Monday, November 21, 2016

Chicago Here I Come! - HSCT Update

I am just going to begin with the disclaimer that this will be my last update for a long while. This Friday, as in four short days from today, I leave to begin my Stem Cell/Bone Marrow Transplant process. The actual transplant will not be until December 29th, however; there is a month long work up before a transplant can begin. A patient must mobilize, create, and harvest their stem cells which is a long, and painful process. To learn more about this process please sift through a few of my older posts from the months of August - October!

The actual transplantation process is about a month as well, so my entire journey (if all goes according to plan) will be right around two months. As I do not see myself typing daily updates during this time, I will be creating video diaries of the entire process. My goal being one video a day for the entire two months. Please understand that goal may be completely ridiculous - and not happen! lol ;) However, I will do my best! If that goal falls through, I will be doing once a week updates here on the blog! The videos will be streamed live from my Facebook page found here: The Tube Fed Wife It may end up being both if I am lucky! So check here, and my Facebook page for updates just in case! Also, please note, I will not actively be replying to messages, or comments during this time! Thank you for understanding!

I have had many people ask for an address to send small care packages to -  up until the actual transplant process (December 29th) I will be in a hotel and not inpatient. Please hold all care packages until that time. After December 29th I will have a room number care packages can be sent to. I will have a Facebook Event Page detailing the address, and what can be sent. The transplant wing has very strict rules on what can, and cannot be sent since the tiniest of germs could kill a patient undergoing a transplant. Things like flowers, or any live plant are a HUGE no, as are homemade snacks! This page will also detail visiting rules and regulations.

As for a short health update - being off immunesuppressors while gearing up for the transplant over the past two months has reeked havoc on my body. All my physicians at this point have been very worried during my appointments, stating I seem to have declined pretty severely in the last few month. My breathing has gotten increasing worse, my joints have become incredibly stiff, and my stamina has become non-existent. My physicians seem to be just as excited as I am at the prospects of this transplant!
I have managed to do some very thorough Bucket List work in the past few weeks though! As the transplant approach, and all the uncertainty it brings, I decided I really wanted to knock off a few big items! I had the opportunity thanks to a wonderful wish granting foundation (Photo Below) to meet my favorite band, I spent a wonderful few days in Southern California, and New York during my last two last speaking engagement, received my fist pair of acrylic nails which I adore, I had my hair dyed lavender, and I even had the chance to protest for a cause I believe in! All the photos for these events can be found on my Facebook page!
I also filmed a short documentary with the incredible team at Project Scleroderma - a non-profit dedicated to sharing the raw journeys of patients battling this deadly disease.


Emotionally, I am having a bit of a rough time with the reality of this tasking process. I am worried - to say I wasn't would be a lie. I think the hardest park of this whole experience will be the length though - I am naturally a homesick person. I get emotional after two days away from my husband and beloved kitty! lol So two month is going to be a stretch for sure! We plan to Skype everyday so hopefully that will help ease my homesickness. Thank you as always for all the support and kind messages, comment, and posts I receive, they brighten my day!

I hope everyone enjoys their Thanksgiving!

12 comments:

  1. Dear Chanel,
    I wish you all the best on this journey and send you healing hugs, every minute of every day! Love you lots and great energy for these next two months.

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  2. I wish you all the luck in the world Chanel. I have been saying a prayer for you every day since we met in KC. I hope your new stem cells will have the kick ass mojo you need to show scleroderma who is boss. You are such a bright star we are all pulling for you.

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  3. Sending you lots of Love, Chanel! -Sherry Grajek

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  4. As I said before your last trip to Chicago, Chicago will take care of you! Good luck to you...sending positive thoughts to you as you take this journey

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  5. Good Luck. Every Day I will say a prayer. Thinking of you . I know you can do this.





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  6. If anyone can do this, it is you. You have the strength of spirit like no other. God bless you and remember to breathe. You have my Love and admiration.
    Be well my friend, Kevin Hodack kjhodack@gmail.com

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  7. Praying for you Chanel!
    God Almighty is with you every moment. His love never fails! <3

    So do not fear, for I AM with you,
    Do not look anxiously about you for I AM your God.
    Surely I will strengthen you,
    Surely I will help you,
    Surely I will uphold you with My righteous right hand. Isaiah 41:10

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  8. Hi Chanel,
    Wishing you all the best during your transplant work-up and treatment. May your time away from home be as comfortable as possible and you receive every benefit that this treatment can offer. The video diary etc. sounds like a great distraction from the rigours of treatment. While I may not be the most regular correspondent on your blog, you will be in my thoughts and prayers at this time.
    Jodie
    (also an mctd sufferer)

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  9. Hi chanel, thinking of you during this exciting time of your life. We're sending prayers your way for strength for you to get through this awesome journey! We will miss you, but our hearts and love are close by and thinking of you and sending positive energy your way. Have a nice christmas. Love, Wendy, Bailie Blake and Alicia. ❤❤❤❤❤

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  10. Praying for you Chanel!
    God Almighty is with you every moment. His love never fails. Good Luck

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