Delay

8 Apr

My donor-ette and I had our first little squabble yesterday. My Be The Match coordinators presented her with two possible donation days: April 27 (my docs changed this to choice #1 since my last post) and a backup of May 4. She said she couldn’t donate until May 11 at the earliest. She has a big personal event in this timeframe, and of course we need to respect my donor-ette’s schedule. “That’s just the way unrelated volunteer donations go,” said nurse practitioner Julia.

I know she’s a volunteer donor. And I know this is a huge good deed of her. I’m thankful. Really, really, really I am. But sitting anemic at home, I’m sick to my stomach that this MDS will turn into the way more serious AML. It’s nerve-wracking to wait.

My mom tried to work her social worker magic, but Be The Match has their rules, and for good reason. All my donor-ette knows is that I’m a 24 year-old woman with MDS and the need is urgent. I just wish that “urgent” translated to sooner than a month from now.

But there’s good news:

  • I got the results of my bone marrow biopsy and there has been no change since my biopsy in mid-February. I guess this is the news that really matters if I can cloud out the above. Maybe if my MDS is indeed slow-moving, a week of dress season will be good. (I’m very upset that my bubble-boy time will take up almost the entirety of dress season.)

Also, I’m feeling a lot better since I received two units of red blood cells Wednesday. My hemoglobin had fallen to 7.4, so even walking up the stairs to my bedroom was difficult. But now, with two bags floating around inside me, I’m well enough to go to the University of Minnesota Relay for Life tonight! I was what some would call “overly committed” to Relay in college, having co-chaired it for two years, among several other American Cancer Society activities. Tonight we’re celebrating that we’ve raised more than $1 million since we started the Relay at the U in 2004. In honor of Brea, I’m bringing back this attitude tonight:

Me as an American Cancer Society "Survivor Ambassador" @ the 2006 Celebration on the Hill in D.C.

 

It’s nice to have celebrations like these take up my waiting, waiting, waiting...

 

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16 Responses to “Delay”

  1. Ashlee Suker April 8, 2011 at 12:33 pm #

    Jenna.. I’m sad that you have to keep waiting and waiting 😦 I pray that everything will work out! If you need anymore distractions Ben and I would love to visit you.. or if you’re feeling up to it you can definitely come visit us in our new house 🙂
    Miss you lots… Ashlee

    • Jenna Langer April 11, 2011 at 9:03 pm #

      Would love to! I’ll let you know when I’m back home.

  2. Clare April 8, 2011 at 12:40 pm #

    Bummer!!! Waiting, waiting is no fun. So sorry. I hated the waiting too. Sounds like you are getting in all the fun things that you can, and by the way, you look great in purple! But I would like to see you in a little orange and red–more manly colors. Stayed tuned for that!

    Clare

    • Jenna Langer April 11, 2011 at 9:05 pm #

      I’m trying! And yes, I’m sure orange and red would do the trick too 🙂

  3. Brittany Rask April 8, 2011 at 5:24 pm #

    blargyl on the waiting. But, so exciting on the relay, send my best. I can’t believe how much has been raised since being there, that’s just amazing. I miss bleeding purple.

    • Jenna Langer April 11, 2011 at 9:07 pm #

      We missed you! I must admit, I wussed out from the cold earlier than anticipated, but they definitely pulled it off.

  4. Ann April 8, 2011 at 5:38 pm #

    Well I do like the purple attitude! Not fun news on the waiting, but yay for having no change in the bone marrow results. The bed is still available downstairs and we will feed you more blood reinforcing food if you show up. Emily is no longer sick and could use prom dress advice.

    • Jenna Langer April 11, 2011 at 9:09 pm #

      My pre-balding photos arrived and are wonderful! Thank you. And what’s trending this year for prom? Prints again? Short? If I can’t be in St. Paul, do send photos for judgment

  5. Robin Guadagnini April 8, 2011 at 8:55 pm #

    Oh poor thing! I can only imagine how bummed you are! I am sending a hug and echoes of your mom’s talk :).

    I am very pleased to hear no change in your levels and think that is a great sign that all will be ok for the wait. Those perfect things have their own time frame for sure! But I am glad to hear that the blood helped too!!!!

    Sending love and hugs!!!Robin

  6. nita seibel April 11, 2011 at 9:04 am #

    Hang in there, Jenna. I know this is hard to wait for a delay like this, but that is really good news that your bone marrow is stable and it sounds like you have a such an excellent match in the donor–so it will be worth it in the long run.

    • Jenna Langer April 11, 2011 at 9:11 pm #

      And the doctor is always right… thanks a lot 🙂 Means so much you’re keeping up with me.

  7. Valerie Wilcox April 11, 2011 at 6:20 pm #

    Jenna,

    You keep your spirits up. The waiting is hard but you are going to do wonderfully. Good luck getting through that first long 100 days and then you will be on the mend. Keep up the Redhead Report, it is very helpful to the rest of us out here waiting for a Stem Cell Transplant. v

    • Jenna Langer April 11, 2011 at 9:17 pm #

      You’re waiting for a stem cell transplant?

  8. carol guggisberg April 13, 2011 at 8:24 pm #

    Hi Jenna:

    I finally found you–on the your website. Needless to say I am not computer savy.
    Sorry your transplant has been delayed. Gives us extra days to pray for you.
    Keep us updated–hugs and prayers–
    Charlie & Carol

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