Hooray done with Cranial Spinal Radiation

by michelle
Tuesday, November 11, 2008 - 10:24 pm · 8 Comments

The ‘roids really kicked in on Sunday and I’ve been feeling pretty good (like good enough to break out a smile good). I’ve been keeping all of my food and fluids down too. Today, I just have a bit of heartburn which I heard is common from this kind of radiation.

Tomorrow, I start Fludarabin as an outpatient. Word on the street is that it’s a pretty well tolerated chemo. It’ll be a short break before what’s to come on Thursday. I’m getting admitted into the University of Washington transplant floor to start two days of Cytoxan. I’ve heard scary things about this one, but I guess if it can wreak havoc in my kidneys, mouth, liver, etc., it’ll be powerful enough to get rid of the cancer cells in my bone marrow once and for all and create a comfy space for my new stem cells to set up shop and flourish in.

On a side note my cord transplant doctor sent me a nice update, “Hi Michelle, Wanted to let you know that the stem cells are growing very well. We will be expanding them today - in other words, they will be put into 30 large flasks from 15 little ones. This is good and they are growing at a pace that I like!” Just what I wanted hear…grow baby grow!

Today, we had an appointment to learn about my inpatient stay. During the 2 Cytoxan days, the nurses will wake me up every 2 hours to pee so the toxic chemo won’t sit in my system. Whaaat?!? I thought I was going to get my beauty rest and sleep 20 hours a day. I was surprised to learn that transplant patients keep very busy. Aside from the doctors and nurses doing blood tests, checking vital signs, and poking and prodding me throughout the day, there are 3 things that I can control when I’m in the hospital: 1. Saline rinses every 1-2 hour to help alleviate the mucositis in my mouth, 2. Walking around the hospital floor to exercise my heart and muscles, 3. Deep breathing exercises (10 deep breaths, 10 times a day) to prevent pneumonia in my lungs. Sounds like a piece of cake, huh? Apparently, it’s not as easy as it sounds. I’m going to be tired, nauseous, in pain and drugged out.

My plan is to rely on my family to keep me on task. I can become quite stubborn when I’m in pain, but my mom has a way of convincing (bugging) me to do things. She’s flying in tomorrow. Speaking of family, Van’s sister Agnes from Spain is helping us out for a month or so. She’s brought positive energy and motivation into our little apartment. She’s gone Amazon.com happy and ordered many books about nutrition and cancer. I’ve been wanting to incorporate better nutrition into my diet and I’m extremely thankful that she’s here to do the research and food preparation. My sis Melanie was also here this past weekend. Sisters are the best caregivers. She just knows what I need, doesn’t get on my nerves and can make me laugh. I’m glad she was here during the first rough days of radiation. I’m going to miss her. And then there’s always my constant, Van. He did a great job on my dressing change on my new catheter today despite the stress of doing it for the first time.

I am also going through major Marshawn withdrawal. I miss my yorkie so much. I think he’s a bit depressed too (hahaha..I know I’ve become one of those dog owners). He’s gained 20% of his weight since I’ve left (just 3 weeks!). All he does is eat these days.

This post is a big fat jumble of random sentences. Keeping things short and concise is tough. Plus I hope these blogs will help other patients. I’m going to end it here. Will try to keep you posted. Much love!!!

p.s. Donielle, my coworker, is 30+ days out of her transplant and her stem cells have engrafted. I was so happy to hear her voice today when she called. She has some GVHD, but it seems like the doctors have a handle on it. She sounds fantastic.

Tags: Medical Update

8 responses so far ↓

  • 1 huy // Nov 12, 2008 at 4:30 am

    Thanks for the update.

    Wish I was there to give you support

  • 2 carol // Nov 12, 2008 at 7:26 am

    lots of praying… keep the strength. and if you don’t have the strength, lean on all those who love you. smiling is good!

  • 3 Hannah // Nov 12, 2008 at 8:57 am

    Woohoo! Thats awesome to hear that you got through all the radiation. We miss you Michelle! Love you and sending lots of positive energy :)

  • 4 Minnow // Nov 12, 2008 at 11:37 am

    Hi Michelle,

    I heard about your story on Facebook and thought I would look into it further. I’m a cancer survivor of Acute Promyelocytic Leukemia (APML) and am now 24 yrs old. As a young cancer survivor I am always wondering if there are folks like me… and unfortunately there are. I was diagnosed when I was 16 and have been clear of it since Jan 2001. APML didn’t require me to get a bone marrow transplant, but it also means i’m unable to donate as well.

    i know cancer can seem like a long and forever process and the worst part about it is not being able to live our lives the way we want to. I found inspiration from the younger patients at my hospital - Like the bald 5 yr old girl in a mask who always seemed to have the energy to jump around in the waiting room.

    And I still do, now that i just finished radiation treatment for a new cancer diagnosis (mucoepidermoid carcinoma - a tumor in the parotid gland). It’s apparently, completely unrelated to my APML since i never got radiation for that. But I’m done with treatment so i’m happy for that… but it seems that we have matching masks! At least they cut holes for your eyes and mouth. :] hang in there and let me know if there’s anything I can do for you.

  • 5 qhv // Nov 12, 2008 at 5:04 pm

    Thanks for the update! You have such positive energies despite what you’re going through. Only if more “normal” people were like you. The world would be a happier place.

    Because of your great inspiration to me, I am working on organizing an Asian marrow drive here in the midwest. I hope it’s successful and an ongoing process here!

    My prayers are with you as always.

    ^^V

  • 6 Bryan C // Nov 12, 2008 at 7:21 pm

    great to see your beautiful smile in that pic on the couch!

  • 7 jenn yee // Nov 12, 2008 at 11:51 pm

    hi michelle, dont worry…i have been one of THOSE dog owners for a long time. heeheh :) ttys!! keep smiling!

  • 8 Carol // Nov 14, 2008 at 9:12 am

    Thanks so much for your updates Michelle. (Thanks also to Van, Mabel, and the Project Michelle team!) Keep the posts coming. :) I really appreciate being able to stay connected with you through them.

    So pleased to hear about your stem cell growth and Donielle! I know this isn’t a real substitute, but maybe you can get a yorkie stuffed animal while you’re away from Marshawn? I hope you can get some power naps in between all your activities during Cytoxan days. Stay positive, do a little dance, and keep your head up. We love to see you smile!

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