Great News!

Written by JKM on September 4th, 2008

First things first. I’m still in remission!! I finally got my bone marrow results today (from the aspirate done on Thursday), and it looks good!!! My counts started coming up on their own. Monday my white count was 2.43, neutrophils 1.26, hemoglobin 10.9, hematocrit 32 and platelets 100,000. Woohoo! I mean, I have lots of room for improvement, but I’m happy with those! I firmly believe the red wine I’ve had the last several nights has helped my hemoglobin and hematocrit…red cells AND red wine…all that red? Coincidence? I think not! Also, I’m looking forward to plucking my eyebrows now that my platelets are high enough! Oh, and PS, my cholesterol was 132….aren’t you proud, Dad?

I haven’t gotten the results to my spinal tap from yesterday, but the procedure went well. I’ve never had one before, and the only part that felt slightly uncomfortable was when she stuck the needle in to numb up the area. Today I had a MUGA scan to look at the function of my heart (which looks good!–within normal range), a CT scan of my pelvis, abdomen and chest (for one of the research studies I signed up for), a gynecological appointment (always fun! hahahaha), a meeting with my pharmacist, a meeting to have dental X-rays, AND a meeting with my nurse, Jackie and physician’s assistant, Pam. Wow…I feel tired just reading about all that. I had a busy day!!

The appointment with my pharmacist was much more intimidating than I anticipated. She gave me a huge container for my pills (maybe 10″ long and 5″ wide), so I can organize them every week…it looks like something you’d give someone who can’t see very well. Then she started describing all the meds I would be on. I knew there would be a lot, but I was certainly not prepared for everything she told me. She had a binder that included the actual pill and then a description about how and why it’s used in the transplant process. Well, when we got to one of the pills, the mother of all pills (Cyclosporin), I got even more scared. It even looked sinister. Each huge gray pill is packaged separately in foil wrapping. Once you unwrap it, you must take it before two hours pass or it will disintegrate in the air (um, whaaaaaat?!). There are many possible side effects, one of which is a really bad headache…but when she says “really bad”, she means dizziness, blurry vision, tingly fingertips…things I definitely don’t want to experience!!! I know, keep thinking positive thoughts, and I am, but when you’re overwhelmed with information and possibilities, it takes a while to reorganize everything in your head so you can look at it with a clear mind. Oh, and another thing with the meds….some of them must be taken on an empty stomach (with one of them you shouldn’t eat anything within two hours of taking the pill), and others say you should take them with food! It’s going to be interesting.

Speaking of food, I wasn’t allowed to eat before my first couple appointments this morning because of the scans.

I did however, enjoy the wonderful barium drinks (two big ones!) within an hour…the contrast highlights certain parts of the body when they do the scan. Let me tell you, that “berry smoothie” as it’s described on the bottle, is no smoothie! Have a look at the pictures I’ve included, so you can more accurately understand what it tastes like…a picture’s worth 1,000 words, right?!

OK, well I’ve got a pretty irritating headache (but no worries…I’m not dizzy or blurry-eyed or anything!), and I’ve had a long day (I think that’s why I have the headache!), so I think I’m going to get ready for bed. Hope everyone is doing well!!

Love ya.

6 Comments so far ↓

  1. Sep
    4
    9:36
    AM
    Katie

    Are you going to put up a photo of the Cyclosporin? :o) Sounds like a lot of information/appointments for one day–I still can’t get over how organized and thorough the Hutch is!

    Love ya!

  2. Sep
    4
    2:05
    PM
    Nori

    Hi Julie! This was one heck of a busy day for you, but so glad to hear you’re doing well! You’re such an inspiration, and plez know you’re in our thoughts everyday with much love! Hope to come see you in Seattle soon! Nori Nakamura

  3. Sep
    4
    2:08
    PM
    paloma

    Ok, I know that the Cyclosporin is “sinister” sounding, looking, acting.
    However, how futuristic is it that it disintegrates within 2 hours.

    That is INSANE!

  4. Sep
    4
    2:50
    PM
    Laura (AKA the donor) ;)

    Hmmm…disintegrates? That sounds suspect to me. I’d like to test that theory when I come back out there in a few weeks, because it sounds made up to me. And I deal with liars on a pretty regular basis at my “office” ;) Really does seem weird. :) Happy to hear your Bone Marrow & Spinal Tap both came back clear! :) Good news! Miss you (and Mom), looking forward to getting back out there in a few weeks. (Don’t pretend you’re not counting down the days until I’m there again) ;) Love you, Laura

  5. Sep
    5
    6:05
    AM
    Andrew Colletti

    Here’s a link to a photo of Cyclosporin capsules. Look like little submarines. They are huge, but they make up for it by smelling bad :-\ But it was just another pill for me after a week or so…

    http://www.drug3k.com/img2/neoral_11082_5_(tb)_.jpg

  6. Sep
    5
    6:08
    AM
    Andrew Colletti

    …that link above didn’t render well. Here’s another photo:

    http://www.cambridge-transplant.org.uk/drugs/cyclosporin.jpg

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