The Never Expected and Always Unthinkable

If you’ve been following me for a while, odds are good that you know the health crisis we’ve been through over the last year as my husband faced a scary pancreatic cancer diagnosis last spring. The kind of diagnosis you’re not supposed to get at 43.

It was awful. It was traumatic. And until this week, I’d kind of sort of managed to tuck it away in the deep recesses of my mind. Because let’s face it—you can’t think about this kind of thing every day or you’ll actually drive yourself out of your head with worry, the kind of worry that comes with anxious, nervous energy that keeps you up into the wee hours of the morning every night with no one but your miserable self to keep you company.

And then this week someone I know on Twitter (I can’t even call her a ‘friend’—we’ve never had a single personal conversation!), a Pitchwars mentor & writer whose debut book just came out this month, a woman who is living her dream—the same dream I have—just got word that her husband had been hit by a car and was in the ICU at the hospital. I don’t know the details. I know only what she has shared on Twitter.

But her story has hit me so hard this week. So hard. Because it seems like even when things are really good, they can still be really bad. Clarissa recently tweeted about how wonderful the doctors and nurses are, about how they’re making sure that she’s taking care of herself, too. And it brought the memories flooding back.

The day I couldn’t eat because I woke up with such severe anxiety three days after my husband’s surgery that my stomach had cramped into one big knot. The nurse on shift that day didn’t say anything right away, but by 3 p.m., she gave me a knowing expression with worried eyes that I swear could see right into my soul and she asked me, “Have you eaten anything today?” I hadn’t. I couldn’t. So when I finally managed to eat a banana at 7 p.m., I made sure to let her know. Nurses are amazing. They are incredible human beings who give so much more than I ever knew was humanly possible to give to perfect strangers.

And in one tweet, Clarissa sent me right back to those horrible moments after the big surgery, the ones I pushed aside for the last nine months. My heart goes out to Clarissa and her family. I know what she’s going through. I know the fear and the worry and the feeling that nothing will ever be the same—that your entire future is nothing more than one big question mark.

I hope that you’ll join me in supporting Clarissa Goenawan and her husband in the weeks and months of trials they’ll have ahead of them. The medical bills can add up so quickly that it takes your breath away when you stop to think about it. We spent over $10,000 in out-of-pocket medical expenses last year. Without insurance, it would have been well over $300,000. Life can turn on a dime and moments like these are sharp reminders to hold our loved ones tight and appreciate all we have been given.

Screen Shot 2018-03-24 at 8.19.19 PMMany prayers for Clarissa and Choo and for a quick and complete recovery and a return to normal life.

And if you want to support a debut author in another most appreciated way, pick up a copy of her book, Rainbirds, released March 6th of this year.

 

Falling Down

It’s Saturday. More specifically, it’s the Saturday after Thanksgiving. I’m supposed to be happy. We are full-fledged into the Christmas season. I should be baking Christmas cookies (and eating half of them) while my husband strings the lights outside and I watch from the warmth of our living room. The kids should be bouncing off the walls and playing Christmas music. Instead, we’re doing nothing we should be doing and it hardly feels like Christmas at all.

In fact, Thanksgiving, with the exception that we got to spend it with my family and my mom made another fabulous meal for the books, pretty much sucked. Older child had the stomach virus two weeks ago and now quite suddenly has severe panic attacks (most likely due to her father’s prolonged physical illness whether she recognizes it or not). She couldn’t enjoy Thanksgiving dinner and didn’t even manage a bite of dessert. Younger child had lice three weeks ago (that was fun) and we’re still vigilant with our checks to make sure we’ve taken care of the issue. And husband now seems to have a stomach virus on top of all else. It’s 11 a.m. and he’s still sleeping. My guess is that he was up all night. I couldn’t tell you for sure because older daughter has taken his place in our bed the last three nights so that I could make sure she got real sleep.

I have so much to be thankful for, but it’s really difficult to remember when everything around you seems to be falling apart, falling down.

Falling Down. I might be showing my age here, but remember that Michael Douglas movie from the early 1990’s? The main character essentially has a nervous breakdown and starts randomly killing people before ultimately taking his own life. I was 15 or 16 when I watched it with my brother on t.v. one night and I remember being utterly disenchanted. I had just wasted two hours of my life to watch a guy go crazy and shoot people up before killing himself? What was this crap? What was the point?

falling-down

Let me just say: I get it.

I get it. I get it. I get it. (No, no need to call anyone to have me psychiatrically examined. I won’t take that route.)

