Monday, May 20, 2013

Things I love, am sick of, and miss

Park City, Utah is one of my favorite places on the planet.

Last week, my friend and I went to Park City for an overnighter. It was heavenly. Just the two of us, no kids, pure peace and relaxation. It was a spectacularly beautiful day. The resort hotel was at the foot of The Canyons. We laid out at the pool. I read a magazine. We got fresh vitamin D and mountain air. We saw The Great Gatsby, which is also one of my favorite novels. We ate great food. And I felt very fortunate to have the flexibility to do something like that-- just take off midweek for some adult time.

Fighting Multiple Myeloma is a really long, tough process. Carol, my coordinator at Huntsman (where I am treated), told me that treating MM isn't the most painful or invasive, but it is one of the most time intensive and time consuming. She said: "Your treatment is now your fulltime job. If you look at it that way, it won't seem as bad." True. And I'm so tired of it!

So today I'm pondering the few good things that have resulted from my disease, things I'm completely sick of, and things I miss the most. Here goes:

Good Things
  • Flexibility: I have flexibility to work around my treatments and the days I think I'll be feeling the crappiest, and schedule time for me. Once the girls are home from school, I'm incredibly busy, but when they're at school, I can call the shots. I've never been able to do that. I've always worked or gone to school and worked. The flexibility is nice.
  • Time: Time to really get to know my children and my parents without feeling rushed all the time. I get to live in the moment. Granted, I'm still incredibly busy, but it's a busy that's more focused on others and of my own choosing.
  • The girls: Ok, so I've completely overscheduled them but it's nice to sign them up for activities based on what they want to do, rather than what my job will enable me to do. This means that they're in all kinds of positive activities, like dance, tumbling, choir, soccer, art and so much more.
  • My health: I don't really have a choice here but I really am trying to focus on my whole health. This includes meditation time, yoga, power walks, massage, journaling, proper sleep and (mostly) good nutrition. I think about my health every waking moment. This actually gets exhausting but I'll still keep it in the "good things" column.
  • Me: I've just become a better person. I focus on being kind and honest and good. I treat people how I want to be treated. I am as helpful and thoughtful as I can be. I pray a lot and I know God is listening. I'm becoming more the person I want to be, rather than reactionary to my environment.
I am sick of...
  • Hearing the words Multiple Myeloma
  • Needles
  • Thalidomide
  • Velcade
  • Dexamethasone
  • "The fuzzies"
  • Rib/torso pain and/or tightness
  • Exhaustion/fatigue
  • Having to worry about Every.Little.Thing when it comes to my health. "Oh, I feel a pain in my back. Is that a tumor?" or "Uh oh, I have a 100-degree temp. Time to rush to the ER!" Nothing, even something incredibly minor, can be ignored and I am paranoid about everything.
  • Planning my days around when I think my velcade/dex side effects will kick in
  • Admitting my physical limitations. I see people running outside and I really miss it. I want to go for a run, to train for a race, but I can't. Then I remind myself that I run a marathon every day (figuratively). I am a physical rock star if you understand how hard treatment is. I work through it, I keep going, and somehow/somewhere, I find the strength to survive my illness every single day. That's pretty amazing. And it can be really super hard. 
Things I miss:
  • Feeling healthy and having no physical limitations
  • My hair
  • Feeling like a grownup. Living with my parents is humbling.
  • Independence. I can't do my life alone. I need help, I need support, I need caregivers. Admitting this and letting others help me has been incredibly humbling.
  • Working. Sort of. Ok, not really! I was always defined by my career. Not anymore!
  • Having my own home
  • My dogs. Bob the Great got rid of them after I left. If there's no wife to care for animals, well, he's not going to do it. I don't even know what he did with them. Sick.
  • My children not having a dad. I'll post a blog all about what a horrible "man" Bob has been to them. Inexcusable and pathetic but we'll talk about that another time
  • San Diego
  • Julie and Shane
  • Kalie - But we get to see her in July. Whoohoo!!
  • Peggy