Earlier in that month in 2008 I'd taken my first (and still only) trip to Las Vegas with a good friend. We had such a good time. Lazing by the pool, playing slots all night, watching the dancing fountain at the Bellagio, and singing along loudly with the dueling pianists at New York, New York. It felt like being 27 and being on a fun trip.
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| I'd like a mulligan on my late 20's, post this picture. |
After I was diagnosed I didn't feel 27 anymore. I lost my hair. I felt tired and nauseous, not just sometimes but as a state of being. I was at the doctor's office multiple times a week. I had to take injections at home. I was 27 going on 70!
These days I've taken so many steroids I have osteopenia in my hip. I'm also getting a treatment that can cause cataracts if I don't wear sunglasses for 24 hours post-treatment. So now I'm 32 going on 90.
I won't tell you there haven't been loads of insights and life-changing/challenging moments; there have. I've put some things into perspective, prioritizing time with my friends, family, and especially my daughter. The things I stress out about are completely different now. Big successes might be walking up a flight of stairs or getting a clean PET scan. There's no doubt my life has been completely changed because of this cancer and my experiences these past five years.
But I have to tell you. I'm pretty sick of it. Five years is a long time to be sick. To worry about whether this disease is going to kill you before you can see your daughter graduate high school. To write (and revise) wills. To be tired *all the time*.
Being on disability and not having to work sounds like a reprieve to many, but let me assure you that while I do enjoy the time to read and crochet I also miss feeling truly productive. Having an income. Complaining about silly things like having to work late or not being allowed to make popcorn in the breakroom.
More than that I miss planning for the long-term future. Sure I catch myself daydreaming about it sometimes, but not with a financial plan or even with the knowledge that I'll be healthy or alive. I handle bills as best as I can from month to month, but who knows when I'll ever be out of the red.
All of this sounds like complaining, and some of it certainly is. I'm tired. Some of the stubborn will to just push through it all as if I'm not exhausted has faded. I sleep in and I take naps. But I'm also tired of the situation. I want to win not just another battle but the whole damn war. And I want it to be over.
And yet. There are other folks who were diagnosed with Hodgkin's lymphoma five years ago who aren't lucky enough to get to complain about being tired. People who received stem cell transplants in 2009 or 2012, who have succumbed to disease or GvH or some other complication. I may be tired, but I did get to see my daughter's sixth grade graduation. With any luck I'll get to see another graduation in 2019. Tired or not, that would be worth a lot of fight.
