Chapter 39: Uncharted Waters

Hello butterflies, nice to see you.

Thankfully, I’m not talking about the butterfly stroke. I retired from that 13 years ago. No more Friday Flyday for me ever! Instead the new catchy swim term in my life is #swimsdaywednesday. I swim on Wednesdays. This week my weekly swim will be on Friday (and no, it WON’T be flyday). I don’t usually swim on Fridays. But this week it’s for an extra special reason.

Until then, I’d love it if you’d please humor me by reading let another blog about yes, you guessed it, Swim Across America. I DID promise last year that I was going to be relentless in asking for support…even though I kind of cringe every time I do it.

So even though I’ve been politely asking (perhaps known to some as politely harassing)  for your kind and generous donations and support, I have a confession to make.

I still am not totally sure I’m swimming.

From late November 2016 until late June of this year, I was in a sandstorm of low energy. And I’m not just talking staying-up-too-late and partying-too-hard low energy. Trust me, that ship sailed in my life long, long ago. The short version of what I’m talking about is that cancer treatment is one of those cumulative things that doesn’t catch up to you until, well, it does. Cancer treatment gets a lot of press while you’re going through it, as it rightfully deserves. But not a lot of people talk about what happens afterward. You ring your bell (or if you’re like me, you ring no bell because your cancer center did not have such a bell and you don’t really care to ring one anyway) and you move on with your life. Cancer is gone, right? Bye Cancer! Don’t let the door hit you on the way out! Now let’s all pretend that never happened. 

But nobody can pretend that there’s not an aftermath. Maybe some people don’t get any side effects. I’d like to know who those people are and give them a hug and a pat on the back.

But for me and for most patients I’ve talked to, the part nobody really tells you about is how cancer recovery is, well, even more mysterious and unpredictable than the actual cancer treatment. It doesn’t just end when you ring or don’t ring the real or imaginary bell and receive your “I’m done with cancer treatment” diploma signed by your whole treatment team (though that was admittedly a nice touch).

Cancer recovery is one of those mythical and magical unicorn-only things that makes you feel AMAZING one day and then the next it makes you feel like you have no idea where the truck came from that ran you over and made you feel like your arms and legs weigh 4 million pounds and plastered you to the couch. And then there’s the scar tissue that forms in your chest, forming a spider web and rendering your chest wall muscles partially useless. In fairness, we kind of saw the scar tissue coming, but didn’t exactly know how and why and when and how much. Well now we know. It seems that the how is “with a vengeance” and the why is “because radiation fries all tissue, not just tumor tissue, and chemo makes your body systems get all funky long after it’s out of your body” and the when is “now” and the how much is “we still don’t know because this could go on for a while longer.” So at least for me, that’s how recovery goes in a nutshell.

So everyone (whoever “everyone” is) said that there would be fatigue and side effects. But everyone didn’t exactly give me a road map of what that would be like. Nobody gets a road map in cancer recovery, because everyone doesn’t know what exactly will happen, because nobody has a crystal ball. We all have to accept that, buckle our seatbelts, and enjoy the ride as best we can. Take it as it comes, and just handle it. Come to think of it I believe those are all general life rules that we all need to adopt, but I’ll save that for another blog.

So I’m not saying I expected or want a road map or crystal ball. Quite the contrary in fact. I DID kind of move on and forget about Benedict, knowing that I was moving into uncharted, uncertain territory in life. I mean, I would literally almost forget that I had to drink those nasty contrast drinks the night before my quarterly CT scans. Side note: back in June I was upgraded to every 4 months instead of every 3 months for scans, by the way. Hooray! Baby steps! I wasn’t going to sit around and twiddle my thumbs, wallowing in that uncharted territory and wait around for side effects to show up. But I also wasn’t going to ignore those side effects either. It was a delicate dance. So I moved forward focusing on the present moment and enjoying every little morsel of life–both good and bad–that was thrown at me.

Butttt—-there’s still that part of cancer treatment and recovery that nobody really talks about. Ok, so the treatment is done, and you’re all better right? Out of sight out of mind, right? Sure—in some ways that is a necessary part of recovery—putting it behind you and moving forward. But the aftermath is one of those unpredictable parts that nobody writes about in those nice handouts and pamphlets they give you at the oncology office.

And while “the aftermath” has been at times most unpleasant and I certainly didn’t invite it to come over and play, I’m also not at all ungrateful for the experience. Considering the alternative, I’ll take the aftermath any day. The fact I’m sitting here writing about the aftermath for what it was/is is something I’m extremely grateful about.

But anyway. While I had inklings of “the aftermath” whispering to me all along over the past 2ish years, the louder symptoms finally all hit me like a freight train in early March after our amazing vacation. I wasn’t surprised nor upset about it at all.

I won’t get into the nitty gritty details. I could probably list of every system in my body and tell you one or two things that wasn’t quite right about it. Some things were worse than others. At times I felt like I was chasing my tail trying to help myself. But at the end of the day, the answer was simple: Conserve energy. Harness power. Let go of unnecessary burdens.

These are things I’d been doing not just in health but in life for nearly 3 years. But of course–as life goes–just when you think you have it all figured out, there’s a new layer to unfold so you can see the depth of gorgeous possibilities hidden underneath.

