Set backs and strides forward

Last week was a tough pill to swallow- Elena had her very first set back of chemo due to her white blood cell counts being too low. Yes, I’m thankful she has been able to progress as she has thus far, but being so close to finishing treatment that I can taste it, and having to postpone and prolong just plain ole sucks! Part of it is just the living in the moment suckage, the other is knowing that after 8 months of intense chemotherapy, her immune system is shot and her counts aren’t going to be predictable, thus taking away the schedule we had set and leaving the last treatment date unknown. If only her immune system would keep up with her energy levels! The tumor is gone, cancer cells are no longer present and her hair is coming back in.  That’s what makes this difficult- knowing the cancer isn’t there but having to get these last treatments in and not having her immune system cooperating. 

**Le sigh**

I spoke with several people today about Elena and where we are at, and how she’s doing and it was so uplifting. I’ve been in this rut of knowing how much has changed in our lives and how this has changed me, that I haven’t focused on how little has changed for her. It’s business as usual, and for the most part, has been, since day one. We’ve had our bad days and a couple bad weeks stuck inpatient, but overall, we have been so ridiculously lucky in dealing with this. I need to remind myself of that more often. When I tell you that, on most days, if you came to my house and watched Elena and could ignore the fact that she only has peach fuzz for hair at 2 years old, you would NEVER know what she just went through. Not even remotely. 

One person told me today, as he has followed our “documentary” as he called it on Facebook throughout this past year, how inspirational we are, as a family, for dealing with this as we have. Another friend told me that she doesn’t know how I’ve done it- that she would be unable to function. Here is the truth: Elena is the inspiration. If she has no idea that she is sick, if she has been able to become accustomed to the needles and the “pukey” medicine, as we’ve named chemo, without batting an eye over it 24 hours later, than there is no other way to carry on besides business as usual. Yes, we have been stuck inside, staying in quarantine for most of cold and flu season, but to act any other way would just upset our children. And an even bigger truth: I’m not special. Not in some incredible inspiring way of overcoming this with flying colors. I’ve always described myself as a tough but emotionally sensitive person. Physically, it takes a lot to get tears from me. Emotionally, however, I cry over pretty much everything. And a year ago I would have never thought I could “get through” an experience like this. But really…what choice is there? When it’s your own child…you do whatever it takes. And if that just means getting up everyday and being a PARENT… No, that doesn’t make me super mom. It just makes me a mother who loves her daughter(s). Oh- I’ve cried, and screamed into my pillow and been filled with such rage and anger towards- I don’t know: cancer itself? And yes, God too. 

I remember our first trip to clinic, loathing that place with a tangible hatred. Watching the smiling nurses and doctors wanting to slap the grins off their faces. I didn’t want them to placate me with false happiness. I actually told her Onoclogist that her life sucks! No, I legit said that to the person in charge of saving her life. I mean, probably not my best moment, but I just couldn’t imagine a career in seeing innocent children sick.  She was taken aback, for sure, but responded with a small grin “I get to see them on the other side after we’ve beaten the cancer. Your life sucks more!”  Touché. She gained a lot of respect from me with that.  I listened to Elena’s fellow oncologist as she showed me her “road map,” the drugs and dosages she would be taking and when. There was an obscene amount of information that day and I scoffed when I was told I would be able to use this jargon, with complete and total understanding in a matter of weeks. I hung my head and thought “Great. I’m going to be the first mother ever that just straight up doesn’t get it.”  But I did, like we all do. Had it been me that was diagnosed, probably not. But my child…it’s second nature. 

Nowadays, we walk into clinic with smiles, waving to our favorite nurses and saying hi to everyone that Elena crosses paths with. On our short days (2-3 hours), Elena has to be coaxed into leaving because she’s too busy coloring or is in the middle of watching cat vines on YouTube. While this makes Elena the most amazing two year I’ve ever known and ever will know, it doesn’t make me all that special. It means I’ve accepted it, and only because I have to, and am doing what needs to be done. You would do the same. No, you really would. I promise you that. 

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