Monday, June 29, 2015

The Grass Ain't Always Greener

This was my Time Hop today---



Now you may be thinking, “So what, looks like some random pictures of you hanging out with your son and nephew three years ago”.

Well, you’re right, that’s what those pictures are of. Talon wanted to have a sleepover so in true Mom/Aunt Dana fashion, I had the whole day planned—we went to Target, had dinner at Moe’s, walked over to the neighborhood firework spot, hung out outside alllllll night, then lit some fireworks (on a night that I’m pretty sure was a no fire-work night because of a recent drought but that’s beside the point). It was a fun night. It was a busy night. We didn’t stop until we went to bed, probably around midnight. It would be the last full night I’d ever have like that because the next morning, I would end up in the ER having my appendix removed, and hospitalized for the days following while the doctors tried to figure out what else was wrong with me—that I had cancer, Chronic Mylogeneous Leukemia, something I'd have for the rest of my hopefully very long life.

That was the last night I felt like me. It was the last time I could go non-stop all day long and never get tired. It was the last night I could eat whatever I wanted and not have to worry about how it would react with my body. It was the last night I wouldn’t have to drink water all day to ensure I didn’t get dehydrated. It was the last night that I felt ‘good’.

Since about two weeks after that night, I’ve been taking 9-12 pills daily. 4 of those pills are treatment—they control the leukemia. The others help with the side effects of those 4 pills.  If you’ve followed my journey than you know the side effects that come along with those medications—nausea, vomiting, extreme fatigue, bone pain, hair thinning, headaches, more nausea and fatigue, dehydration, food sensitivities and intolerances, and just overall not feeling good. And that’s been every day since. You can read more here. 

But for the last almost 2 months, I haven’t been taking any of my medications-- none, nada, zilch. And boy have I noticed a change. I’ve always assumed my sickness was coming from the side effects of the medications I was having to take to stay alive. In these last 2 months, I’ve really been able to tell just how much it has affected me.

My hair is thicker, I’m no longer nauseous, I’m not as sensitive or as intolerant to as many foods/drinks, I no longer have to revolve my day around making sure I prepare/eat a big enough meal at a certain time to prevent myself from later having to throw up and be miserable for the rest of the night. I’ve just felt better.

But here’s what I wasn’t expecting—even without taking those medications that constantly made me sick, I’m still don’t feel 100%. In my mind, it was always the meds that was making me sick and not the cancer and in those moments when I felt my worst, I always questioned whether quantity of life was more important than quality. Yes my meds keep me alive but if you can’t enjoy life is it worth it? Maybe I’d be better off not taking anything? But the cold hard truth I realized while being off my meds for the last couple of months—though the medications are a big blame, the cancer is to blame, too. Even though I do feel much better, I still battle with constant fatigue and dehydration. I can still barely get through a work day without having to lay down and rest. I still don’t have energy to swim or play bad mitten with Talon after work until after I take a nap. I still can’t get through a day at the baseball park without having to come home and lay down. I’m still just as, if not more, exhausted than ever before. And. It. Is. Frustrating. So frustrating, to the point where I’ve broke down and cried so many times. I just want to have energy. I just want to be able to do the normal things a normal person can do in a normal day. I just want to be able to do the things my son wants me to do without having to constantly explain to him why I have to rest.

That’s one thing I was looking forward to when I stopped taking my medications. I thought I would feel like me again, like the me that's pictured above. But what I’ve realized, that ‘me’ is long gone. I’ve realized the fatigue wasn’t just from my meds ‘killing the bad cells’ like I had always thought, but it’s also because the leukemia keeps me from having enough ‘good, healthy cells’. The ones you need to have energy. It’s because I’m not healthy, because I am sick.

Turns out, the grass isn't always greener on the other side. And while this might seem like a complaint or a pity party, I assure you it's not. I think maybe it's what I needed to help me accept that this is the new me, and there is not changing that, so I just have to deal with it. 


Confession:

Now you are probably wondering why I stopped taking my medicines. Well, my friends, that’s for another blog post for another day. 

 Don’t you love the suspense? :)



3 comments:

  1. Is it because you're pregnant???? :) :)

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  2. I'm so sorry you have so many side effects from your cancer. One of the symptoms of fibromyalgia (what I have) is chronic fatigue and exhaustion, and extreme body pain. It's so hard to realize that this is the new reality. We are still so young to have such awful symptoms! I love that you have such a positive spin on your cancer and you definitely inspire others that deal with their own medical conditions to keep pushing an fighting. You're doing great and you let your inner and outer beauty shine, which is so awesome. :-)

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  3. I also have CML. Do you ever post on the LLS CML page?

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