Many Lasts (and one First)

July 30th, 2014
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Zero more rounds of treatment!

There are a lot of lasts happening in our lives right now on the cancer front:

1. Clio’s last visit to the clinic for chemo, on the 16th. We marked the day by handing out homemade cookies to every nurse, doctor and staff member who crossed our paths, plus a few patients and parents, too. We also gave cards to some of the people who have been a major part of Clio’s care — the chipper nurse who managed a lot of the details of Clio’s meds and procedures, and who was usually the one to access her port. The Nurse Practitioner who oversaw Clio’s treatment and who we’ll continue to see and communicate with occasionally over the coming years. The awesome infusion nurse who helped Clio get through all 60 of those nasty Asparaginase shots in her thighs last year. The music therapist, who’s one of Clio’s favorite people to see on her clinic visits. It was a strange, surreal, sort of anticlimactic day. (I ate a number of the cookies we brought.)

2. The last dose of steroids. (And don’t let the door hit you on the way out!) Now that she’s off the juice, I hope Clio’s appetite for things other than starch and salt improves, too. We still have several bags of frozen, store-brand tortellini and ravioli in our freezer chest, casualties of her changing steroid cravings. (For the past few cycles, her frozen past of choice was gnocchi.) If you invite us over for a pot-luck and I bring a pasta salad, you’ll know why.

3. The last nightly blood thinner shot at bedtime. Another one we’re more than happy to kick to the curb. Clio’s poor little thighs have been mottled with bruises for a year and a half. Be gone, bruises! Be gone, needles and vials and sharps containers in our house!

4. The last dose of 6MP. As I wrote recently, I’ve always found this part a little bit sweet — sneaking an oral syringe of sweet white medicine into Clio’s mouth while she’s sleeping, or half asleep. It’s a moment for tenderness and gratitude and reflection in the dark. Of course, I’ll still sneak into the girls rooms and kiss them while they sleep before I head to bed. I’ve done it almost every night since they were born and don’t plan to stop until they’re the ones who go to bed first.

Buh-bye.

Buh-bye.

5. The last dose of Methotrexate. It took a few tries, but we finally ended up with a warm, caring, reliable and conscientious visiting nurse whom we loved, who came weekly to access Clio’s port and draw labs and/or give her her Methotrexate. It was an emotional moment to say goodbye.

There are still a few more lasts to come — another medicine that will drop off the roster, and the last time her port will be accessed for labs before it’s removed next week (a whole other source of anxiety). Then, for the next six months, only one prescription to keep after — a prophylactic dose of antibiotics while Clio’s immune system rebuilds itself.

With all these little burdens being lifted — with this crappy (horrible, terrible, shitty, lousy) little boat trip coming to an end at last — you’d think that I would feel lighter. Excited. Relieved. It’s how everyone seems to expect me to feel. But the thing is, I don’t really. Instead I feel disbelieving and disoriented and numb. More than a little anxious, and even a little bit sad. What is up with that? My daughter has spent the past two years being treated for cancer and there’s a part of me that’s sad that it’s over?

Read the rest of this entry »


Nearing the Home Front

July 13th, 2014
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What will we do with the big empty spot we’ll have when we ditch this stuff? I’m thinking accent chair…

Holy crap, I haven’t posted in almost a month!  Yeesh. Well, moving will do that to a blogger, I suppose.

The past few weeks have been a frenzy of packing up, moving out, moving in, cleaning, unpacking, dodging painters, installing things and logging miles between various big box stores. I’m a fan of shopping local and all that, but man, Target and Home Depot sure come in handy when you need, for example, 3 towel bars, 2 toilet brushes, curtains for the master bedroom, Contact paper, four 30″ cellular blinds – wait, no, make one of those a 29″, because for some inexplicable reason one of the windows in the room is one inch shorter than the rest — and non-aerosol insect repellent, because the girls need to bring it to Girl Scout day camp with them. Oh, and toilet paper. And make sure two of the towel bars are brushed chrome, not the regular shiny kind! Why? I just like them better. No, I don’t know why they’re three dollars more. Just get them.

So, life has been pretty chaotic and exhausting, and there’s still tons (tons!) of unpacking and arranging left to do. But it’s starting to come together and feel more like home. I’ve now cooked three actual dinners in the kitchen — as in, dinners that involve more than just warming something up in the microwave.

One of the biggest changes in our living situation — besides the fact that now, when the windows are open, I can hear wind rustling through trees instead of people cursing at each other — is that the girls now have their own rooms. They’re both pretty happy with this, especially Clio. (I think Elsa is of two minds; she likes it,  but also feels a little lonely at night.)

