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Lost weekend.

August 17, 2009

Well, it was a weekend of dealing with intense shooting jaw pain from the Zometa. I’ll have to talk with the doctor about that as it is a sign of osteonecrosis of the jaw — 0ne of the more painful and disturbing side effects of Zometa that isn’t supposed to show up for months and months and then only after dental surgery. Further, blood tests show that I now have high-normal blood calcium levels, which is new and yet another confirmation of cancer in the bones doing its nasty business.

To counter the jaw pain I took over-the-counter pain meds as encouraged by the nurse during chemo (Deb… she said that, right?). Unfortunately, she and I missed the part in the Zometa handout that said not to take NSAIDs, which are usually the only OTC pain meds that work for me. On the other hand, I wasn’t all that sharp during chemo treatment so maybe I missed something.

Zometa + NSAID = Irreversible kidney damage

Terrific. I  might have to ask one of you for a kidney.

Yes, I also have prescription pain meds that don’t interact with the Zometa. They make me vomit, though, so that’s yet another problem. I was never meant to take foreign substances into my body. Should have bought that goat farm years ago. Oh well. Too late now.

I spent much of the weekend lazing about and being generally useless (my new job), but managed a couple of walks and then naps afterward. We also went to the library book sale ($1.00/bag of books), which was fun; however, one book I got is the Weirdest Book Ever*.  I won’t mention its name, which is giving it too much publicity. Apparently lots of people like this book, so maybe it was just the chemo and my brain interacting badly with the book, or maybe not. It’s truly a profoundly disturbing book and I will probably start a fire with it this winter and hold some sort of  home-purification ceremony at the same time. Fahrenheit 451. In the words of Dorthy Parker: “This is not a book to be tossed aside lightly; it should be thrown with great force.”

Beyond that I was fairly disoriented a good deal of the time, a little bit unsteady, and lacking in depth perception (missed a stair here and there). I put this down to high-dose IV Benadryl, which they use to counteract any potential allergic reaction to the chemo addling my brain. By the way, I don’t recommend IV Benadryl as a recreational drug unless you’re into recreational napping and recreational falling down in front of people.

Right now I feel like the floor is made of the soft side of Velcro and the bottom of my feet is made of the loopy side (my brain is a little loopy too…). With every step it is getting to be an effort to lift my feet and move forward. This feels just a bit like I felt five years ago when my red blood cell count took a serious dive, so I’ll be curious to see what that count looks like on Friday when they take blood before they poison me again. And, yes, if a nap doesn’t help I’ll call the doctor today or tomorrow instead of waiting for Friday.

I am far far behind on emails, thank-you notes, and general social interaction. Please know, though, that I am overwhelmed by all your kindnesses and prayers. Continue to pray for a complete healing. Hank and Daniel and being champs. I couldn’t sleep for part of the night last night, and Daniel got out of bed and popped in to the office a couple of times to check on me. Nice kid. Hank’s getting some action in the job front, too, and is very busy with all the stuff that needs doing around here. I know he’s called a couple of you for specialized help and advice, so thanks to you for that.

I also need prayer to be able to concentrate long enough to take care of some administrative necessities like getting a list of benefits together for Hank so all he needs to do is make one phone call to work to set “things” in motion should that become necessary. I also want to get a whole lot of disparate loose ends together “just in case,” like photo albums, genealogies, life stories, etc. These things are really weighing on my mind and are very important to me — chemo robs me of the ability to concentrate, and remember though.

This morning I couldn’t remember where my own brother works. I had to look it up. That’s incredibly discouraging. He works for The Hunger Site, by the way. I wanted to add a link and did.

*I agree with this reviewer about the Weirdest Book Ever:

I read (NAME DELETED TO PROTECT THE INNOCENT) many years ago because it was gathering such brilliant praise. It is an appalling book. It is pornographic, disjointed, depressing and very, very weird. It reads like the drivel that comes out of women’s writing classes which is supposed to be so profound but is merely the meanderings of a mind steeped in Harlequin trash. It was written most probably on a filthy kitchen table while a pile of dishes fermented in the sink and a baby sitting in a high chair screamed his head off.

This book is not fit for the compost heap.

33 Comments leave one →
  1. August 17, 2009 10:34 am

    Seems like the last thing you need when you’re feeling weird is the world’s weirdest book to read. Bummer!
    I suspect that one day of NSAIDs with Zometa won’t cause permanent damage — that would take continued use. But if you ever need a kidney I’ll volunteer!
    Other than that, what can I do to help? Ask and ye shall receive.
    Love ya!

