This Is the Droid You’re Looking For

February 24, 2011 at 5:51 PM (Energy, Treatment) (, , , , , , , , , , )

Oh, it’s been an interesting week. I know I’ve been quiet, but I really can’t bring myself to clog the ether with the neck-snapping back-and-forth that leads from one mile marker to the next. Now that the dust is settling, I’ll net it out for you.

Two lung taps; one three weeks ago, one yesterday. Not much fluid, but it made a difference in my breathing. (It sure didn’t improve my blood pressure — the first appointment, I waited over two hours; yesterday — three-and-a-half.) But as soon as I left the hospital last night I started coughing and couldn’t stop; when I called my medical team this morning, they prescribed Cipro against a possible infection, and home O2.

This is an image I’ve been avoiding since I first heard my lungs had metastases: the feeble little cancer patient, stooped and dragging her green canister around with her, unable to do anything. I knew it was out there, somewhen, but didn’t think we’d get there quite so soon.

But vanity must fall to the ability to breathe (and talk — I could barely talk!!!) And so, this afternoon, R2-D2 moved in.

37 liters of fun. And no, it's not a kegerator.

That little beige guy on the right is the portable unit, thank heaven. So I can shop without dropping. Or dragging my little-old-lady tank cart behind me.

I’m now breathing 2 liters per minute of pure oxygen. I suppose I should be grateful — don’t people pay big money for this service in nightclubs all over Scandinavia? I’ll let you know if my wrinkles disappear.

Also, on Monday I’ll be getting a pleurex catheter, a permanent installation between my left ribs with a little catheter that coils up and gets taped to my side. That way, I can drain my OWN lung when it needs it, instead of schlepping downtown and waiting all afternoon. Downside: no swimming. Ugh.

I also might be changing treatments, going back to one of the conventional chemos I haven’t tried yet: navelbiene (I know, it sounds ridiculous) or hexalen. I’m disappointed that my trial isn’t doing a better job; the first six weeks were so promising! I must have MENSA-smart tumor cells, so clever at adaptation that they can outsmart any new therapy within two months. I wish there were an application to take advantage of all this primal smartitude: discovering the key to nuclear fusion, balancing the federal budget, finding Jimmy Hoffa…

…curing cancer…

Photo credit: The Carcinista

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26 Comments

  1. Laura Bentz said,

    Hugs….

  2. Patty said,

    DAMN it! We do seem to be sharing a lot of the same experiences. And they all suck!
    I am shopping for a wedgie-pillow type thing; I can’t seem to breath when I lay flat on my back anymore so I need to be propped up. I didn’t get that catheter, I’ll ask about that at my follow up appointment. Your R2-D2 is waaaaayy cooler than mine! so modern looking! I’ll pick the shiny one every time! I also have my portable, I cal it my Casino Tank because that’s what all the little old ladies bring into the casinos. I’m always trying to calculate how much oxygen they have left or if they brought the spare in the car!

    Got you always on my mind and in my prayers, my sister. Stay strong. You are loved..
    xoxo
    Patty

  3. Bill K said,

    Or Whitey Bulger.

  4. Ruthann said,

    I was gonna say what Bill K said….he beat me to it by 5 minutes. Let’s face it, we are never gonna find Whitey.
    Thinking of you and knowing you will be a stylista with your portable! Sending all things positive in your direction.
    Ruthann

  5. Carol said,

    Damn, damn, damn. I wish things were so much better. You’re never far from my thoughts. Love you.

  6. themudroom said,

    At least your supersweet Star Wars WPA posters are helping the little guy feel at home, no?

    Mwaaaaaaaah,
    P

  7. Emily Beck said,

    Always glad to see an update from you, sister. Good to know you’ve gotten some relief, and that your humor and insight remain intact. Sending massive good vibes and love your way. Picture riding those waves in Santa Barbara…

  8. tori said,

    I’m so mad at your doctors for making you sit around waiting for them. What a complete waste of your time!! Feel free to bring me along next time and I’ll pull a Sally Fields on them.

    Also – this just sucks.

    Will your travel oxygen fit in your purse or do you need a bag? Because – you know you can get them here (www.02totes.com) or on etsy. I’m sure you have a much edgier/nicer bag though.

  9. patricia said,

    Thinking of you… xx

  10. Maggie said,

    I hate cancer, for you, for me, for Patty…..but I am glad to hear you can breathe better, and TALK, that’s important, you need to make all those snarky comments! If I don’t hear them, I get a little crazy, y’know?

  11. Ann said,

    Okay, so I’m trying mightily to think of a way to make that icky beige canister stylish to fit the fashionista we all know and love. I suppose you can tuck it away in a big Marc Jacobs bucket bag. They make iPhone, iPad, netbook, laptop skins – what about oxygen canister skins? Could that be your million dollar idea?

    We need to get Ed Hardy or Kat Von D on it. I think some wild colors is what is necessary, especially on the tubing. I think they had neon ones back in the Oxygen bar days.

    Perhaps some Hello Kitty or Harajuku Girls, for whimsy.

    Glad you are breathing easier – and talking. That’s what counts.

    I hope more than I can say that the new chemo improves things.

    {{{{{{{{{{Sarah}}}}}}}}}}

  12. Jennifer said,

    Damn sister! Such an eventful week! You have been on my mind as I drive up the snowy highway to and from hockey camp this week. Hugs & kisses to you! I want to help. What can I do?

  13. Jennie said,

    Don’t really know what to say except that I’m glad you can breathe a little easier (and you’re done with long waits at the doctors…they’re a bitch!). You are one of the bravest people I’ve ever met (virtually, of course…). XOXO

  14. Betty Stout said,

    I follow your blog and think of you often. My prayers of healing go out to you. Spring soon in Boston. Stuff a bit of Lilac blossoms up R2D2’s nose!

