Day Three: What’s Hair Got to do With It?

4 Oct

Dust has settled a bit on our good news from yesterday and I want to address a topic that I got asked about from time to time before we left: hair loss.  Phoebe and I will lose our hair with this treatment.  This is something she and I have discussed at some length, and I want to share some of my thoughts here.

I think patients like Phoebe and me have a whole different view of the hair loss than most cancer patients who undergo chemotherapy.  I have a dear friend who had breast cancer and underwent chemotherapy.  Her only symptoms prior to chemo were that she had noticed a lump in her breast.  For her, she went to the doctor one day with a question, and was hairless six weeks later.  For her, hair was the first thing cancer took from her, so it was a big loss.  On the other hand, MS has taken a lot of things from me for many years and my hair will be the last thing it takes.  That feels a bit empowering.  

I spent many years wondering what the last thing would be that MS would take, and now I know.  I know that it is NOT going to take my ability to walk, speak, feed myself, use the toilet properly, perform on stage, memorize bulk scripture, or any of the hundreds of possibilities.  The last thing MS will take from me will be my hair and I am more than happy to let it have it on its way out the door.

Phoebe and I are trading locks of our hair.  I will take her hair from her former life as an MS patient back to Texas and bury it in my yard and she will take mine back to the UK and bury it in her yard.  She is about a week  ahead of me, so I already have locks of her hair ready for burial.  Eric will be giving me a haircut before I go into isolation and I will give her mine then.  This is not a sad thing for either one of us.  We feel wicked fabulous about it.

On Friday night at 11pm, I will begin injections to mobilise my bone marrow stem cells.  I will receive these injections at 11pm and 3am for four days.  After this, I will be hooked up to the apheresis machine (made in the USA!) where my bone marrow stem cells will be collected.  Once that is done, I will rest for a day or so before beginning chemotherapy.

I intend to continue daily posts, even if I have nothing to report beyond how I am feeling.  I cannot begin to respond to every comment between here and Facebook, but I read each one and am encouraged immeasurably.  Thank you for your continued support and prayers.


11 Responses to “Day Three: What’s Hair Got to do With It?”

  1. Ronnie Patterson October 4, 2012 at 12:30 am #

    Amy, You have always been a girl to wear a hat!!! You have always been a girl to provide lots of entertainment for others. You have always enjoyed wearing costumes!!! This will be a new costume for you to wear. It will be an “I am MS free, so look at me. I am hair free.” If you can maintain your sense of humor that God blessed you with, you will fly through this. Love you sister!!!

    • ericswife October 4, 2012 at 4:16 am #

      That is pretty much how I see it, Ronnie! I understand why hair loss would be traumatic to some people, but I think that, because it signals the end of my fight and not the beginning, it is easier for me to embrace it for what it is. Bald can be pretty beautiful. 🙂

      • Ronnie Patterson October 4, 2012 at 1:45 pm #

        Amen. I should have written it the other way around. I am hair free because I am MS free. I can’t wait to hear those words. I am so very happy that you are in Russia getting rid of MS. Here’s to celebrating a huge homecoming. Yes bald can be very beautiful!!!

  2. Linda Luckstead Benskin October 4, 2012 at 3:52 am #

    We need to get that thermometer up to $80,000 before you get out of isolation. Come on, Ninja fans, let’s get this done!

    • ericswife October 4, 2012 at 4:16 am #


  3. Janan October 4, 2012 at 7:09 am #

    Please know we Christians here in el Reno, ok, are praying for you! Your courage and attitude are such an inspiration. I look forward to hearing from u each day!

    • ericswife October 4, 2012 at 8:29 am #

      Thank you! The constant prayers are what has made this all so smooth and almost effortless to maintain a good attitude. 🙂

  4. FergsMouseTrips October 4, 2012 at 8:31 am #

    Losing your hair is like wearing a medal — it is a badge of honor to the world that you are winning this fight!

  5. Janette Scarborough October 4, 2012 at 8:52 am #

    I lke that thought about losing hair being somewhat “like wearing a medal”… a medal for bravery and faith. Wear it proudly Amy!

    • Janette Scarborough October 4, 2012 at 8:53 am #

      P.S. I hope you are journaling because I see “best seller” here.

  6. Wendy nash October 4, 2012 at 9:19 am #

    Having been through the HSCT for CIDP already (5 months ago) my hair is just beginning to grow to a length I don’t have to wear a hat or scarf. I didn’t care either that I lost my hair, I actually was looking forward to it! It is very liberating and not having to worry about “bed hair” when you are not feeling well is a bonus! I used the scarves (as they received a lot of compliments) as a jumping off board to talk about the HSCT for many auto-immune diseases that it can cure and then also about my faith! I actually typed up a paper I hand to folks with the different diseases (Dr Burt in Chicago) treated with the HSCT!
    It is so worth all the difficulties you may have to deal with Amy! To be rid of MS is going to be wonderful! In your life, maybe 3rd or 4th best thing ever….after your Savior, husband and kids, would be my guess! God bless you through this whole process. As He was with me through mine, it was one of the most special times I’ve shared with Him!

Honest Truth About Me: I'm going to need a lot of cheer leading to see this through. Your comments and encouragement mean the world to me.

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