    • Jill permalink
      August 18, 2009 11:45 am

      Wow. Thanks for the kidney should I need it. Let’s hope I don’t. If anyone would be a match it would be my big sister.

  2. Debbie permalink*
    August 17, 2009 1:19 pm

    I don’t recall that Margo was very specific about what types of OTC pain meds to take. Maybe she just assumed everyone takes Tylenol. It might be a good plan for the future to have all your chemo drivers take notes for you. In addition to being in a stressful situation you are expected to remember a boatload of information – not all has accompanying paperwork as backup. I’m sorry I didn’t think of it sooner. Next time…

    • Jill permalink
      August 18, 2009 11:44 am

      Definitely. I had a notebook in my purse. I should have the nurse autograph what I write down too, just in case.

      I liked nurse Margo from Translyvania, but I think I’ll let her know about that NSAIDs.

    • Jill permalink
      August 18, 2009 11:48 am

      Well, certainly as soon as the Benadryl hit my system I was mental mashed potatoes for 36 hours. So, yeah, it’s good to have someone else to keep a beady little eye on things.

  3. Lisa permalink
    August 17, 2009 7:43 pm

    I have tried to convince my Dad to simply tape record each talk with each medical professional. I vote for a tape recorder!!! Plus, I’ve found few individuals on staff say the same thing.


    • Jill permalink
      August 18, 2009 11:50 am

      I have one, ya know? One I can hide in my pocket. I’m not sure if many of the medical professionals will want to be recorded. But we’ll see. Also, re-living a chemo session in full-on audio is almost more than I can grasp mentally. Ewww….. Kind of like listening to a car accident over and over. But, you’re exactly right about it being the best way to retain the information.

  4. Mom permalink
    August 17, 2009 7:46 pm

    Accountech is right, one day on the weird medicines probably will not hurt. Have the people write it down for you or repeat it several times. They should know instinctivly THAT PEOPLE IN THIS SITUATION WILL not remember. ‘Stupid nurses.” But, be aware that Accounttech is right!! Keep up the faith and believe that God is on your side and will not let anything happen to you for Daniel and Hank and Mom. Believe.

    • Jill permalink
      August 18, 2009 11:46 am

      Yes. Just one day won’t hurt, will it. I detoxed with some of Mark’s beets this morning.

  5. Mom permalink
    August 17, 2009 8:48 pm

    Sorry, I did reply earlier but it didn’t get posted. Accountech is correct in her observation that one dose is not going to harm you. Most everything is overload. Do it over and over and suffer the consequences. The note about taking notes is most appropriate too, Take a paper and pencil along or record the speaches. No one ever says the same thing that another nurse says. Have them write it down. It is fair to ask.

    • Jill permalink
      August 17, 2009 10:21 pm

      Hi, Mom. Your first post got delayed, but I like both of them!

  6. August 18, 2009 8:20 am

    Accountech is me: Kim. For some reason, it has decided to name me as my website. I see a logout button above, so I’ll try that, and then maybe I can use my own name when I post!

  7. August 18, 2009 8:21 am

    Get one of those digital mp3 recorders. Then when they try to weasel out of telling you to cross your painkillers with beer you’ll have ’em!

    By the way, do you get any pot to go with this treatment? If so, I’m sure I can remember enough from my high school days to assist.

    Did I just blog that out loud?


    • Jill permalink
      August 18, 2009 11:40 am

      You did blog that! For shame! But did you inhale?

      I asked the doctor about Marinol (?) — the pill form — once as a joke and he whipped out his prescription pad. I declined since it not only works on nausea, it increases the appetite and I was on steriods at the time. The steriods made Rex look appetizing if he held still long enough for me to grab and chomp.

  8. Mame permalink
    August 18, 2009 11:30 am

    Hey Jill,
    You know now that I simply have to see that book.

    I wish Iived closer so I could help you out. I know you have a lot of loving friends and family.

    I know! Do you need any tylenol with codeine? We have it OTC here and I’ve been known to send a few bottles here and there to American friends. 222’s are a popular choice.

    Note to the Customs people, the FBI, CIA, CSIS RCMP, I live in Greenland. No make that Iceland .. or was it Ireland. Ya that’s it, Ireland. :~)

    • Jill permalink
      August 18, 2009 11:42 am

      Wow. You and Dave better watch out.

