just say no

It seemed like the minute I stepped on the plane home on Sunday (Frankfurt to LAX, flight time 11 hours) was the minute that my tumors registered they were being attacked by the treatment I had six days prior.

I was in pain. I ate-I threw up-I felt nauseous-I didn’t eat-I threw up anyway. The flight attendants kept asking if there was anything they could do (we have motion-sickness medication), while gingerly trying to think of excuses not to have to handle my vomit bags. I had my entire anti-nausea arsenal at the ready, but those drugs only work if they want to work. I slept as much as I could. It was miserable.

The only redeeming factor of throwing up the whole ride home was when were finally on solid ground and homeland security tried to take me into a little interrogation room because I was setting off every radiation monitor on the premisses, the officer looked warily at the vomit bag in my hand and told me to sit back down.

Over the past three days the nausea hasn’t gotten much better, except for a brief infusion of Zofran on Monday that was supposed to “break the cycle.” I ate dinner that night. I haven’t really eaten anything since. Thank goodness for TPN. Thank goodness for sleep, the only time when I don’t throw up.

Desperate, we saw my backup oncologist yesterday who tried to get me a standing appointment at the infusion center for fluids and more IV Zofran until this passes. He wasn’t successful yesterday so he called over to the ER and told them to fit me in for a quick hour-and-a-half round of fluids, anti-nausea meds, and labs. Naively we believed him.

I answered all the triage questions with little detail, saying repeatedly, “My doctor just called over here. It should say what he wants in the computer.” I was sent out into the waiting room to wait for a bed.

I got a bed after 30 minutes or so. I was given a hospital gown “for easy access to my PICC line,” and left with the instructions to get into it and wait for the ER doctor. I tried to argue about the gown. “You can access my PICC line from under my shirt sleeve if I take off my jacket–see?” The nurse grumbled. “OK so we’ll just get some labs, wait for them to come back, and then see what we’re doing.”

It sounded pretty simple, but the truth dawned on my whole family at the same time. You can’t just go into the ER with an order from your doctor and get IV fluids and anti-nausea meds. If your labs say you need potassium, you get potassium. If your labs say you need iron, you get iron. My labs are far from perfect. Also, no matter if you just think this nausea is a side effect of the treatment you just had in Germany. No matter if you have spent the last 2.5 years trying to get some doctor to “fix” the nausea by finding out what’s causing it to no avail. This ER doctor might think he can be the one to figure it out with a CT or a brain MRI or a freaking endoscopy (which I have spent 2.5 years successfully avoiding).

I already had an appointment at the infusion center the next day, and more than anything I wanted to sit on my couch at home with my pillows and stuffed animals and heating pads. Drinking tea to turn off the nausea switch in my throat. Dozing and watching TV shows. More than anything, I did not want to spent the next 5 hours at the ER pulling around an IV pole every time I needed to go to the bathroom. I could endure another night of not eating, feeling nauseous, and vomiting, and I would go to the infusion center the next day where my stay would truly be only one and a half hours.

I said, “No, thank you.” Put my jacket back on. Walked out.

It was the second time in a week I have said no to a doctor, and maybe the second time ever. I put my foot down once in Germany too. Every other time I have been to the ER (or to the hospital for that matter), I have been a very dutiful patient. I get annoyed at how long everything takes, but I do it. It’s the price you pay to feel better, right?

I have been sick for almost three years now. I am tired of being sick. Tired of everything medical. Tired of waiting long hours in healing places to not really feel that much better. I was just sick in Germany for 10 days. I like being at home in the States. No matter how bad I feel, I feel slightly better at home. So I exercised my rights as an adult, ignored the nurse reiterating how sick I am, and said no.

Interestingly enough, I actually felt slightly better today. I skipped my infusion center appointment too. I took a long nap. I ate more for lunch than i’ve eaten in the past week–and I enjoyed it. My nausea switch was turned off almost all day. Maybe my nausea just needed a firm “NO.” Maybe my pain will respond to the same.

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11 Responses to just say no

  1. Mary says:

    You go girl!
    Mary-Pittsburgh

  2. Matt says:

    That had to be the worst 11 hour flight of your life!

    I have been “uncomfortable” on a 4 hour flight. If I
    added nausea & pain to it I think I would go mental!

