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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22 Comments

  1. Donna said,

    I wish I could come hug you right now, your strength is incredible. You are the most beautiful person I know that I never met. I think of you often. Much love to you and yours. Love you, Donna

  2. Carla Bornhoft said,

    I am sending lots of prayers your way. Hang in there and stay strong. My mother is also battling ovarian cancer – your story has a special place in my heart. Much love!

  3. Mr. Wonderful said,

    I guess it was a good thing you didn’t need your car this week. Love you! Me.

  4. Caragh said,

    It was great to see you and spend a little time with you this past weekend. Thinking of you.

  5. Emily said,

    Ditto what Donna said: you are the most beautiful person I know that I have never met. Always thinking of you, always with you in this confounded fight. xoxoxoxo.

  6. Jennifer said,

    Very much looking forward to coming and sitting on your couch next week! Sounds like perhaps we should fire up the Sarah’s Helpers again. Just say the word sister! Hugs to you!

  7. Nancyspoint said,

    Sarah, You don’t sound like an old person!. Young people play Scrabble too AND take naps! I think you and your family will enjoy whatever you decide to do on spring break, being together that’s what counts. Enjoy all your other visitors too. Hope you get those improved breathing results you want by next Monday. Sending good wishes your way.

  8. Betsy said,

    Daytrips….how about a nice B&B in the Berkshires. Or, Mystic Connecticut is really fun, particularly the aquarium. Stopped by today and met your mom. She is lovely. Hope to stop by again soon. Sorry I made the dog bark!

    • Mr. Wonderful said,

      Darn dog!

  9. AnnaR said,

    Geez with all those “frequent-patient miles” you’ve been accumulating that should have been good for something other than friendly nurses and a better-quality snack cart! I’m thinking big-ass house, somewhere with a view, and stocked to the ceiling with games, DVD’s and sugary treats for all. 😉

  10. Ada said,

    Hi, Deary
    You are amazing, Sarah, you are so strong.
    Our here on the west coast thehe swallows are back, the cherry blossoms are in bloom.The sun is out and winter is over, I hope you can get out in sun and enjoy spring.
    I send my love and my prayers.
    Ada

  11. Connie Reeves said,

    I wish I had 1/100th of your humor, your writing ability, and your courage. I have never claimed to be funny, but I have been a writer for about 15 years or so, maybe more, and I’m a retired Army officer, so that validates the courage part. But you are totally amazing. I have a publishing company and my gyn-onc wants to write a book with me about ovca. I think it would be far better to make a book out of your posts. What do you think? email me at pbwritr@msn.com

  12. Dee said,

    Gee, I wish I could come over , sit on your sofa and chat too. I guess this reply will have to do.
    Sorry you have to change your plans. I know a great place in PA that is like a cruise on land. It has been voted top family vacation place by a magazine ( chemo brain will not allow me to remember the name of said magazine) and Ask.com. The name is Woodloch Pines( woodloch.com) . We’ve gone there for years in the winter time but I am sure it is wonderful any time of year .

    Cyberhugs

  13. Holly said,

    Sending nothing but love, hugs, laughter, and prayers your way fellow ovarian cancer fighter…

    Clover 🙂

  14. Sami said,

    Waaait, I’m 23 and I play scrabble! 😉

    I live in New England, and I’m in the tourism industry, so if you need any ideas, I’m your girl!

  15. Emily Schottman said,

    Hi Sarah,
    Been awhile since I emailed. I am your mystery blog reader in Austin, TX. I have 2 kids, 3 offices, Multiple Myeloma and a crazy life…but I always make time to read your blog. The Carcinista is an amazing title and you do it more than justice. Please pass the crown when you are ready. Lots of positive energy coming your way.
    Warmly,
    Emily (another one!)

  16. tori said,

    I’m a scrabble slut – I admit it. And I’m not old – still in my 30’s in fact. (at least for the next 48 hours) Game on sistah-chicken.

  17. Dawna said,

    Read this in between flights on the way back from Maho. It was the news that you (and I) didn’t want to hear… Remember commenting on a photo of mine from Mexico last year that I should make a poster of it and put it at the end of my bed? How about we do that with a Maho photo?! You pick the photo and I’ll make the poster. Then, we can find some recordings of crashing waves and tree frogs to play as you go to bed at night. It’s not the same, of course, but it could help recall some pleasant memories :)Thinking of you and sending you love and light, sweet Sarah…

  18. kristalley said,

    I’m a fellow ovca traveler who’s been meaning to chime in with how much I enjoy your writing for awhile now. Followed a link to it from somewhere last year and was hooked. Forgot to bookmark or otherwise note where it was and spent some time searching for “cancerista” before I was reunited with it. What you’re going through now sucks – just no way around that. But I admire your ability to continue to describe your experience in a very straightforward and humorous way despite everything. I will try to magically instill special curative powers on your Navelbine as I do the same for my own chemo cocktail. Online scrabble is also one of my drugs of choice right now so if you’re serious let me know.

  19. ron said,

    your honesty and openness shows courage, and lots of it. I really hope this courage and strength will get you through what you are going right now. from the number of comments it seems many people look up to you and eagerly wait for your post, so stay strong and keep your head up

  20. Adele said,

    SSF, i’ve also been hooked on reading everything you write since that beautiful note you sent about my grandmother, still in my dresser drawer, that I have reread countless times. I also led me– via uncle google– to your site and into your orbit, and I am extremely grateful for that. your humor is so generous, your style so distinct– I’ve been a superfan of this blog even as it breaks my heart what you are dealing with. i’m sure you would kick my ass in scrabble–marriage to a dyslexic makes one overconfident in word games– but I’d come play anytime if you’re inviting. xoxo

  21. patricia said,

    Thinking of you …and your family. Have a blessed Easter ~ xx’s patricia

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