      I have a prescription for “the good stuff” — Tylenol with codeine. It’s the stuff that makes me barf. Told you I’m a drug weenie.

      • August 18, 2009 12:30 pm

        That’s a pretty common reaction for Codeine. What about the morphine-based drugs? Never mind, I just looked it up, and Codeine is a methyl-morphine. 😦

      • Jill permalink
        August 18, 2009 12:50 pm

        I’ve learned after years of migraines to seek out my “special place” and zone away from the pain if possible — doesn’t always work when someone’s hammering nails into your jaws. Oh well!

      • August 18, 2009 7:16 pm

        Again, if the label says “May cause drowsiness” that really means “Take with Beer”.


      • Jill permalink
        August 18, 2009 8:19 pm

        Beer. Of course. =)

      • Jill permalink
        August 18, 2009 8:29 pm

        (What it really means is “take with beets,” but I didn’t want to make Dave sick.)

  9. Lisa permalink
    August 18, 2009 12:52 pm

    My Dad’s Doctors got tired also having to regurgitate information, so they also volunteered to write out specific instructions. We are all stressed when sick and the most stressed is the ‘patient.’ I’d just tell them that I need very specific instructions. I know easier said then done as I recall many memories in doctor offices.

    But you could bring a pen and paper and if they don’t want to do that, ask them to speak into the tape recorder 😉 Bet they pick the pen and paper *grin* I wouldn’t want to hear any of it more then once either, but I wish someone had told me that trick when I was dealing with my son’s doctors.

    Does the hospital on staff have a social worker or counselor? I hope so!!! Maybe they can help the medical professionals understand you need clear instructions and assistance (thus hand them a pen and paper, which is what they finally did to my Dad’s doctors).


    • Jill permalink
      August 18, 2009 6:22 pm

      Hi, Lisa. Yes, the hospital does have a social worker and she popped in to see me when I had the Frankenstein thingy on my head for the brain surgery. Maybe she just wanted to see me at my worst! I think Hank has her card. It’s a good idea to have them remind the nurses to make sure I’m writing things down — preferrably before they drug me. Or, after they drug me, that my driver is writing things down.

  10. August 18, 2009 3:36 pm

    The ONLY prescription pain med I can take is Vicodan, the others make me very very ill, so try a few before you give up on them.
    Or just eat more beets 🙂

    • Jill permalink
      August 18, 2009 6:06 pm

      Well, Vic makes me sick too…. hmmm…. I’ll ask for something else to see what they have up their sleeves. Beets are good too. I found a way to freeze them. 🙂 Froze the beans today too. Now I’ll get some recipes together for Chiles Relleno. We ate one of your tomatoes today that looked like a solid seedless watermelon inside — very very red and yummy.

    • Jill permalink
      August 18, 2009 6:08 pm

      Or we could go with the 10-minute soak of the head in a bucket of water, which Dad said would cure anything.

  11. Lisa permalink
    August 18, 2009 10:12 pm

    Sometimes you could just dunk the average social worker’s head in water for 10 minutes and all will be solved *grin*! But if you tell them that, they do get mortally offended 😉

  12. Amers permalink
    August 20, 2009 2:08 pm

    Ugh, count me in as another who read that “Weirdest Book Ever” a few months ago. Blech. I only wish I could go back and un-read it, like a way to scrub it from my brain. Actually, there are several books I’d like to un-read like that. I’d mention them here, but someone might accidentally go out and read them.

    • Jill permalink
      August 20, 2009 3:20 pm

      Horrors! I’m sorry you had to go through that torture. There’s a special place in h-e-doubletoothpicks for that author.

      Having a rinse option on the brain is a good idea.

    • Jill permalink
      August 20, 2009 4:31 pm

      Come to think of it, that rinse option’s not a bad idea. I know more than one person who would rinse Lord of the Flies. I never had to read that for school, but I’d certainly like to rinse out more than one novel by Camus. Faulkner also gives me the flamin’ fantods (lots of people disagree with me, of course). I’ll work on that brain rinse thingy when I have a chance.

      • August 20, 2009 4:56 pm

        I think it was in 1980 that I worked with a gal named Kristi, who was younger than me, and I was pretty young in 1980. 🙂 But Kristi was a very “experienced” person. She said she wished she could forget half the stuff she’d done. Her favorite line from a song says it all: “wish I didn’t know now what I didn’t know then” (Bob Seger / Against the Wind).

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