Watching the outside world tank over the last couple of years has been depressing enough and being part of the #resistance movement has been taxing (especially as a major introvert who just wants a blanket and a good book, dammit!), but when you’ve got life also screwing you over on a personal level at the same time, it’s almost too much to take.

Remember when I thought seven weeks with a drain tube was a long time? Well, my husband has had one in for 19 now. His next appointment is December 7th, so that will bring our total to at least 21 weeks. Short-term disability runs out on December 2nd. He’s trying to figure out if he is able to go back to work, even with his drain in, and I’m not sure he’s at that point yet. His sleep is miserable (as a result, cognitive function isn’t always top-notch), he’s frequently in pain, and he’s irritable (which might not be the best state for the customer-service aspects of his job). We were supposed to talk it over last night, but talking it over wasn’t a possibility when he ended up battling a stomach virus all night, because a tube in his abdomen apparently wasn’t enough misery. Because he needed another hurdle.

Because apparently the universe isn’t done throwing shit at us yet. I keep wondering how much more it could possibly have in store, but I’ve learned it’s not good to ask the question aloud.

Despite it all, I am still thankful. I am. I am thankful for medicine, for incredible doctors who have brought us through the most difficult times and quite literally saved his life. I’m thankful that, by some miracle, we managed to discover the cancer early. I’m thankful for others’ stories who help us get through. I’m thankful for friends, old and new, who continue to offer support of every kind. I’m thankful that he didn’t need to follow his surgery with radiation or chemotherapy. I’m thankful that a miserable drain tube can prevent the need for another surgery.

I am thankful. And nothing the universe throws at me will ever change that.

pancreatic symposium
He’s in the third row, second one in from the left. Two thumbs up because even with a drain still in, he attended the 12th Annual Pancreatic Symposium at Thomas Jefferson.

Fresh Paint

Egads, has it really been over three weeks since my last blog post? How does time slip away so quickly? (Also, who actually says egads?)

Oh, let me count the ways…

  1. We had more hospital time recently. After his initial surgery, my husband ended up with an infection which necessitated a drain. “Drains are great fun,” said no one ever! It’s been an issue on and off for seven weeks. Read that again. He’s had a drain in his body for seven weeks. Seven. (And we were told at the beginning that it would be two weeks and gone.) Complications made it necessary to change drains repeatedly and we’ve been back and forth to Philadelphia six times since mid-July to keep tabs on the progress. Supposedly, we’re looking at having the drain removed next week, but I’m still waiting for someone to rip the rug out from beneath our feet once again. It seems to be par for the course.
  2. Remember my post about PitchWars—the contest that’s kind of like The Voice for writers? I didn’t get in. This is no surprise to me as there were nearly 3,000 writers vying for mentee positions and only 150 mentors. (I’ll let you do the math on that one.) While disappointing because PitchWars would have been a great opportunity to get extra eyes on my manuscript, not getting chosen as a mentee hasn’t deterred me in the least. I’ll keep querying this manuscript (as I have for the last couple of years) while I revise my most recently finished manuscript and work on my newest WIP. It’s all part of the job.
  3. Critique Partners. While I didn’t get into PitchWars to get mentor eyes on my manuscript, I did manage to hook up with hundreds of other amazing writers. I now have not one, not two, but three new possible critique partners. (That’s a lot of reading!) Right now, we’re in that crazy “first date” stage. We’ve exchanged first chapters and are determining our compatibility as critique partners. In a CP, it’s really important to find someone who recognizes the flaws in your writing, but who also recognizes the potential. You want someone who will cheer you on while also letting you know why a particular paragraph isn’t working or a character isn’t reacting the way it seems they logically should. Furthermore, it’s a must to have a critique partner who actually enjoys your writing and doesn’t feel it’s a chore to read your work. But perhaps most importantly, you want someone who is encouraging in every way. The last thing a writer needs is someone who will pull them down and stomp on their heart. (Really. Writers do enough of that to themselves.)
  4. School. School has been so quickly approaching that it’s taken everything I’ve got not to fight against it. I’m going to refer to the last three months as The Summer That Never Was. Because that’s how it feels. Between the rollercoaster of medical visits the past four months, all of our summer plans went out the window. (2018 had better make it up to us!) And so this last month I’ve been busy preparing for the kids to go back to school. School supply and clothing shopping completed, my kids were ready and excited for their first week back. So far, so good. (We’re three days in and no one has complained yet, but give it time. I’m betting they will by next Tuesday.)

