Hosed

March 10, 2011 at 11:26 AM (Energy, Treatment) (, , , , , , , , , , , , , , )

Quickly, before it falls off the current-events list: The Carcinista’s Oscars Red Carpet Review! Who hit, and who missed? Which actor had the worst tux? And, most importantly, how many collagen injections has Nicole Kidman gotten since the Golden Globes? Stay tuned, faithful readers, for the latest…hot…umm…news…

Hmm.

It appears I have missed a few days on the calendar. Where on earth have I been?

Riiiiight, sick. Started last Monday with my crack-of-dawn PleurX catheter insertion, followed by a surprise night admitted to the hospital. They wanted to drain me for 24 hours, then get an X-ray, so I spent the WORST night of recent memory not sleeping for more than 45 minutes at a stretch (roommate fell asleep with TV on; nurse turned it off; finally fell asleep, then shift-change vitals check; took 2 nurses to untangle my hoses so I could go pee, etc. etc.). I swear, those women get paid by the depth of the shade of the dark circles under your eyes the day you leave.

Tuesday I was raring to go home, and after some false starts (and one out-of-order X-ray machine), they sprung me, and Mr. W dragged my carcass home for a nap. Pain was under control with Dilaudid, left lung had been drained; I was tired, but SuperMom was in da house and taking care of business for me. I slept well, ate little, thought I was recuperating.

Went to see my oncologist (Dr. A) for a treatment revision on Thursday morning. Cancel the clinical trial, start chemo again. This time: Navelbine (“nav-” as in “navigate”, “-bine” as in “coffee bean.” It’s Fransh). All members of the team were “go” with the chemo; we’d start on Tuesday, no waiting. Great – I love a plan. Home to rest for the weekend.

I felt so decent (i.e., not in pain) on Saturday morning that I decided it was time to quit the dilaudid. I had started to get twitchy at the end of my four-hour dosing schedule, and I hate that. I thought Tylenol would get me through, with Tylenol PM for the evenings. Ooooh, was I wrong.

I lay awake twitching most of Saturday and Sunday nights, moving from the bed to the couch and back in search of a comfortable position. (I’m a side sleeper, and once my right side gets bored, I usually rotate. Only I had this big hose hanging out, and two incisions. Ow.) I tried propping my left side on pillows; lying flat on my back; lying on my stomach with pillows propping me up. Child’s pose. Happy baby pose. Nothing was comfortable. Not to mention that I felt like I wanted to crawl out of my skin.

Fortunately, when my home nurse arrived on Monday morning, she chided me that it was “way too soon” to stop taking pain meds. Thank heaven. Took a big, fat Vicodin and a three-hour nap. But you can’t take narcotics and drive, so…

…When I arrived at The Cancer Factory for my new chemo on Tuesday morning, I was pain-med free and eager to talk about it. My fantastic NP was so empathetic — the first thing she did was order me a quick-acting (and quick-ending) dose of morphine so I could relax. Then she set up an appointment for next week with the pain-management and palliative-care specialist doctor to work out a plan, which will probably include a Fentanyl patch for 72 hours of continuous relief.

Stop freaking out — “palliative” doesn’t necessarily mean that I’m on the way out; it’s a specialty that focuses on the quality of life of patients with chronic illnesses, and on easing their pain issues as manageably as possible. I can work with this doctor for YEARS.

So, short story long: lung tapped and putting out about 25cc (3 Tbsp.) every other day. Tube uncomfortable, but tolerable with Oxycodone and Tylenol. New chemo is okay (side effects: constipation [woo hoo] and fatigue [oh, yes]); I’ll get it once a week provided my blood counts stay healthy. Dragging the oxygen hose around my house is like a bad Keystone Kops sketch, what with the 50 feet getting wrapped around the dog, the kids, my legs, stuck in doorways and over dresser drawer knobs. And despite advice, I have yet to Beadazzle my Casino Canister (thanks, Pateeta!). Possibly I will wrap it with feather boas. To match each outfit.

And we watch and wait. Hope you’re more patient than I am.

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16 Comments

  1. Mr. Wonderful said,

    Hoser!

  2. Danielle said,

    How is it with all you got going on you can make me laugh and feel just plain good. You are special! I hope you have an awesome Pal. doctor- they are some pretty special docs.
    Always praying for you, the kids, your guy and the cat. Have a great rest of the week and weekend.
    Love Danielle

  3. Gay said,

    Who’s to say the nasal cannula won’t be the next hot fashion accessory? Not only does it have a practical use, it looks a heck of a lot better than some of things I’ve seen pierced lately :). And that totable unit will surely get you some of the best parking at the mall. Hang in there!

