Tuesday, January 29, 2013

Gimme a Break!

Because waiting for scan results didn't cause quite enough stress for us over the past couple of weeks, we decided to also list our house for sale and put an offer on another house last Tuesday. And the universe is hilarious because - yay! We sold our house! For full price! In only 5 days! Now I can stop trailing Quinn and our cats with a vacuum and a bottle of Windex.

But then we were outbid on my our dream home by a full cash buyer who paid $20,000 over asking price, so we're still looking for a place large enough to house all of Quinn's toys. Even after we donated all of his baby gear, his birthday in March is going to seriously test our storage capacities. You hear that, Uncle A? We're all set on dancing Elmo's!

We have until the end of March until we're homeless, so - you know - plenty of time.

And I got a clean scan! But then I slipped on our concrete floor and it turns out my damn arm is fractured. Lesson learned: fuzzy socks and turning a quick corner on polished concrete don't mix. Guess who's not laughing, universe?

The doctor confirmed it today, after almost ten days of excruciating pain. (Originally there was too much swelling to tell on the X-ray). Today, the day Chris left for Africa for three weeks. On doctor's orders I'm supposed to "take lots of Vicodin and don't lift anything." I'm not totally sure how that's supposed to work with a thirty pound toddler and no spouse. I mean, I get the lots of Vicodin part, but my twenty-two month old still likes to be picked "up, up, Mama!"

How do you say no to this face?
Somehow, with the help of my wonderful sister-in-law and the skycaps at the airport (and probably some bribing of flight attendants), Quinn and I are headed up to Sun Valley for what I hope will be a restful, relaxing weekend with dear friends. My broken arm means I won't be skiing, but that means I get to spend a little more time making snow angels with my boy. That's one way to ice my injury, right?

The Light That Shines

Warning: this video is a tear-jerker, but it's totally worth it. Thanks to the friend of Chris that sent this along to him.

Friday, January 25, 2013


Did you hear the news? It takes me a little longer to post in this space than it does to update my status on Facebook (see my earlier post on sleep-deprivation), so just in case you hadn't seen it yet... MY PET SCAN WAS CLEAN!!! Chris and I got the news Tuesday afternoon and immediately headed out for a champagne toast. It didn't hit me until much later that I probably should have checked in with my office before going out for champagne at 3 pm on a Tuesday. Hindsight.

And the response from all of you has been tremendous. Obviously, we're elated, but it means the world to us that we've gotten such loud cheers from all of you as well. We got flowers yesterday from some dear friends with the best note attached. It said: We are happy to hear about your loss... Good riddance! And a friend from high school posted this in response to the news on Facebook: Jen. Wow. I feel like I just heard the world exhale with the peace of your news. Amazing, right? I am humbled and so fortunate to have such good people in my life. You guys have rendered me just about speechless.

So what does this mean going forward? For starters, the end of chemo. I'll get an infusion of maintenance drugs every three weeks until they come up with something better, but the side effects of those are minimal. My hair will grow back. A woman at Quinn's daycare asked me if the end of chemo means baby number two will follow, but neither of the maintenance drugs is compatible with pregnancy, so a second child is probably not in our cards. I'm not sure we'd have the energy for more kids, anyway. Did I mention I have a toddler who doesn't like sleep?

I'll still have scans every three months to make sure the cancer doesn't return (or if it ever does, we catch it early). I'll keep hoping for advances in treatment and possibly even a cure. 

And I don't think I'll forget this experience anytime soon, but as a reminder I thought I'd share my list of what I won't miss about chemo (which is pretty much everything). Sorry in advance if this is way too much information.

In no particular order: 
  • Bloody, crusty nasal passages. Gross, right? I'll be so happy not to have to shove Vaseline up my nose every night. 
  • Related: the metallic taste of blood at the back of my throat
  • Also related: being unable to taste my food and consequently over-salting everything
  • Neuropathy (tingling/numbness) in my fingers and toes
  • Nails that are lifting out of their beds and/or ridged beyond recognition
  • Stomach "issues". These last couple of rounds have been brutal for me, toilet-wise, and I won't miss it one bit.
  • Dry, itchy skin. Like get me a porcupine to rub against my legs now, please. 
  • Radiation recall. I wasn't even aware phenomena like this could happen, but when it did it felt like a fire ant colony had set up residence in my chest. Thank god for aloe. 
Chemo is no picnic, but the truth is, it saved my life. Twice. So kudos to modern medicine and especially the people over at Genentech (makers of my maintenance drugs). Also, as miserable as the side effects are, this guy made it bearable...

And this guy didn't hurt...
And we can't thank all of you enough for boosting our spirits, babysitting, providing meals, and everything else you've done to get us through the last eighteen months. We are so lucky.

