And I’m Back…

24 Feb

Talk about interruptions. I certainly didn’t think I would be leaving Washington, DC in such a hurried, unplanned fashion.

Dr. Seibel, my oncologist in DC, had been watching my platelets steadily drop for a couple months. Last week they fell too far, prompting her to recommend I get a bone marrow test. My mom flew in to the land of monuments on Thursday to see the Friday procedure through. We had little reason to think anything major was wrong. I was bruising, but anyone who knows me knows my run-ins with walls, doors, and other obstacles are frequent, making bruises hard to attribute to anything other than plain clumsiness.

Later that afternoon, Dr. Seibel called saying the preliminary pathology results were showing I had something called myelodysplastic syndrome (MDS for easiness’ sake). I think I asked her to pronounce it about four times, then hastily jotted it down on paper as she spelled it. I had never heard of it. Apparently, it’s a blood disorder that causes my bone marrow to make dysfunctional blood cells that don’t mature into healthy cells. Eventually my red and white blood cells will fall too, in addition to my platelets. If it goes untreated, it often turns into acute myelogenous leukemia (AML), which is definitely not good. They have since confirmed that my MDS is a result of the chemotherapy and radiation I received for my successful osteosarcoma treatment when I was 17.

I went into work at Powell Tate later that afternoon, filed for medical leave and said goodbye to some of my already heavily missed coworkers. We rode the Metro back to my apartment and researched flights back to Minnesota. We packed extra heavy and flew home on Saturday. I told you things moved quickly!

My mom, dad and I met with my wonderful former oncologist Dr. Arndt at Mayo Clinic already this past Tuesday morning. She explained that if the diagnosis was confirmed to be MDS (which today it was), they would recommend a bone marrow transplant (BMT). I immediately thought back to my days working at the University of Minnesota’s Academic Health Center, where BMTs often made news for treating diseases that were supposed to be incurable. During a BMT, they first perform 8-14 days of intensive chemotherapy that basically kills my bone marrow cells and immune system to make room for donated healthy bone marrow. The transplant itself is apparently pretty anti-climactic – it’s a lot like a blood transfusion. After I’m healthy enough to leave the hospital, I’d have to live at the Gift of Life Transplant House near the Mayo Clinic for a few months. You can read more about BMT here.

“Do you have a brother or sister?” asked Dr. Arndt. This is important because I need a donor whose bone marrow exactly matches mine. Siblings are a match 1 in 4 times. Parents are a longer shot (Dr. Arndt has only seen two cases in 21 years), but they were tested anyway on Tuesday. I took my brother Jack to be tested today, urging him to think “match.” His respoonse:

“You know how I always make fun of you for not having an athletic bone in your body, hopefully I can give you a shot… my marrow is the shit.”

So, right now we’re waiting, hoping and praying that Jack is a match. We should find out by the end of next week. If he’s not a match, I need to go to the national Be The Match Registry, operated by the National Marrow Donor Program (think the Shaq PSAs). It takes three months on average to find a donor here, so that’s why we’re realistically but ardently hoping Jack’s marrow is as good as he says it is.

Until then, I’m living in New Ulm with my mom and Brad and am already slated to waitress the church sauerkraut dinner on Sunday. Thankfully Jimmy happens to be home from medical school in Chicago on spring break next week. Of course I signed him up to work the sauerkraut dinner too. I’m hoping he’ll wear his lederhosen for the ladies’ sake.

Thanks so much for all your support so far. It really helps.

Oh, and please stick with me on this blog. It’s my first, so I’m still figuring out the basics.

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43 Responses to “And I’m Back…”

  1. Candace Henley February 24, 2011 at 10:55 pm #

    God Bless you Jenna on this journey. You are a beautiful young woman who has done so much for others on behalf of cancer. I will kee p you in my prayers and check on you periodically to see how things are going. If I can ever help you please let me know.

    God Bless you and your family.

  2. Angie February 24, 2011 at 11:13 pm #

    Wow, Jenna – you’ve maintained such a positive attitude! Keep up the good thinking, and I’ll send lots of thoughts and prayers your way. You’ll beat this. Let me know if there’s anything we local WS-ers can do to help 🙂

  3. Katie Lloyd February 24, 2011 at 11:47 pm #

    Jenna,

    You inspire me every day. You bring such joy to those around you. I will be thinking of you and praying for you often. Continue to keep that head high and focus on the positives as you always do. Remember I’m only a phone call or short drive away.

  4. Sadie February 25, 2011 at 7:00 am #

    Jenna- Wow, never thought we would be back here again almost 8 years later….but your positive attitude reminds me that you are a fighter and will get through anything. You have always been in my prayers and I will continue to send extra ones your way. Keep up the great attitude and know that you have lots of people thinking about you!! Miss you!!

  5. Vicki February 25, 2011 at 8:07 am #

    Written as only Jenna can! What a positive young women, with a true gift. My prayers are with you as you begin another journey. Much love heading your way!

  6. Laura Stroup February 25, 2011 at 8:36 am #

    Jenna!

    You’re in my thoughts and prayers. Keeping my fingers crossed that Jack is a match! And if not–let us know. We can all drag out bootays to out to get swabbed for you!!

    xoxo
    Laura

  7. Stephanie Schmitz February 25, 2011 at 8:45 am #

    Jenna,

    I’m sorry to hear of this latest hurdle in the road, but you triumphed before-you will do it again. I hope you know how many people are praying for you and following your story. God Bless!

  8. Brea February 25, 2011 at 8:46 am #

    Jenna my love! So proud of you for keeping your head high for this. Not a fun thing, but, as only Jenna will, your sense of humor always shines through. Best of luck with the matching with Jack! (And with the sauerkraut soup supper – ew?)
    “You know how I always make fun of you for not having an athletic bone in your body, hopefully I can give you a shot… my marrow is the shit.” HAHAHAHAHAHAHA
    LOVE YOU!