Anyway, my point with all of this ramble? Life gets in the way. The unexpected (which really should be expected at this point) has kept me from doing the things I thought I would be doing throughout this summer.

IMG_1801And that brings me to a new point (and, consequently, the title of this post). Fresh paint. I first saw this sign when my husband was just out of his initial surgery and was being moved from the Surgical ICU wing to a regular hospital room. Six weeks later, when we came back for an emergency visit and ended up admitted because of an abscess, guess what sign was still there? Two weeks after that, when we came back because the drain had stopped working, he was in extreme pain from the abscess, and had a fever once again, it was still hanging. Three days later, and then another two weeks later still, it was there. I’d bet money that when we visit next week, that sign will still be in the same place on the same door at the end of the same hall we’ve been seeing all summer long.

Fresh paint. I’m fairly certain that the new coat of ‘fresh’ paint dried long ago. (I wonder how long the sign was up before our first visit.) The last time I saw that sign, I laughed. Somehow, in some obscure way, that sign is a metaphor for my life at this moment. That sign is the universe speaking directly to me.

There are times when it’s necessary to take on new challenges under new circumstances. And after you’ve done so, you’ll need to refrain from ‘touching’ no matter how much you want to. You’ll have to ride it out until that paint is dry. But just as importantly, you need to know when the paint is dry and learn to take control again. Otherwise, you could spend your whole life waiting for someone to tell you when it’s okay to start ‘touching’ again.

Or something like that.

Next week. Next week we go back to the hospital again. And dammit, that paint had better be dry because it’s time to start moving forward.

A Beautiful Sight

I watched the sunrise with my best friend yesterday. From the thirteenth floor, caged balcony of a Philadelphia hospital, we braved the early morning chill and watched the sun slowly bathe the buildings around us in a golden glow that made even Philadelphia look almost serene. (Almost.)

A Bryce Canyon sunrise, it _MG_7925-Edit-Editwas not, but it was still one of the most beautiful and one of the most stirring sights I’ve seen to date. I stood on that concrete precipice with the man who not 48 hours before was in excruciating pain and couldn’t have even thought about leaving a bed. And yet, yesterday morning he was up and walking the hallway at 4 a.m. and sparring good-naturedly with the nurses.

He’s back. My best friend is back.

We’re looking forward to his being discharged (probably tomorrow) and I couldn’t be happier that this entire experience will soon be nothing more than the faint echo of a memory. I wish I could say this memory will be as cherished as those from our cross-country trip two years ago (it won’t be), or that this endeavor was as enjoyable (it wasn’t). When we traveled the country together for three weeks, I learned a lot about us and about our relationship. It was as strong as I’d always thought and we’re better than just a husband and a wife. We’re best friends. This experience, though a polar opposite to our travels, served to reinforce that. My husband is, and always will be, my very best friend through thick and thin.

To those of you who have been following, and to the many people who reached out to me during this time, I can’t thank you enough. There are no adequate words to express how much your support means to us, how great your friendship is, and how much we love all of you in return. It is entirely true that you cannot ever realize the true extent of how much you are loved until you have to rely on the people around you. Our “people” truly shine. Thank you friends, family, and every kind stranger who has reached out. The world needs more of you.

Life Lessons in Patience

It should be me.

That’s all I can think as I sit in this hospital room, watching my husband snore softly as he recovers from an invasive surgery that left him with no spleen, no gallbladder, lost lymph nodes, and half a pancreas.

Why would I think this?

Because I’m the one who always imagines every scenario. I’m the one who always thinks the worst, even when there’s no evidence that the worst is actually going to occur. I’m the one who has imagined every pain, every injury, and every possible way to die. One might say I just like to be prepared, but the truth is that I wasn’t prepared for it to happen to someone else, to someone I love.

That’s not to say that I think about this stuff often. I don’t. But I guess you could say I think about it more than most. I live in my head a million lives I’ve never lived out loud. I imagine that’s the case for most avid readers and writers.

My husband isn’t like that, though. He’s my superhero. He lives for the moment—each and every moment, and to see him reduced to lying in agony on a hospital bed, exhausted from the pain, the common complications, and lack of sleep is both heartbreaking and gut-wrenching. He’s always so sure of things. He’s always so positive.

I have faith that I’ll see the man I know again and probably soon, but at this particular moment, “soon” feels like forever.

But this, too, shall pass. I am a student and the lesson is patience.