I have sat down to write a blog post almost every day this week. I have the drafts to prove it, sitting on my computer, languishing. I’m not sure what the hold up is here. Even now, I keep glancing at my phone, checking Facebook, recording calories in my calorie counter (lame, I know), playing online pictionary. I’m doing everything possible to avoid writing – an activity which usually brings me such peace and a sense of accomplishment. My brain is humming with activity, but, like my blog posts, I feel a bit like I’m languishing. Languish: To fail to make progress or be successful.
I’ll start with facts and if that’s all I can muster, then at least the facts are there. We were discharged a week ago after five days inpatient. It was actually a pretty painless admission – as painless as spending five days cooped up in the hospital with a two-year-old can be. Since we’ve been home, Elsa has emerged again from the fog of this last chemo cycle (Interim Maintenance II) and she has been delightful. That’s the word I always use to describe her when the chemo has finally leached out of her body – and it’s totally accurate. Once again, she let’s us know that there is a sweet, funny, smart little girl in there – stifled by eight months of chemo and clinic and pain. She’s still my Elsa, so she will always be a bit on the ornery side. And she’s still TWO years old – so pack a little more ornery in there. But, delightful? Delightful is totally accurate.
Oh! And another fact: We got some really great news on our clinic visit before last. I can’t believe it’s taken me so long to share this! Originally, I had always thought that the Maintenance phase of treatment would last two years from the day we started maintenance. I had calculated that we would be done April 2, 2014. Well, while Dr. Parikh was busying himself with spinal needles and sterile gloves and Jeannie was busy charting and double-checking chemo dosages, I mentioned that April 2014 off-treatment date. They both stopped for a moment and said, “No, No. She’s finished with treatment 2 years after the start of Interim Maintenance I. Didn’t we give you your off-treatment date?” Um. No!! Jeannie glanced at Elsa’s chart and handed us a little slip of paper:
October 10, 2013
October 10, 2013!!!!
October 10, 2013!!!!
That may seem like it’s still a long time away but it is seven months shorter than I had previously thought. Two fewer spinal taps. Seven fewer IV chemos. Approximately 238 fewer chemo pills at home. This is a BIG deal! Our life (really, MY life, in particular), is very much on hold until Elsa finishes all this nonsense. Every time I try to think of anything happening in my future, whether it be a career move, going back to school, having another baby (what!?), I stop myself. Just the thought of another inpatient admission (surely, we will have another one before treatment is finished) and all my personal dreams go out the window. I can’t hold a steady job when I’m needed 24 hours a day to push an IV pole. It doesn’t make sense to spend money on the grad school that I so desperately crave. Can you imagine having a tiny infant to take care of (not to mention TWO children to breastfeed) while living on the 8th floor of our hospital?
Please, please, don’t interpret this as my ignorance to the fact that I am L-U-C-K-Y beyond measure to be able to stay home with Elsa. I know, every day, that I’m lucky to spend this time with her. That being said, I’ve got some ants in my pants (who says that?) to make a life plan that includes just a little bit more for me and my soul.
I wrote most of all this yesterday (Sunday) but now it is Monday and I’ve got more news, however tedious it may be to hear about blood counts. We were scheduled to start maintenance today but Elsa’s counts were way too low. They sent us home to enjoy another week of chemo vacation. Thankfully, this doesn’t affect our OCTOBER 10, 2013 end date (every time I say that date in my head, it’s like I’m screaming). Just less chemo overall, and I’m pretty sure Elsa’s body is down with that plan. Her ANC is only 264, so we are back on house arrest. She needs to hit 750 before we can even think about maintenance. We spoke with another family at clinic whose little girl is now done with treatment and they confirmed that their daughter’s counts took three weeks of chemo vacation to recover enough to start maintenance. Dr. Parikh told me, “Nothing to worry about,” – so as much as I’d love to worry my ass off about it, I’m going to put some blinders on and take his advice.
There we go. Blog post done. Just a little less languishing on my part.