Cancerversary

One year ago today, I brought Clio to the ER of our local hospital with a fever of 104.5. Several hours later, we found ourselves at a hospital in downtown Boston, being told that it was 99% certain she had leukemia.

As I posted a few weeks ago, it’s been difficult looking back at this time last year, when her symptoms were emerging and worsening, but when we had no idea that she was, basically, dying.

This past week has been even harder. Memories from the days before Clio’s diagnosis and the early weeks of her treatment have been resurfacing unbidden, and feeling quite raw.

It doesn’t help that many of the ordinary events of last year have repeated themselves this year:

Earlier this week, I was at my aunt’s house in Connecticut, where we’d been with our family the prior week last year. I sat on the couch with her, and we remembered how Clio had lain there crying at one point because her legs hurt so much. I’d massaged them, given her ice, given her Advil. (We saw our pediatrician for a second time two days later, and I demanded we be referred to a specialist.)

Also early this week, when it was hot, in the low 90s — I thought to myself, God, I hate the heat. Was it this hot last summer? And then I remember: I spent a large portion of last summer in an air conditioned hospital, hermetically sealed away from the weather, the world.

Thursday night, we went up the street to the same fireworks display, with the same friends, as we did last year (although last year I was actually up in Maine, doing a reading). Last year, Alastair had to leave with a screaming Clio because she suddenly got a huge hive on her leg. Hives were one of the mysterious symptoms that developed in the last week before she was diagnosed.

Today, the same “Family Fun Day” as last year is happening up the street — the one that Elsa went to but that Clio missed because she and I were at the ER waiting for her blood test and ultrasound results.

I’m remembering the first, awful, sleepless night in the hospital. Almost fainting when I got up to use the bathroom. Climbing into be next to Clio, briefly, then going back to my own bed because it was too painful.

I’m remembering the reverse nightmare feeling of waking up in the hospital the second morning — this time in the spartan little cell of a parent room we were given, while Alastair slept in Clio’s room, so I could get some rest. Waking up in that room, remembering the reality of where I was, and what was happening, is what I imagine it feels like to wake up on your first morning in jail. I cried, and I think I said aloud, I don’t want to be here.

I’m remembering holding Alastair when he finally broke down and cried, after we watched Clio go under sedation for an MRI.

I’m remembering the face of the surgeon — who bore a bit of a resemblance to Alastair, in fact — who put in Clio’s port-a-cath. He told us that he had a little girl who looked just like Clio. In the operating room, when I started to cry — right at the moment when Clio had gone fully under anesthesia, and it was time for me to go — I caught him looking at me and we made brief eye contact. (What was he thinking? Why was he looking? Was it because Clio looked like his little girl? Did I look like his wife? Didn’t most mothers — and fathers — cry?) The nurse put her arm around me and walked me out of the room.

I’m remembering the sensory overload of the times I wasn’t in the hospital with Clio over the summer — wandering, dazed through the crowded, colorful, strange-smelling chaos of the Chinatown neighborhood the hospital was in, over to Downtown Crossing and the perfume-scented, new-clothes quiet of Macy’s, where I bought extra underwear when I was running out.

I’m remembering the dawning realization over the next few weeks of how drastically our lives had changed, in just a matter of weeks.

But I’m trying also to remember some of the good stuff:  The way our friends and family and readers/listeners rallied for us. The nurses and doctors we came to trust and appreciate, and to have a pleasant rapport with. The sweetness of reading the Ramona books to Clio in her room, and listening to Alastair and her sing together. The enthusiasm and excitement of Elsa when she came to visit (riding the tricycles around the nurse’s station on the floor and “riding” the hospital bed with Clio were highlights). The junk food we enjoyed without guilt. The lullaby CD we put on at night as Clio fell asleep.

And I’m trying to be grateful for the fact that we’re here, now — a year out, almost halfway through Clio’s treatment, and feeling mostly hopeful. Oh yeah, and it’s official: We’re going to Disney World at some point in October. We’ll be staying at this insanely magical-for-kids-looking place. 

We’ve met wonderful people. We’ve gotten a mini-medical education. We’ve learned to be more flexible and resilient. We’ve had moments of deep pain and great joy.

Do I wish life hadn’t sent us on this journey crappy little boat trip? Well, yeah. Sure. But life goes on. And there’s been a lot of good to balance out the bad.

