Au Bout de Souffle

March 22, 2011 at 11:50 AM (Energy, Treatment) (, , , , , , , , , , , , , , , , )

It’s been an interesting week since I got home from the hospital. Breathing is not better than it was last week, and I still need to rest to catch my breath after changing my shirt, walking down the hall, or visiting the loo in the middle of the night. My medical team keeps exhorting me to give the old-reliable Navelbine a chance to work, that it’ll be at least three cycles (yesterday) and probably four (next Monday) before we start to see results. I’m hanging in there, and trying to keep my inner cynic quiet while twiddling my thumbs.

I’ll have plenty of time to do that, what with my new pain meds keeping me from driving and everything. SuperMom has come to town indefinitely to fill in my gaps…er, gaping holes. I hope that a switch to a Fentanyl patch next week will allow me to drive again, but for now I’m a Roxy-Zombie who’s great at conversation and sleeping, but not much else. Well, except finding pretty patterns in the rug or wallpaper or shadows and clouds.

Another delightful development is that our spring break is taking on a whole new shape. I’d say “I don’t want to talk about it,” but with my acceptance of my path on this journey comes a little peace at changing plans about which I can do nothing. Yesterday, Dr. A told me that she doesn’t feel comfortable with me taking an airline trip anywhere, which, following my last flying fiasco, I completely understand. And I certainly can’t be spending ten days (10!) on St. John at the end of April. No good medical facilities nearby; no liquid oxygen delivery, no emergency aid. Cancel the trip to my happy place — no one wants to go without me unless and until they have no choice.

So instead of flying, we’re looking for a driving vacation, preferably something within a couple of hours’ drive of Boston, justincase. I think we have a couple of good ideas; now we need to start convincing the kids that they’ll have just as much fun in New England in April as they would have had in the Caribbean, a vacation to which we have all been very much looking forward since, oh, the day we left in 2010. They’re good sports, but how much of the rah-rah Kool-Aid will they drink?

The good news is that we’re getting to the stage of my illness when people start coming round to see me all the time. Just for coffee and a chat, but I’m having lots of visitors, people I don’t see nearly as often as I’d like. It’s lovely! They come sit on my couch in the sun, bring me Starbucks, visit, tell stories and make me laugh, then go home just in time for me to take my nap.

Wow, I sound like an old person. Scrabble, anyone? (With all these meds on board, I’m an easy target.)

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Lighten Up

August 12, 2010 at 11:25 AM (Family, friends, mommy guilt, Zen) (, , , , , , , , , )

Last week we had a mini-vacation and went to stay with friends on Martha’s Vineyard. We slept in, ate too much, had beers with lunch, napped on the beach (my favorite four-word phrase in the English language), went out one night without the kids and finished conversations. Ate s’mores. You get the idea.

I had succeeded in mentally reminding myself for three mornings not to forget to carry with us or administer my delightful meds (which must, you remember, be kept under refrigeration below 46˚). Since there were coolers all around, going to the beach, etc., I was able to dump them in and choke them down in the vacation-short space between breakfast and lunch.

Reluctantly, on Saturday we packed up our bags, double-checking under beds, nearly forgetting swimsuits and towels drying on the deck rail. I loaded my bottle of iced tea and the boys’ water bottles into the freezer to cool down before packing the cooler for the trip home.

The horde of us descended on a fish shack in Vineyard Haven to grab some lunch before catching our 2:30 ferry. As we waited with the hordes of other hungry people for our lunches, though, we realized we wouldn’t have enough time to eat and still make the boat. We grabbed our bag of sandwiches, said goodbye to the wife and kids of the family we stayed with, and the dad drove us the rest of the way to the ferry dock. Hugs all around, double-check the back of the car for our stuff, and bundle ourselves into the growing line of passengers waiting to climb aboard.

Son #2 dropped his Gatorade bottle for the seven-hundred-and-forty-third time, and I told him, “One of these times, that bottle’s going to split open, and then you won’t have anything…to…drink…but…water…until…” ::Crickets::

“Mr. W, did you grab the cooler?”

“No.”

Crap. “Left my damn drugs at the house!”

I turned and started running (wearing a 35-lb backpack, no less) out to the street where I could see our friend had just been waved into heavy Saturday August Vineyard traffic by the cop trying to keep order. Thank heaven his window was open.

“MARK! MARK!” He turned to look at me.

“I LEFT MY DRUGS AT YOUR HOUSE!!!” (In hindsight, not the best sentence to shout across a crowded intersection in front of a policeman.)

Revision: “I left my meds in your fridge!”

He pulled back into the parking lot, and my three gentlemen shuffled over and got back in the Jeep. I started in browbeating myself about my forgetfulness. “Jeez, I can’t believe I forgot it. I’m so sorry to make you have to come back. I can’t believe I didn’t remember that stuff! How many times did I remind myself that I had to get the cooler? What an eejit.”

This went on for about five minutes. Then I stopped for a second, and realized that I was the only one beating me up about it. Not even any teasing (unusual). And in a flash of maturity, I quit. No one seemed to be upset about having to miss the 2:30 but me. And on second thought, what the hell did I care? Why was I getting all jacked up?

We rode back to the restaurant to finish lunch (the best lobster roll I’ve had in years) with our friends. There was another ferry at 3:45, which meant we’d get home to pick up our dog a little later. No harm, no foul – it’s not like we had an appointment or something waiting back on the mainland.

This verbal self-flagellation is a lifetime habit for me, and I suspect for many others. Does it come from my desire to cut on myself before anyone else gets a chance to? Or am I so concerned about inconveniencing others (and possibly having them speak disparagingly about me after I leave) that I am trying to make sure they know I’m not really that inconsiderate?  Whatever the reason, it’s stupid, and a waste of energy.

It’s time to adopt the Dr. Seuss quote I heard recently and have come to adore: “Be who you are and say what you feel, because those who mind don’t matter, and those who matter don’t mind.” I’m a good person, my friends know it, and my life is way too short to spend time browbeating myself for mistakes. Everyone makes ’em, and we’re all doing the best we can. Move on.

Photo credit here.

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