But it hasn’t been a screaming/whining/fighting-free transition. Before, the girls’ clothes were all together in one (increasingly crowded) dresser and one closet. Their books and dolls were commingled. And there were no “keep out” signs on the door. (Intended for sisters, not parents.) But hopefully things will improve as they get used to the new arrangement.

 

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I’m pretty sure Clio started with the “Keep Out” part, then decided to temper it with the “(k)nock ple(a)se”

 

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Elsa’s is more detailed and polite, but you get the feeling this has been an ongoing problem — perhaps for all two days we’d been in the ouse — hence the “Please!”

 

In all this transitioning, I’ve barely had a moment to stop and think about the momentous fact that Clio’s last round of treatment starts on Wednesday. Not brooding is good. But now that the dust is settled a little bit, I’m forced to confront it — and feel like I should. And really, it’s hard to digest. How can it be that after this cycle we’ll never (knock on wood) have to deal with steroids again? We’ll never have to load up on drugs at the Dana Farber pharmacy on our way home from the clinic? I’ll never have to slip a syringe of 6-MP between Clio’s lips while she sleeps? And after she gets her port out in a few weeks, no more Lovenox shots in her thigh before bedtime.  Read the rest of this entry »


On the Home Stretch

June 12th, 2014

photo-11Holy moses, we’re moving in a week and a half.

Our house is officially a complete disaster area, half boxes, half business as usual. It’s a tricky thing to live in a place and carry about your regular routine and be simultaneously preparing to uproot yourself. And man, after eight years in one place, uprooting is a BIG pain in the ass. Like most Americans, we’ve got way more crap than we need, and while we’ve offloaded tons to charity, freecycle, and the junk man (I like to think of there being just one little old man who goes around carting away everyone’s junk), there’s lots that we can’t or don’t want to part with.

It’s strange, packing up the china closet and finding fancy serving dishes and bowls and things we got as wedding gifts that we literally haven’t touched since the girls were born. I look at them and think of how much younger we were when we occasionally used them as a kid-free couple, and yet how old and sophisticated we felt to have such grown-up things! And here we are, forty, much more grown up, and much too exhausted to host dinner parties with fancy serving dishes for friends who would have to pay sitters to come anyway. Maybe in five, ten years, we’ll use the fancy things again. And then not too long after that, we’ll be giving the same kinds of things as wedding gifts to our friends’ kids, for them to use for a few years before they reproduce.

Sunrise, Sunset! Sunrise, Sunset! Swiftly flow the days…

Yes, this is what this move is doing to me: In the midst of all the cardboard and tape and logistics, I have these moments of reflection and awareness that this is a Big Life Change. We’re leaving our first house, where our girl were born. And before we know it, they’ll be grown and out of the house and starting families of their own, and then we’ll move again, to some nice little condo with the bedroom on the first floor, and then we’ll be dead.  Read the rest of this entry »


I Love Facebook, Dammit.

May 31st, 2014

facebook-evolution-640As I mentioned in my last post, I decided to give up Facebook for the month of May, as an experiment, and in hopes of getting more (novel) writing done.

I tend check Facebook multiple times a day, sometimes in an almost compulsive manner. Not so much when I’m writing fiction or nonfiction, when I generally use software that turns off my internet connection, but when I’m doing my copywriting work, and need to keep email and various websites available. (And yes, I have the software that lets you block social media sites, and I use it sometimes but, hey!, there’s my iPhone with Facebook on it.)

But I worried that Facebook was getting in the way of my productivity in general, distracting me too much, and pulling me off track too frequently. (Oh the rabbit holes that are YouTube or Funny or Die or The New York Times — and a good link on Facebook can easily send me tumbling down into them…)

There was also the weird sensation of a sort of Facebook consciousness when going about my everyday routine. I’ll have some funny experience or make an observation and think: I should share this on Facebook! And how would I word it? And who will have a witty comment in response? It sort of freaks me out a little, that my brain has gotten trained that way.

Anyway, I decided — inspired by #BoNoProMo, “Boston Novel in Progress Month” — to take the leap and take the month off.

And you know what? I hated it.

It was, to my surprise, not that hard to resist logging on. I didn’t actually disable my account, for various reasons. I just generated a crazy random password — one of those insane ones we’re all supposed to use to foil hackers, like fN45$s<Qnn..?P242z7 * — that I’d never be able to remember, and wrote it down and hid it away. But I could have logged on if I really wanted to go through the trouble.

haven’t missed the dopey “copy and paste this status if you believe that it’s wrong to kill puppies” type things. I don’t miss people having political debates that go absolutely nowhere. (And I don’t miss getting pulled into them myself.) And for God sake’s people, ENOUGH WITH THE BUZZFEED QUIZZES. (I’m convinced the results are just randomly generated anyway.)