  4. Jennifer said,

    I hate not being able to get comfortable when all you want to do is sleep!! Glad the drugs are fending off the pain & allowing your humor to shine through. Hugs!

  5. Maggie said,

    Up, down, up, up, down, down, down…..ride that roller coaster! And keep those pain meds coming, no need to brave it out, you’ll do better if you don’t have to focus on the pain. Keep the stories coming, just love, love, love your spunk!

  6. Wendy said,

    Just say YES to drugs!
    Looking forward to seeing you soon!

  7. Jane Horn said,

    We marvel on your strength and spunk, Sarah. You go girl! God bless you over and over and over again.

  8. Sue Mellusi said,

    I grow to love you more with each one of your stories that I read. Keep laughimg and keep those drugs pumping :)

  9. Thad said,

    “Casino Canister”…. so funny. Should I feel guilty when you make me laugh about cancer?

  10. Beth L. Gainer said,

    Sounds like you’ve been through more levels of hell than Dante’s Inferno. I hope and pray you are doing better soon.

  11. Beth L. Gainer said,

    Great posting. I have you in my thoughts and hope your dark circles under your eyes have disappeared.

    My nights at the hospital have been nothing short of hell.

  12. Ann said,

    OMG too funny, nurses getting paid by the depth of the dark circles under your eyes. LOL.

    Girl, you need one of those universal remotes – the size that fit in your pocket. I think you can get them on Think Geek. Next time you get stuck with a roomie with a TV problem, use it. You can play innocent while at the same time giving those nurses a cut in pay.

    Glad you are feeling better.

  13. Kathleen said,

    Thanks so much for the posting. I think of you everyday and I wish you well. Your courage and determination inspire me.

  14. patricia said,

    Just dropping in to say hello and let you know I was thinking of you … :~)

  15. Kimberly Cullen said,

    Hey Sarah!
    I know you are gone but I wanted to tell you how I admire your couragious spirit, love of fashion and the woman you became (& girl you were at school)!!! You are so kick ass! Love it!!! I heard that you were dx with Ovarian….I wanted to pick up the phone so many times and be like…”do you remember me, Kim Cullen, from AIS?” I thought of you often and struggled with calling – i wish I did. I attended your memorial sitting next to Michelle Markel and Leslie Gross. I am sorry you & your family had to go through this. I hear so often- since it is my field- about Ovarian Ca. I wanted to make sure you knew and your family knows that I fight every day for early detection. I educate Physicians about BRCA Cancers and unfortunately Ovarian – regardless of age or family history is part of this syndrome. I always wanted to talk to you about this – for your family- but I knew this was none of my business. I hope your family can be empowered by this message and perhaps someday someone will be tested and we can prevent this in your boys & their children (other cancers types are associated w/ BRCA such as prostate and pancreatic). I lost a friend, Tracey, before you passed – they thought the primary was Ovarian. I am so sorry I did not call you.
    xo, Kim

    • Sarah said,

      Hi Kim,

      Thank you for the note to Sarah – and to the rest of us. The kids and I are doing well. Your note is appreciated. It was nice to know that someone out there was thinking of her! I’m pretty sure Sarah did get tested for BRCA and it came back negative. But I will be sure to check again in the records. I appreciate you taking the time to ask.

      I’m going to be running my third Boston Marathon this spring with the Dana Farber Marathon Challenge team to raise money for their innovative research program. I’m shooting to raise $10,000 to go toward this so that more researchers can find even better treatments and cures for the many different cancers out there. In my mind, my effort is so small compared to the challenge in front of the researchers – and of course the challenge endured by those who have cancer.

      Thank you for doing what you do. Please keep it up!

      On the note about not calling. Please don’t beat yourself up about that. I have had to come to terms with many things that I wished I could still talk to Sarah about. And other things I wished I never had said. But, over the past 9 months, I’ve learned that when you wish you could have done something differently, rather than worry about it, take that knowledge and put it forward in your life. So, in the future, when you’re on the fence and not sure about making that call or saying hi, do it. I’ve actually pushed myself on this exact same thing. And so far I haven’t regretted it.

      Thank you again for reaching out. It’s nice to hear from you.

      Sincerely,

      Mr. Wonderful

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