Thanks for coming along for the ride — and for the strength and support you’ve given our family.

 

AlastairAndGirlsFireworks


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22 Responses to “Cancerversary”

  1. El says:

    GKTW is amazing! It will make your trip even more spectacular! I am sorry you need to go through this, but glad you can see the good that balances the bad.

  2. Kathleen says:

    Thank you for sharing your journey so openly. We love you and continue to cheer you on!

  3. shannon brisson says:

    *S I G H* Seems a lifetime ago, and also, just like yesterday.

  4. Nancy G says:

    …such beautiful, powerful, honest writing… Sending lots of hope, happy thoughts and hugs for a speedy, healthy next year!

    • Juana says:

      congratulations, that is awesome news! i’ve rlecntey decided to go into social media for as a future career, so i’d love to hear your thoughts :) loving your outfit in these pics… that blazer!! looking so young-professional … love it!

  5. Danielle says:

    This made me cry. Such bittersweet memories. Peace and blessings to you and your family, and I certainly hope that the next year treats you well.

  6. Hang in there. This is so hard. I totally understand what you’re saying, in my own way. It’s a trauma, and you’re re-living it. Though it’s obviously not the same situation, I felt the same way when the first “anniversaries” of everything with Ellie started rolling around, remembering the anxiety of the end of my pregnancy, her scary birth, and the shitty weeks and months that followed. Her first birthday was an incredibly hard day.

    Anyways, I don’t say that to make any of this about me, only as a way to say I get what you mean. It’s been an unbelievably hard year for you guys. I’m just so glad that, while far from over, things are looking up.

  7. Kgp says:

    Beautiful post, Jane. I’m sorry for the journey you’re on but grateful that you have the strength and eloquence to share it so openly.

  8. Brenda says:

    Huge hugs to you from a fellow twin Momma – your candor and humor in the face of this nasty C word is helping more folks than you’ll ever know – sending you vibes of strength and support – and rallying for a successful second half of Clio’s treatment – Clio, you are a warrior! Keep up the great work showing this illness who’s boss!

  9. April says:

    What a beautiful post. Brought tears to my eyes.

    That place you get to stay at looks awesome! So magical!

  10. Sara says:

    Thanks so much for sharing your ups and downs along the way… I hope this next year brings many more highs than lows.

  11. Your posts always give me pause to think and make me realize that life is comprised of so much, both good and bad, but there is always much to be grateful for. Thank you. Sending more good days Clio’s and your family’s way & thinking of you here in Maine.

  12. Christine says:

    I can only hope your readers have been able to provide the comfort to your family we try to express.

  13. Lindsey says:

    Jane, your ability to always see what is beautiful even in the most horrifically painful and despair-filled moments (which of course I can’t imagine, and I’m not saying I can) is a powerful gift and I feel honored to be able to read your story. Thank you. xox

  14. Ewokmama says:

    You’re awesome, Jane. You’ve so clearly articulated what “cancerversary” is like. I’m so glad your family has that year behind you. And I hope it’s smoother sailing from here!

  15. Kris says:

    Jane, would you mind if I gave copies of this entry to the parents of some of my patients undergoing treatment for leukemia? I think it might be helpful for them to hear this perspective from a year out – you write so honestly and clearly.

    • Jane says:

      Not at all, Kris! I would be honored.

      • Jane says:

        And, you know, it *is* on the internets and all. So it’s yours for the taking. :-)

      • Jeison says:

        Google Books is win. Yes there certainly many thgins that can be improved, but it is also new technology. Being able to scan through books from the privacy of your home is FANTASTIC. Anyone who has done as much stack-diving as I have can appreciate having books available at clicking distance. A better way of organizing the books along conventional library methods would be a better way to do it, but the way google books points you in new directions and allows you to make your own book list is great. PLUS you can get a great list of different books on your topic, and if they arent available to browse then you can always cross reference with CONSULS or your local librarys search engine. Google Books wins.

  16. Gail Erdos says:

    Jane,
    Happy Cancerversary! I know it’s not silver or gold or even paper. I have lots of thoughts about what “substance” it is…think I’ve spent too much time in hospitals that I have these ideas!
    Can’t believe I’ve known you guys almost a year now! Lucky me!
    Xoxoxo

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