Honeymoon 2009

During my 20’s, if you had told me that a romantic evening would look like me dressed as the Michelin tire man in layers of flannel and fleece, highlighted by (yet another) night at home and (yet another) movie rented, I would have been absolutely terrified of the future that lay ahead.

Thank God, life comes in stages; harsh blows are countered by breezy moments.

Anybody else with me? I am in my early 40’s and suspect that most of my peers have met tragedy by this point be it through loss the of a loved one, marital problems, aching for your child, or your own physical battle. It all hurts, it all takes courage. It all requires so much more from us than we ever imagined life would demand back when we lounged on the beach during PTH (Prime Tanning Hours), reapplied tanning oil (yes, we used tanning oil back then),  flipped through magazines and dreamed of our future lives.

 So last Friday evening when my husband, my layers of fleece, and I stumbled into a romantic evening after months of illness and sadness it was unexpected and looked far from glamorous. But we had a blast. Hubby  grilled filets which I was able to eat and enjoy (without tummy pain). We even lit candles. We talked about the future, about trips we want to take; I daresay that we dreamed and every couple needs to have dreamy conversations.

After supper we watched Gone Girl. Without giving anything away, I will say that I had heard it was a great movie however I did not know the plot. Oh…My…Gosh… please check the plot; it is a story line that will be fine with some people but not with others. If you have seen it, you know exactly why I am saying that.

Throughout the evening, I kept touching my hand to my cheek because my face felt so cool and void of fever. It was the first time that I really “felt better”, like significantly better, in months.

I remember when that happened in 2007, when I was on Gleevec. It was during the middle of the night. I was asleep and must have rolled over or moved and my hand landed on my forehead; I woke up because my forehead felt cool. I did not have a fever. I remember a rush of happiness, and a desire to live; a knowing that the chemo was working. And because I suddenly felt better, I really wanted to live again, I had forgotten how good it felt to be alive…

That is how I felt last weekend.

When you are sick, you forget how good it feels to not hurt, to not be sick. When you start to feel better, you are overwhelmed with the clarity of how badly you have felt and how good it feels to get well.

You want to live again and you realize that you did not know your drive to live had dampened.

 Sunday was a happy day and one that was marked by progress.

It was Superbowl Sunday and I wanted to try and create a festive environment. It was my second time to drive in 6 weeks. My first drive had been to the hospital (which, honestly, was not a fun drive or destination). Sunday’s drive was to Whole Foods. I had not driven to Whole Foods or any happy place since November. The day was peppered with defining moments of re-entry into life.

 I posted a picture of myself (a “selfie”) on Facebook and Instagram . The picture triggered (of course) different responses. And that is ok, I put it out there.

For the most part, my friends rallied and recognized that I am trying to figure out how to re-join life after a dark time. I did get messages concerning my weight. And yes, I am eating.

I actually look so much better than I have looked. Over the past few months, I have given you glimpses into our lives through my blog. However, privately it has been so much worse.

I lost almost 20 pounds in 6 weeks and I did not need to lose weight to begin with. That is what a chron’s flare, leukemia and a new chemotherapy will do to you. I look pretty beat up and I am fully aware of it, but I am starting to look alive again, and that is so exciting.

getting better

Not the best…but getting better…

There was one moment at Whole Foods which threatened to burst my happy bubble. A young child reached for me and gleefully yelled “Grand-mommy!” (yes, you can laugh).  His parents looked mortified and I looked confused. Then his mother told him that just because I look like his grandmother, he can’t call me that because he does not know me.

The part that made my heart sting: his parents were, at most, 7 years younger than I am. It was an abrupt reminder of the brutal beating that illness and treatment have taken on me recently.

In honesty, I wanted to get out of the store, get back to the safety of my home. I wanted to cry and I felt silly for going out in public looking so beaten down.

But it was a feel good day and I did not want it to stop. So I smiled, swallowed hard and decided that I absolutely would not allow that moment to crush my spirit.

When I got home, I cooked some AIP (autoimmune paleo) chicken wings and sweet potato fries. The recipe was easy to follow, yummy and I love to cook, which meant that my feel good day was ending on a stellar note. After cooking, I pretty much collapsed and went to bed early. But hey! I did a lot, and I felt alive.

This week was rough. Especially Tuesday and Wednesday. Ironically, Tuesday morning one of my friends asked me how I am doing to which I responded that I am 75% back; that day turned out to be the hardest day I have had in a while.

Once again: I was reminded that healing is a slow progression from “bad” days to “good” days with the goal of more positive days than negative. And I am getting there, but it really is baby steps.

“Healing takes courage, and we all have courage, even if we have to dig a little to find it” — Tori Amos

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