  15. Recovery said,

    I hope things will get better for you 😦

  16. Kathleen said,

    Thank you so much for the update. I think about you everyday. I’m really not the praying type but I do put you in my daily intentions. That damn cancer factory told me to do a daily intention everyday so I do but who knows??!!!! As if you can just wish away cancer. It sucks that we have been dealt such a crappy hand. I too am so happy that you are breathing easier. Lucky that you have older kids. If I had the droid at my house, I think I would have to suspend it from the ceiling. There’s no way my slightly mischievous son would ever be able to not touch it. Hang in there sister. Your fans/friends are by your side whenever you need us.

  17. Kathleen said,

    Yup – I know, I’m probably really annoying – too much coffee this morning. But I just wanted to let you know about the weekend of hope in Stowe, Vermont. Registration is March 1st. I went last year with my sisters and it was great. I connected with an OVCA group that meets at Boston Medical Center. It is a wonderful and diverse group. If you want more info on the weekend of hope, feel free to contact me at:

    Kathleen_hanley_larson@yahoo.com

    cheers

  18. Sandi said,

    Recently I returned from a very healing place called the “Optimum Health Institute” in Lemon Grove, outside of San Diego, CA.
    I also have late stage OC.
    I feel what they teach there at OHI has slowed the spread of my cancer.
    You might just give it a try for a week.
    They are on the internet, look it over.

    Wishing you a speedy recovery, dear Sarah.
    Sending you love, light and joy.
    Sandi

  19. Sue Mellusi said,

    Challenge after challenge and you never lose your sense of humor and your tenacity…there are SOOO many things I LOVE about you. You are always on my mind and in my prayers.
    Love,
    Sue

  20. Denise said,

    Oh no. I will keep you in my daily prayers, for you are so strong. Your journey keeps me strong. Hang in there. Why doesn’t this dreaded illness give up?

  21. Sandi said,

    Hello Sarah,

    It started out on the Inspire Website, topic “IP vs IV” drug infusion choices.
    As the discussion progressed, that led me to “Functional Tumor Cell Profiling Assay”.
    Greg Pawelski, a frequent contributor to Inspire discussions has written several articles regarding assay testing on “Cancer Focus” website.
    And now the following contribution within the Inspire discussion “Expensive functional cell analysis vs. Taxol/Carbo”
    No doubt you have reviewed everything, but just in case…

    By gpawelski
    Reply 836593
    April 17, 2010 at 1:23 am
    Report post
    Like Rational Therapeutics and Weisenthal Cancer Group, Precision Therapeutics (Pittsburgh, PA) tests cells from excised tumors against a panel of chemotherapy agents, singly and in combination, through the company’s ChemoFx assay and analysis algorithm.

    Precision published data in early 2006 demonstrating ChemoFx’s ability to predict drug responses in ovarian cancer. Patients whose cells were classified as “resistant” to chemotherapy averaged nine months before their cancer progressed. Those in the “intermediate response” group averaged 14 months to progression, while those found to be “sensitive” to chemotherapy remained stable up to publication of the study.

    ChemoFx enjoys patent protection, not to mention coverage by Medicare and more than 400 insurance companies. With a course of chemotherapy costing tens of thousands of dollars (and no money-back guarantee), insurers may view a bill for testing a panel of medicines (at $450 per drug) against specific tumors as a bargain.

    Precision participates in a number of clinical trials, including one large cooperative group trial examining the predictive accuracy of ChemoFx. (Gallion H. et al (2006) Progression-free interval in ovarian cancer and predictive value of an ex vivo chemoresponse assay. Int J GYN Cancer 16:194).

    On the battle ground right along with you, Sarah.
    Surrender not!!!
    Sandi

  22. Sandi said,

    Oops! The first discussion I read on “Inspire” was entitled “IP Chemo Article: Why, Who, What, When, Where”

    The discussion eventually works into the subject of assay testing.
    The Functional Tumor Cell Profiling Assay Test really sounds like something worth trying when one slams into a wall where no drug works for long.

    Sending love, light and joy to you, Sarah.
    Sandi

  23. Jennifer said,

    Maybe your oc and my oc can get together and come up with some way to predict lottery numbers. Mine outsmarted gog 255 in 3 months. Now we’re praying it will be stumped by morab-003. If not, let’s take our oc’s on the road and try turn a buck with wild stories of lung goo and kidney stents. If I lived closer I’d decoupage that droid of yours and watch Bravo marathons w you. Hugs, Jennifer

  24. Esta Shindler said,

    Hi Sarah,

    I’m so glad Dawna gave me the link to your blog–at least now as I drive up the street each day and yearn to know how Sarah is, I can find out via this amazing connection you’ve created. Sarah, you have the most incredible spirit and sense of humor, infinitely more than those who are not asked to meet the challenges that you have. Stan and I are proud to know you and your beautiful family. We are cheering for you–here’s to your making it way beyond 60!!

    Hugs and wishes for the very best quality of life and a great trip to Maho Bay.

    Esta and Stan Shindler

  25. Beth L. Gainer said,

    Wow. What can I say, except that cancer really sucks, which we all already know. I appreciate your candor in this posting, and my thoughts are with you.

  26. Nancyspoint said,

    Sarah, Oh my gosh, I cannot believe all the stuff you are dealing with, but having to wait three hours, seems to me, should not be one of them! I understand how you did not want to see the canister appear in your home, but if you are breathing and talking better, then it’s worth it! After all, you have lots to say! My best wishes are sent out to you, Sarah.

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