So those were the general intentions I had to recover. But then there were the specifics. I didn’t exercise for 4 months. Not even a walk. Scratch that: I walk maybe 1/4 mile yards up the street and feel like I had just finished running marathon. I didn’t do any Pilates.I didn’t want to swim. I became a certified couch potato.

And I was more than happy to do that. Couch potato-ing plus ice cream is a welcome combo, let me tell you. In fact I still spend a lot of my days doing just that.

I was in it for the long haul and ready to let it take as long as it needed to take. I slept. I ate. I rested. I got a new puppy. Maybe I shouldn’t put “new puppy”  in the same paragraph as resting and conserving energy. But puppies are so good for the soul that the lack of sleep is worth it! And lo and behold my energy levels skyrocketed when Raven came to our house.  I scaled back on work, on outings, on everything. We got our groceries delivered. I hired an intern. I. Just. Said. No. To. A lot. Of. Things. Except these sweet little Raven eyes:

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And even though I was in it for the long haul, it really didn’t take long. Maybe it was the puppy. Or maybe it was the spending the past three years of saying no, conserving energy, and scaling back on all fronts. The money was in the bank, so to speak.

It paid off. Just 4 months later, starting in late June, I caught a little whisper coming from that place behind my slightly re-arranged and partially amputated breastbone. You know, that place. That whisper told me to get in the pool. Just splash around, have fun. It wasn’t for exercise. I just ached to get in the water and move. And move I did. Every time I chose to play it safe and stop while I was ahead before I got too tired. But then, that voice told me to try it again. Once a week. Week after week. And it felt even better each time.

Seems like something had changed in my body, heart, and mind for sure.

Then that voice whispered that I could gradually and carefully increase how far I was swimming. It felt like a fun science experiment. I did exactly enough each time, but not too much. I was cautiously optimistic that maybe—just maybe—I was really truly moving forward in the right direction. Swimming became my benchmark for improvement. Did I feel ok? How was my energy? How long did it take me to recover from an easy swim? All of these things continued to improve. But I was still (and still am) in a place where I’m not totally sure I’d be taking the leap to swim on event day.

However- at some point I did have to make a choice. Most people–myself included–can’t just show up to swim a mile in open water without a semi-rational attempt at minimal cardiovascular and endurance training. That would be neither prudent nor safe. In fact it would be about as crazy someone swimming a mile 5 and 18 weeks after 2 very major chest wall surgeries. I don’t know ANYONE who would do that. 😛

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So I may not swim. There are two competing, compelling deep voices whispering at me. One says “give it a try.” The other says “play it by ear.” And both of those voices hold the RIGHT answer. Two right answers. What an amazing win-win. If I continue to improve on energy on the path I’m taking, then by the time event day rolls around–I know I’ll be fine. If something changes or–imagine this–if I just don’t feel like doing it–I won’t. There’s nothing to prove.

While I’m a big fan of this summer’s blockbuster hit and all the gear I have to match it, this time there is no Wonder Woman garb. There is no “getting back at Benedict” story. As far as I know, there won’t be any surgeries between now and September 23 to “bounce back from.”

This is all about resilience, surrender, and love. This year my friend and teammate Caroline and I have pledged to only go out, have fun, and if we “race” it will only be a race to see who can get last place. Sounds like a winning strategy to me.

And if I’m on the sidelines, I’m completely ok with it too. That lake isn’t going anywhere. I am certain at this point I can swim a mile. But it doesn’t have to happen on any particular day.

These uncharted waters–I’m really enjoying being in them. Sometimes I can’t believe those words just came out of my mouth…err…well, out of my fingers. Who LIKES uncertainty? Who am I and what did I do with the Julie of yesteryear who had to KNOW, with CERTAINTY, exactly what the plan was? That feels so “meh” to me now. So boring. Where’s the adventure in that?

So we’ll see. I don’t know what I’ll feel like doing on September 23. Either way, one month from today I’ll be jumping in with 499 of my best friends and #makingwavestofightcancer in some way. I’ll either be a dedicated volunteer and cheerleader or a dedicated “whatever man, let’s just go have fun” swimmer.

One thing I DO hope to do is swim with the sharks on September 24. The first 12 participants who raise $3000 or more will be invited to snorkel with the whale sharks at the Georgia Aquarium. How cool is that? Unlike Michael Phelps and Shark Week, I’d be swimming alongside actual, non computer-generated sharks. As of today I am at $2828…just $172 away from that goal, and I’m in 6th place.

So if you haven’t already and are willing and able, I’d love your support to keep me swimming on event day and/or thereafter–and definitely with the whale sharks! My real inspiration is supporting the patients of the AFLAC Cancer at Blood Disorders Center at Children’s Healthcare of Atlanta, so that the only uncharted waters those kids ever have to venture into are “normal” kid life things, not those of cancer treatment and recovery.

Thank you, thank you, thank you 1 million billion times over!

Thanks to everyone who has supported, donated, and cheered me on so far! You’re keeping me going! I belong in the water. It’s my church. It’s the place where the world literally drowns out and all I can hear are the sounds of my own heartbeat, thoughts, inner voices (for better or worse) and of course, the water. It’s where ALL of my best ideas are born and inspiration comes paddling into my heart.



PS ICYMI: I passed my 2 year anniversary of cancer diagnosis just 10 days ago on August 13. Wham, bam. Take THAT Benedict.