Life In the Fast Lane

I have not posted in almost 2 months. It’s a good thing because that means that nothing major has happened health wise. It has been a busy two months and I’m grateful that I am here to experience it all. After a women’s retreat at church, I’ve made new friends and joined a bible study. My oldest started soccer season and my younger two are ready to start Tball soon. I’m knee deep in Disney details as we finalize our FastPasses for our summer trip. In general, life is pretty great.

My two year anniversary of my transplant is coming up on APril 19. Not a huge deal but still a personal milestone. The big anniversaries are 1,3, and 5 years. The 1 year means you’ve survived the transplant process. 3 year means your chance of relapse drops dramatically and you are “out of the woods”. 5 year means you are basically “cured” or as close as you’ll get. Yet, this 2 year anniversary is a big deal to me because last year, or the year before, I certainly was not living life in the “fast lane”. I was hobbling along trying to keep up with life and often not succeeding due to medical problems. For the first time in years, I feel mostly normal.

Many issues still arise from the transplant process. For example, I’m currently dealing with my face breaking out like a teenager’s, my nails are extremely thin and brittle and my skin is extra dry. I’ve gained 12 pounds and am often cold. Sounds like thyroid right? Well, it could be. Still waiting to get more tests done. It could also be GVHD or menopause. I’m hoping for thyroid because that’s treatable. I also have severe vision and eye problems. Ok ok...maybe not severe. But I have these new sclera contacts that feel good when I wear them but they fog up and get cloudy which means I can’t see well sometimes and usually without notice. Without the contacts, it hurts every time I blink. So its not a perfect situation by any means but my eye specialists are working on it. There are options.

The thing is, before all of this leukemia happened, my world would’ve been falling apart if I thought I had a thyroid issue or my eyes weren’t seeing crystal clear. These days, I’m so happy just to be here that a thyroid issue or repeated trips to the eye doctor to find the best contact options are not a big deal. Well, ok, some days they are a big deal. It’s never just a quick trip to the doctor. It’s a day long adventure which requires a babysitter, at least 3 hours in the car driving to and from Loyola and another medical bill. But it’s not a hospital stay and it’s not a bone marrow biopsy. It’s just an inconvenience. Let’s be honest, I get annoyed and irritated that I have to be so high maintenance. Gone are the days of getting up and throwing on some clothes to run errands. Now its get up, take a whole lot of meds, pre-soak my contacts, get dressed, put contacts in, put a lot of stuff on my face, apply sunscreen, then makeup and wig. Then I may be able to leave the house but sometimes the contacts aren’t clear and I need to start that process over or sometimes my face is burning and I need to put take off makeup and start over with a different lotion under the makeup. Some days my joints ache because of GVHD and/or excessive dryness in my body. There are days when my energy level is so low that I need a LOT of coffee to get through the 8 hours until my husband returns home and helps with the kids. It’s a crap shoot each morning. Most days I’m just fine, but some days I just seem fine to the untrained eye. I’m excellent at “looking normal”. That’s the whole point of the wig and make up and contacts isn’t it? Don’t we all attempt to “look normal” when we leave the house? I mean, there’s always the ones who totally miss the mark...the ones who end up on the “People of Walmart” slideshows. But generally speaking, that’s what we girls all do...comb our hair, put on some make up and go. Even the guys make sure they don’t look homeless before they go out. I do the same thing, just with a lot more steps.
And when its all said and done, the contacts usually irritate my eyes by mid afternoon and come out. My wig starts to itch by evening and I’m back in a head scarf and my makeup has stopped hiding the acne and my skin is flakey again.

It sounds like I’m complaining. I guess I am. But nobody has a perfect life. Everyone has their struggles. I’m fortunate that my struggles at this time are not a big deal. Going to my son’s soccer game today was exhilarating because it was ordinary. I couldn’t have gone two years ago. Even one year ago, I may not have been up to it. Yesterday I hosted a Bible study. That required cleaning, baking, and inviting 9 women and three children into my home. None of that would’ve been possible 18 months ago. I didn’t have the energy to clean and bake and that many people coming over would’ve been too many germs. My immune system couldn’t have handled it. But this year, I can do those things! My perspective is so different. Yes, it hurts when I blink without my contacts in but at least I’m here to see my children...even though its blurry sometimes. Yes my skin is extremely sensitive but I’m here to feel the breeze on my face and the sunshine as I walk my boys to the bus each morning. Yes I’ve gained weight and am dangerously close to having to jump up a pants size (which I refuse to do so I best workout today!), but that means that my appetite has improved from a year ago when I hardly ate anything because I coudln’t taste anything.

So here I am. 12 days away from my 2 year transplant anniversary squinting to see the iPad screen because its a bad eye day and huddled up by the fireplace because my body is either freezing or very hot and doesn’t regulate well and today is a cold day and yet I’m so very happy to be in the same room as my boys as they watch a movie. And yes, that was a run on sentence. And this is a fragment. Nobody said I was a good writer.