    I do appreciate the tip about nausea bags discouraging
    the homeland security.

    Not that I mind the strip search…it’s hard to find anything
    “FREE” anymore.

    But you never know when that helpful hint might just
    come in handy!

    (Note to NSA–That was a joke)

    Glad to hear that you are home.

    Glad to see that you can say “NO”!

    Sending prayers & warm fuzzies your way.

    Warm fuzzies are good for nausea…it’s a proven fact!

    Stay strong, Brave woman!

  3. Debbie says:

    Goodness what an ordeal! Glad today was a better day. I think you have cracked the system….if it isn’t working for you just say NO! Here’s to lots of better days for you!

  4. Matti says:

    Lindsey, more power to you! I’m so glad you were able to take control and do what you feel is right for you. It’s so true – just say no and take control :). And continue to feel better!

  5. Cathy says:

    Lindsey…you are empowered . What a powerful word “NO” is and often so hard to use when one thinks someone knows better. You listened to your body and your spirit and it responded to you taking control. A huge hug and lots of love and prayers coming to you. Good to have you home!!!!!!!

  6. Jon Palmer says:

    Go and get some low THC, high CBD marijuana and use that in a tea, it worked great for my grandma, also had the odd side effect of reducing the size of her tumor, huh, go figure.

  7. zdejesus says:

    I’m so proud of you, Lindsey. I really hope you feel better and find comfort in being home. Big hugs and lots of love, Z.

  8. I’m so sorry to hear about your trip home and the side effects. And so happy that you’re feeling better after saying “NO”. It’s so hard to go against the ‘professional’ advice, but sometimes you just have an instinct of what’s best…like your own bed, stuffed animals and being home. Thank you for sharing your ups and downs with us. You help so many people by being so candid. Hugs to you!

  9. Coral says:

    Sending love and healing mojo to you…

    from a fellow zebra

  10. KELLY says:

    HOME IS SO MUCH BETTER THAN HOSPITALS AND ERS. I WAS ONCE TOLD THERE IS A TIMEZONE ONLY THE CHRONICALLY ILL KNOW ABOUT AND IT IS THE PROFESSIONAL MEDICAL TIMEZONE. SOME EXAMPLES I WENT IN FOR OUTPATIENT SURGERY ENDED UP INPATIENT FOR A WEEK, MY DOCTOR WANTED AN IN AND OUT CATH , BUT IT WAS IN 48hrs. NOT TO MENTION GETTING MEDS ON TIME, NURSES ARE SO BUSY AND VERY RARELY DO THEY GET THEM TO YOU ON TIME AKA WHEN NEEDED. AT HOME YOU HAVE CONTROL, YOU ARE NOT WOKEN UP EVERY 4 HOURS. YOU CAN GIVE YOUR MEDS ON TIME AND YOU HAVE YOUR BED!
    NAUSEA/VOMITING: MY INFUSION COMPANY GIVES ME A 32ml (16mg) PREFILLED SYRINGE OF ZOFRAN TO PUT IN WITH MY 3 LITERS. IT HELPS A LITTLE, BUT I DO MY TPN OVER 16hrs SO IT REALLY IS ONLY 1ml/hr. IT HELPS (NO PUKEY PILLOWS LATELY–SORRY TMI). YOU MIGHT CHECK INTO THAT. . THERE ARE TIMES WHEN SLEEPING IS THE BEST ESCAPE I WAS 238 POUNDS WHEN I STARTED PUKING I GOT DOWN TO 102 ON TUBE FEEDS WITH TPN AND 4 LITERS FLUID DAILY (A BIG HELP 1 LITER =2.2 POUNDS) I’M AT 134.
    GOODLUCK ON YOUR RESULTS! ON STOPPING NAUSEA OR AT LEAST PUKING.
    DO YOU HAVE TO GO BACK FOR MORE TREATMENTS. AND NEXT TIME YOU SEE THE CARDIOLOGIST TELL HIM TO ORDER IT THROUGH YOUR INFUSION COMPANY AS A STAT ORDER. (SORRY SO LONG & CAPS ARE VISION RELATED.

  11. Mike says:

    Thanks for the update! Please stay strong! We are praying for you Lindsey!

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