A World Away

I wish this post could just be about what an amazing time we had in Florida on our Make-a-Wish trip this past week.

Because it really was wonderful, start to finish. From the stretch limo ride we got to the airport, to the warm welcome and homey accommodations at at Give Kids The World, where we stayed, to the fun of being at the theme parks (and the joy of never having to wait more than 5 minutes in line!) to the gift of just being able to relax and enjoy ourselves together as a family.

It was all so incredibly nice — such a carefree escape — after the challenges of these past 16 months, and the challenges still to come with Clio’s illness.

I wish this post could be about that and only that. And I think the next post will be. I’ll throw up a bunch of fun pictures with witty captions and anecdotes.

But before I do that, I need to get something off my chest.

And before I do that, I want to give you this very funny excerpt from the comedian Tig Notaro’s widely-lauded comedy set, performed right after she found out she had breast cancer and just weeks on the heels of 1.) Her mother dying 2.) Nearly dying of a C-diff infection herself and 3.) breaking up with her long-time partner.

After laying this all out she says:

“But you know what’s nice about all of this is that you can always rest assured that God never gives you more than you can handle. Never. Never. When you’ve had it, God goes, all right, that’s it.

I just keep picturing God going, you know what? I think she can take a little more.

And then the angels are standing back going, God, what are you doing? You are out of your mind.

And God was like, no, no, no. I really think she can handle this.

But why, God? Like, why? Why?

I don’t know. I just, you know. Just trust me on this.”

So, dear readers, I’m sure God knew exactly what s/he was doing when s/he gave my father lymphoma.

Yes, you read that right. My dad — who turned 70 on Halloween — now has cancer.

A few weeks ago he noticed that one of his legs was swollen. Then he started to have pain in his back and groin that quickly worsened. An ultrasound ruled out a blood clot in his leg, but a CT scan the next week showed that he had multiple swollen lymph nodes throughout his abdomen. And just shy of a week before we left for Florida, he was officially diagnosed with mantle cell non-Hodgkins lymphoma — one of the rarest and most difficult kinds of lymphomas to treat. Less than 4,000 people are diagnosed with it in the US each year.

Seriously, if you’re worried about being struck by lightning, I highly recommend that you don’t stand next to me in a thunderstorm.

Having a parent diagnosed with cancer doesn’t come with the same primal horror and fear that comes with having your child diagnosed with a life-threatening illness or condition. At least, it hasn’t for me.

Instead, it has come with worry, sadness, longing of a sort, and an abstract feeling of anger — abstract because I don’t have anyone or anything to direct it toward. I don’t believe that there’s any grand plan. I believe that it’s purely random and coincidental that I am now — as a friend put it — a “cancer sandwich.” But I’m pissed off to have such bad luck.

I’ve had some really tough moments over the past few weeks. When my dad was briefly hospitalized after they found blood clots in his lungs, I felt something close to panic — half worry for him and half flashback, I think, to those first days after Clio was diagnosed and hospitalized, when everything felt so sudden and so tenuous. (How could this be? How could everything change so quickly?)

A few days before we left for Florida, I went up to my parents’ house in Maine for a couple of days — going straight from an amazing send-off party at the company who sponsored our Make-a-Wish Trip, to the bus station. While I was at my parents’ house, I found it literally harder to breathe than usual. I felt steeped in sadness and worry. Every familiar object and photo in their home seemed to foreshadow loss. Meanwhile, my mind kept ramming up against the impossible fact that just a few weeks earlier I’d been there with the girls and my dad had taken us out on his little boat, and had been pushing the girls and my nephew on the swings in the yard. Active as usual, if maybe a little more fatigued. Then, he’s always been a napper.

I went with my parents to their big “next steps” meeting with the doctor, partly for moral support, partly because I am fluent in cancer and could help translate, and partly because hearing and asking questions about medical details, scouring the web for information, is a form of coping for me — has been throughout Clio’s illness. It makes me feel more in control — even though I know that ultimately I have almost no control at all.

I know that I have to preserve my emotional energy for Clio, and Alastair and Elsa as well, not to mention myself. A father is not the same as a daughter. My mother is and will continue to be his primary caregiver. But she needs help and support. Both of them do. And I want to give it to them, to the extent that I can.

My father made it very clear to me that we should enjoy, enjoy, enjoy our trip to Florida. Not worry about him while we were there. Just be in the moment and have fun. And we did. We really did.

And now we’re home.

I don’t do well with transitions. This is typical of people on the bipolar spectrum. Discontinuity throws our little brains off kilter. So going from the hyper-happy bubble of Disney World back into the real world would be rocky for me regardless. But coming back to my father being seriously ill is making it harder.

I’ll be OK, though. I know I will. I’m going to be gentle with myself. Ease back into reality slowly, to the extent that I can. And hold on (but not cling too desperately) to some of the joy of the past week.

My dad with his future cancer buddy, 5 years ago.