Monday, January 14, 2013

Counting Time

As a cancer patient, I mark the passing of time in three week increments between infusions (a phenomenon described eerily by Susan Gubar for the NY Times here). These last three weeks - with the winding down of the holidays, Chris gone to the field for eight days, a huge work deadline for me, and Quinn's bronchitis and sleeping troubles - time flew by. It didn't seem like enough downtime between treatments. Usually, I'm feeling back to normal and exercising regularly by the time my next infusion rolls around, but out of sheer exhaustion, that didn't happen this round.

It feels like I've barely had time to come up for air, and the next wave is knocking me over again, dragging me under and spinning me around while I hold my breath and wait to be spit onto shore.

I had chemo this morning, and if you count the six rounds of chemo I had last fall, today was my fifteenth infusion over a total of thirty-nine weeks, which is coincidentally the exact amount of time I was pregnant with Quinn. This seems like a nice stopping point - just the right amount of time to produce a healthy new life. And as with pregnancy, my body is achy and tired, I'm having trouble sleeping through the night, and I'm totally ready to be done and on to the next phase.

When I finished up chemo last December, the nurses showered me with confetti and made a big deal of it being my last round; it's a tradition they do for all their patients. The few of these celebrations I've witnessed over the last six months were bittersweet for me, not having a definite end date or specific number of treatments to complete before I could say "I'm done!" this time. In the beginning of this cycle, all my oncologist would commit to was, "At least six months," and "We'll see."

As I think I've mentioned, I have a PET/CT scan this Friday. If it's clean, my doctor will drop the Taxotere (the chemo component), and I'll just be on maintenance drugs long-term, or as long as there is no evidence of disease. If it's clean, today will have been my LAST CHEMO, possibly ever, but there was no confetti this morning. My nurse didn't want to jinx anything; she didn't even mention it until she was giving me my flu shot at the end of the day, just before I headed home.

I'm trying not to get my hopes up, but after October's clean scan, I'm cautiously optimistic. And I don't know about you all, but as much as it makes for exciting cliffhangers and quirky plot twists, I'm ready to focus on something other than three week infusion cycles, how many steroid pills I still have to take, how few eyebrow hairs are still holding on (about a dozen per side, if you're interested). I'm ready for what's next: time to focus on my growing boy, time to write a book about this crazy journey, time to reconnect with my husband, time, time, and more time.

Saturday, January 12, 2013

Parenting 101

mentioned this post before, then thought of scrapping it because Quinn seemed to be back on track, sleep-wise. But I underestimated the depth and fortitude of toddler sleep regression. And the holidays happened. Then Chris left for a field project for nine days and I learned that being a single parent is pretty much the type of torture they outlaw at the U.N.  how I imagine it must be to tame a wild mustang, so ... not very easy at all.

But - hey! - at least I haven't had any time or energy to think about cancer. You guys were tired of hearing about that anyway, right?

We were pretty lucky for about a year. Other than a teething/double ear infection incident last summer that resulted in a sleepless night and a visit to a clinic in Canada, Quinn was a pretty solid 12-hour-a-night sleeper. He didn't always nap during the day, but we were willing to take that trade.

About a month three months ago, maybe two four, Quinn learned how to (very skillfully, actually) climb out of his crib. Chris and I were sitting at our computers catching up on work one afternoon when we heard the telltale "THUMP" and Quinn came running down the hallway going "woah, woah, woah," a huge proud grin on his face. With that skill acquired, he refused to nap because climbing is so much fun, mom!, so weekend naps disappeared. Somehow, they could still get him to nap at daycare most days. By the end of the day, though, he would be so wiped out that he made no effort to escape his crib at night. We figured we were safe for another few months before we'd have to make the transition to a toddler bed.

We might have been wrong.

Something switched for Quinn a couple of weeks months ago. It started with a 5:30 a.m. wake-up on a Friday morning and a refusal to go to sleep that night until after 10 p.m., three hours later than his usual bedtime. Saturday, he was up again at 5:45. WEEKENDS, KID - they're for sleeping in. We had a babysitter that night, and she texted me just after 7 to let me know how easy it had been to put him down for bed. I told her only half-jokingly that she was hired for bedtime forever.

This proved to us what we had suspected for awhile: I'm the problem in this sleep equation. Quinn is so utterly attached to me that he refuses to let me leave the room. And I suppose I'm a sucker because I'm not ready to lock him in his room and see if he'll chew his way out. I don't need those therapy bills.

Sunday night rolled around, and we thought we'd outsmarted him. I would do bathtime and read a few stories, but then I said my goodnights and left the house for Chris to put Quinn to sleep. Chris texted me 20 minutes later to let me know he was down and it was safe to come back in. We thought we were so smart.

We might have been wrong.

I had a hard time falling asleep that night, since I'd started my steroids for chemo on Monday morning. It was probably after midnight by the time I was out. Approximately an hour later, I heard the familiar thud and cry: Quinn was out of his crib and upset that his door was closed. We tried to put him back in bed, to no avail. The little escape artist would be up and over the railing before we'd even gotten out of the room.

