm in remission, and things are getting back to normal, there are many times where I feel like I am in hell. There are many days where I am well-dressed and put together, but if you were to untie my tie, my head would fall off like the girl in that old scary story.
If human beings could have punctuation marks attached to them, I would want an asterisk following me around. Because however I appear, whatever I say, whether I'm laughing and smiling or looking serious, there are things that I don't express, things my demeanor might omit. This asterisk has been following me since before my diagnosis (It's a fatty tumor,* Your scan is clear,* Your scan is still clear*), so why not just fasten one to myself so everybody who sees me will consider that there is more than meets the eye. But I guess everyone has their own asterisks, right?
Till next time....
Hi Harry, you probably don't remember me much, I was either very quiet or very stoned back in high school but we did go to Nauset together. I'm reaching out because I was just diagnosed with stage 2 Hodgkin's lymphoma. I too am 29. I'm married, have a beautiful little 1 year old daughter and am now facing this shitty disease just as you are. I can totally relate to what you're saying. My asterisk would come with a caption: *subject to change at any given moment.
ReplyDeleteI'm sitting writing to you as I'm getting my first of many chemo treatments. It's not always easy talking to people who haven't "been there" so I imagine the other side of this it looks different too.
This disease can be isolating at times, but it doesn't have to be so know that if you feel like chatting, blowing off some steam or none of the above, know that you're not alone. Cheers. #fuckcancer
Hi Angie,
DeleteI do remember you. Nothing wrong with being stoned or quiet back then....Not much about high school is worth remembering!
Aimee contacted me earlier and I received your friend request on Facebook. I am sorry to hear about your diagnosis, but it seems like you have a great attitude. That will make a world of difference. And I see that you've started doing some writing, that helps a lot too. I wish I had started blogging or kept a journal when I was first diagnosed (October 2011), because there are so many feelings, situations and events that I wish I had a better recollection of. And a lot of what can be frustrating, difficult and upsetting, I look back on now and realize there was some goodness and some humor to be found as well.
I appreciate your reaching out to me. And I want you to know, it goes both ways -- any time you have any questions, concerns, or you just want to vent or unload about this stuff, please feel free to hit me up. You can shoot me a message on Facebook any time. There will be times when you need to get something off your chest but you don't want to burden your loved ones.
I wish you the best and please keep in touch! You will kick its ass and come out of this stronger than ever.
Harry
Thanks, that's really cool. I've never been much of a writer but since I've started, it's opened me up in a lot of different ways. I feel like it is definitely good to get stuff off your chest, and as much as i appreciate people telling me to "be strong" ... Sometimes I don't want to. Sometimes I just want to hide under my covers and not do anything. And that's okay too. There's definitely no rule book on how to deal with having cancer. Sometimes you just have to roll with it. I'll definitely keep in touch. Connecting to people who have been through it or are going through it really inspires me and keeps me grounded. So until we speak again, be well
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