But I really have missed the camaraderie, and the updates and the sharing and humor and, yes, even the dopey viral videos. I miss the tributes to people, famous and not, who pass on. I miss congratulating people on their successes and sending them prayers in difficult times.

I’ve realized that as someone who is self-employed, and spends most of her day sitting in front of her computer, alone, Facebook really is my version of an office water cooler or kitchen or cigarette break. It’s my touchpoint with the rest of humanity, and with the people I care about, or am nostalgically curious about, or (in some cases) can’t even remember how I know, but have a fun FB rapport with. It’s my little breather and reward when I’m working my ass off — whether it’s working on my novel or writing website copy about medical testing equipment.

And, truthfully, I’m not sure I’ve been any more productive than usual without Facebook. There’s the fact that there are plenty of other ways to distract oneself on the Internet (my Twitter presence has definitely gone up, but Twitter sort of leaves me cold compared to Facebook.) But the larger reason is that I think that Facebook breaks actually give me the re-fuel I need (or have conditioned myself to need) to be productive.

So, contrary to some people’s theories, I will not be saying a permanent goodbye to Facebook. I can’t wait to get back on.

BUT there are a few changes I’m going to make. First of all, I will not be putting Facebook back on my iPhone. I just don’t need that level of distraction and connection throughout the day. I don’t want to have a knee-jerk look-at-my-phone impulse whenever I get a spare or quiet moment.

Second of all, I’m going to try to downshift the number of times per day I check Facebook (I’m going to uncheck the “keep me logged in” box), and keep it for “dessert” after I finish a task, rather than something to snack on in the middle of it.

OK, wait; that analogy doesn’t quite work, because if the task is the meal, you don’t snack in the middle of a meal, right? I suppose it would be more like saying that I’m not going to take bites of my cake in the middle of eating my spaghetti and salad. Because that would be gross.

No spaghetti and cake! I should write that on a post-it and put it on my computer. (Elsa would read it and say: Yum! Is that what’s for dinner?!)

Or, to change metaphors, I don’t want Facebook to be that annoying co-worker who comes over and starts blabbing about the weekend or bitching about office politics or whatever, and WON’T LEAVE, even when you literally start typing while they’re still there, and you end up just pretending you need to go to the bathroom so you can get up and walk away. (Except — another analogy flaw — that co-worker sucks, and Facebook doesn’t.)

I’m glad I took this Facebook fast, if for no other reason than to prove to myself that I could do it. I am not a cyborg yet. But I also feel less ashamed about saying, loud and proud, I love Facebook, dammit. And with a few tweaks in my usage, I’m looking forward to rejoining the village.

So…what did I miss?


A Zillion Down, Three to Go.

May 20th, 2014

10171727_10202834606199352_4874946374475899127_nYesterday marked the end of Clio’s fourth to last round of treatment. Only THREE MORE LEFT!!

What does this mean?

Only three more doses of vincristine. This is the stuff largely responsible for the fact that while Clio’s got lots more hair than she did when she was getting doxyrubicin, it’s still pretty thin and not growing very fast. I expect her to be sporting a luxurious mane by Fall! Vincristine is also responsible (we think) for the fact that Clio still can’t walk or run at her pre-cancer speed, and her gait is a little funny when she does. Her Olympic track and field training will commence in August.

Only 12 more weekly doses of Methotrexate. Three of them, she’ll get at the clinic when she gets her vincristine. The rest, I administer myself at home. Since last summer, two weeks out of every three, we get a home visit from a nurse, who accesses Clio’s port, draws blood for labs, and leaves the port accessed. Once Clio’s lab numbers come back, usually the next day, I get the go-ahead to give her her Methotrexate. It’s delivered from an infusion company, along with syringes full of saline flush and heparin and gloves and alcohol wipes. And I get to play nurse.

The process made me insanely nervous at first, but now it’s become second nature: Alcohol wipe, saline flush, alcohol wipe, chemo, alcohol wipe, saline flush, alcohol wipe, heparin lock. In fact, the hardest part is getting the damned dressing off the port needle at the end. (Imagine having to peel the world’s biggest, stickiest bandaid off your child’s chest. Oh, and the band-aid is covering a needle that pokes into your child’s skin.) Then I pull out the port needle — still sort of scary — and off she goes. Read the rest of this entry »