We tried bringing him into our bed, and I think these people who cosleep with their toddlers must have beds twice the size of ours because I kept getting kicked in the face. We also tried me sleeping on the floor next to Quinn's crib, holding his hand through the slats to let him know I hadn't gone anywhere. My hand fell asleep as all the blood drained out and my neck cramped from the odd angle of my pillow on the hard floor. I was definitely not getting any sleep, and Quinn thought I was there to play. Every 10 minutes or so, he'd raise his little head and say sweetly to me, "Hi!"

We tried bringing his crib mattress into the floor in our room, thinking that would let him be close but not within striking distance of my head. He wailed to get back in bed with us, standing at the edge repeating, "Up, up, up..." like the world's cutest broken record. By 4 a.m., we were at our wit's end. By 4:30 or so, Quinn finally fell asleep between us and we were able to nod off for another 2 hours before Monday morning's alarm went off.

Not the best prep for a chemo session.

And this scenario has pretty much been on repeat since the 1st of the year, only this time Quinn threw bronchitis into the mix, I caught his cold, and Chris was gone for eight days. If I had any hair, I would have been pulling it out.

So, parents out there - any suggestions? I looked into crib tents, but they've been outlawed for suffocating kids, so I don't think we want to go that route. Have any of you had any luck switching to a toddler bed at 22 months? Do they make night nurses for almost 2-year-olds??? Where's Samuel L. Jackson when you need him?

Tuesday, January 1, 2013

Ghost of Christmas Future

This holiday season was a manic blend of family we don't see often enough -- but isn't that the case for all of us? -- punctuated by the logistics of toddler naps and last-minute shopping and scheduling time with all three sets of grandparents. Then, we threw in chemo the day after Christmas just for good measure.

I am just now emerging from the fog of this latest round, shaking off the cobwebs that settle in after each treatment and make it difficult to do much more than flip through Pinterest boards when I have a few spare minutes at night. At almost a week out, my intestines seemed to have stopped cramping and my appetite is back, even if my taste buds are not. And I can feel the steroids wearing off, little dying embers as the hot flashes fade away and my emotions stabilize again.

I don't know if it's just the time of year and all the nostalgia it brings or if it's the steroids, but I was especially weepy this year. Is it cliche at this point to say that the holidays are tough? With each one, I can't help but wonder if I'll be around for the next. And I hate that. I want to enjoy these milestones and celebrations without having to second guess cancer's plans or wonder whether the medicine is still working. There's a constant battle in my head between remembering to stay in the moment - No one knows if they'll be here next Christmas! You could get hit by a bus! How's that for cheering yourself up? - and being paralyzed with fear that I have very little control over this disease.

On the other hand, I have to believe I'm going to be okay.

Chris and I were catching up on the last season of Dexter a few weeks ago, and in one episode the main character - a single dad to a toddler - gets stranded at sea with just a piece of driftwood to hang on to. In the voiceover, Dexter starts talking about how it's not true that your life flashes before your eyes as you're close to death. Instead, it's all the moments you might miss in your children's lives - first lost tooth, first day of school, first love. I just about had to leave the room for that scene. But then Dexter got rescued by a group of Cuban refugees on a fishing boat and made it home in time to tuck his little boy into bed that night.

I might be living in a fantasy, but I have to believe my own Cuban refugees are just around the corner, that I'll be around for Quinn for a long time to come. I think there was a famous philosopher (or maybe Dr. Phil? thanks, chemo brain...) who said something about how insane we'd go if we thought about our mortality all the time. So I try to only think about it a few days a week.

I won't go so far as to call cancer a gift, which is a terrible analogy that gets thrown around a lot (maybe by people who are trying to help and don't know what else to say?), but in the days after the Newtown shootings, I kept coming back to the idea that at least I have some more time with my little boy, with my family. It is time often filled with the fatigue of treatment, steroid- and menopause-induced hot flashes, and at least 20 minutes in the morning to paint on eyebrows. But it is precious time that cancer reminds me to appreciate. Of course, then cancer scares the shit out of me about how much of that time is left, and I'm pretty sure I appreciated my life before cancer.

All of this to say that with the chaos and frenzy of the season (that's my excuse, anyway), I still get frustrated when Quinn won't listen to me even though it's the fourteenth time I've mentioned bath time and he's still running around laughing at me, refusing to put his arms up so I can take his shirt off. I get annoyed when Chris checks Facebook after a family dinner even though he interacted with my family all evening and probably needs a little downtime with his 454 closest friends. I say melodramatic things to him, like, "I don't even know how to have a relationship with you right now," for reasons I can't remember less than twenty-four hours later. Chemo is wearing on me; my edges are fraying.

I woke up early Christmas morning to cook breakfast for a small family gathering, tried to soak in the moments as everyone unwrapped gifts, and spent the day watching Quinn and his cousin playing on a new climbing castle - with a slide! I tried not to dwell on the fact that I had chemo the next day. I tried to push aside thoughts of future Christmases and whether I'll be here for them.

Because with any luck (and a clean scan later this month), I'll only have one more round of this crap, ever.