Disclosure: In case the title didn't give it away, this is a long, rambling assembly of thoughts and feelings. You've been warned.
Limbo - it feels like floating sometimes. Days run into each other, morning turns into night without much to report. In this limbo there is too much time to wonder, project, feel and hope for. There is the constant need to remind myself that this journey is long, twisted, and requires me to take it one step at a time. There is too much time to hear about other stories, other journeys, some with the outcome I hope for, some not so much. And thus, there is much time to worry if I let myself feel that. For the most part, I refuse to.
On the other hand, in this limbo I also project - I plan for the future, for when this is behind me, for the things I want to do, like a trip to France with good friends, going back to Hawai'i and visit turtles, taking a cruise for our 25th anniversary, celebrate three years of birthdays that didn't get properly celebrated (it will be epic!), and so forth.
I also have to think of the possibility, because there is always one, that I may find the end of my journey sooner than expected. And those moments are driven by motherhood. My two girls. If I were to not be here, what do I need to tell them that can't be left unsaid? I remember the hospital days when I was so weak and out of it fighting c diff, and thinking I should've written letters for them, letters I wouldn't get to write in my weakened condition, things I wouldn't get to say if things didn't turn around - and that was a very close reality I'd rather not go through again.
So I find myself starting these letters, which take me to projecting where I don't want to, getting into a funk, and pulling myself out of it. I have my girls here this summer and plan to enjoy that, and maybe here and there give them some pearls of wisdom, and here and there find the time and emotional fortitude to get through letters I hope won't be needed, letters that can stay unopened for years to come.
In this limbo, I'm also learning to adjust expectations. I think the fact that I am tolerating chemo and treatment so well has led me to believe that everything will be achieved in the same vein (ok, I'm also an overachiever) - so I should achieve full remission after this last treatment, which wasn't the case. I should then have a couple of weeks to recover, a "mini vacation", which won't come. So, after a brief moment of disappointment and tears, I refocused on the important and positive news. I am responding to treatment. I am in good shape to move forward. Going into the next round of treatment will get me there and give me the best starting point for a successful transplant.
I told my doctor he needed pom-poms as head cheerleader. He was so good, so clear that I'm doing really well, so positive that I'm on the right track. I am so blessed to have a good team, to be responding well, to be at home with my family and eating my own meals. I have no right to complain, and I have every reason to continue to be grateful for the blessings, for each new day, for the ongoing prayers and support that come from so many, for the frequent signs I find along the way through which God reminds me He is by my side every step of the way.
I feel well, I'm getting stronger, I'm gaining weight (in a good way), and I'm also getting hot flashes. How's that for a segue? Yes, hot flashes! Every woman's dream... the bad kind. Hormones are so underrated. When you stop producing them, you figure that out. Hot flashes that sent me into the fridge the other day, only to find out that doesn't really work. And moods... my husband's road to holiness comes from putting up with a bitchy, unreasonable wife more often than either one of us bargained for. Though my job is to help him get to heaven, this is probably not how we envisioned that journey.
And let's not forget the unspoken truth of growing facial hair that wasn't there before. This is adding insult to injury. Dermaplaning might be promoted for "peach fuzz", but let me tell you it's excellent for not-so-subtle facial hair. Calling it a beard would be hyperbole, though sometimes it feels like it. Gratefully, my eyes aren't as sharp as they used to be. Sadly, my children have eyes like hawks and find it incredibly funny.
The journey started with a dramatic "BAM!" and has eased into what I only hope isn't the eye of the storm. I know times to come will be harder, as I continue to climb this very steep mountain. My eyes remain on my feet, one step at a time - I might be a coward after all, with a bit of hiding my head in the sand. At the same time, though it sounds like a contradiction, I keep the chin up, because as I've come to say, you can't fight if you're not looking at the enemy straight in the eye.
I keep fighting, I keep praying, and I keep keeping on. Thank you for the prayers, good vibes, positive thoughts, support and love. I will never find the words to adequately express what it all means to me and how it propels me forward.