  9. Eric Hoffman February 25, 2011 at 9:24 am #

    Great blog, JL. Of course I’m not surprised. We miss you a lot! You are tough as nails!!

  10. Sarah February 25, 2011 at 9:25 am #

    I don’t think you’d like it too much if i swore on here so i won’t be a whole slue of swear words went thru my head when i read this.

    geez Jenna. I think God can take you off his crap list now. enough is enough.

    thinking of you, and hoping for better days ahead. you’re one tough cookie. i have no doubt you’ll overcome this. until then, soak up some hometown comforts and love.

  11. Nicole W February 25, 2011 at 9:28 am #

    We’ll all be thinking “match,” too. Miss you!

  12. Pam Schmid February 25, 2011 at 9:34 am #

    Jenna, you are such a doll and I LOVE the name of your blog, you cute little red head! What an inspiration you are to everyone and I feel so lucky to know you. Hopefully, Jack’s marrow will be exactly what you need! Much love being sent your way…

  13. Amy Leonardi February 25, 2011 at 9:39 am #

    Wow, Jenna. I’m so sorry you’re having to go through all this. With your positive attitude and the support of your family, I’m sure you’ll do great. And, by the way, love the design of your blog (and your pic is fantastic!). Hang in there, Jenna… let me know if I can do anything to help.

    Amy

  14. Bob Brody February 25, 2011 at 9:45 am #

    Hi, Jenna,

    I’m pulling for you bigtime. And knowing you as you do — particularly your powerful spirit — I know you’ll be OK.

    Cheers,
    Bob

  15. Brian Wommack February 25, 2011 at 9:45 am #

    We miss you terribly, Jenna, but know that our best wishes and prayers are with you for healing and strength. Keep that amazingly optimistic attitude — you are a real inspiration!

  16. Walter Rios February 25, 2011 at 9:51 am #

    There is a reason 4 everything and sometimes takes time for us to understand… you are strong beautiful girl and I will make sure GOD listen to all of us we miss you , love you and need you and your PT family is here 4 u…

  17. Imani February 25, 2011 at 10:13 am #

    When I read your Bro’s comment, all I could think of was your story of the years you played basketball in Middle School. Here’s hoping coach will let you test out your skills on the court again!

    I’ll be praying for you Jenna!

  18. Heather Cable February 25, 2011 at 10:13 am #

    Jenna – you are amazing. Thinking about you and sending tons of good vibes your way.

    FYI – I conducted a quality assurance test of your Nerf N-Strike yesterday, and it’s still in good working order. I’ll continue to check it periodically while you’re out and keep you apprised of my assessments. 🙂

    Look forward to hearing more about the sauerkraut dinner – sounds divine!

  19. Suzanne Lindley February 25, 2011 at 10:39 am #

    Jenna, Your blog is so you! Beautiful and positive! I so hope that Jack is a match and that this bump in the road is quickly behind you. You inspire us all!!!!!! Love and hope sent your way!!!

  20. Whitney February 25, 2011 at 10:40 am #

    Thinking about how great you are and sending some super healthy vibes in the direction of New Ulm. 🙂

  21. Rose February 25, 2011 at 10:55 am #

    Hey Jenna,
    Now I officially know two people with blogs. My sister has one on books which is pretty interesting. I told my husband Lyle about you last night and he was like who is this? and I said remember we went to her graduation party…anyway we are both praying for a Jack match. Just think, with his athletic ability and your knowlege of dance who knows what you could do??? Thinking of you often, Rose

  22. Tracy Haen February 25, 2011 at 11:48 am #

    Jenna
    So sorry to hear about all of this. I know this isn’t a god situation, but I hope everything goes as well as it possibly can for you. You’ll be inmy thoughts and prayers! Stay strong!

  23. Linda February 25, 2011 at 12:15 pm #

    Cubemate! Are you planning to sport your dirndl to go with Jimmy’s lederhosen?

    Your unfailing positivity and sense of humor is amazing, and you are greatly missed here. Keeping my fingers crossed for a match! In the meantime, I’ll work on tracking down a bubble machine for your return…

  24. Amy February 25, 2011 at 12:18 pm #

    Hey Jenna,
    It’s Amy. I got the link to your blog on Ann’s facebook. GREAT JOB! We’re keeping you in our thoughts and prayers. Greg’s sister Pam says the same. I’m thinking I’ll be in NU on Sunday. *Crossing my fingers that you and Jack are a match bone marrow wise*
    Love,
    Amy

  25. Ann Tucker February 25, 2011 at 12:34 pm #

    Wish you were back for better reasons too. But in the meantime I will be swabbing my cheek very soon because well, you never know. Your mom and I can start to enforce the old “no hitting Jenna” rule when the platelets are down. Looking forward to a possible lederhosen/dirndl sighting as well – take care.

  26. Lucia February 25, 2011 at 12:47 pm #

    Jenna, You are a rockstar! Thank you for starting this blog so all of your friends, co-workers and family can keep up with you and cheer you on. I hate walking by your empty desk and miss seeing your smiling face, but I’m happy you are with your family and being cared for by the great docs at Mayo Clinic. Please know that we are with you every step of the way. xo, Lucia

  27. Charity Bell Harvala February 25, 2011 at 1:13 pm #

    Jenna,
    We are friends with Tony and Laurie. When my husband, Andy (aka HARV) shared this blog with me he said “not only is she a brilliant human, but brave” I think I met you when you were a pretty little girl. I am amazed at this blog and your attitude. Obviously, you have to beat this and become something fabulous! You already are “the shit” and I know God has amazing things in store for you. If your brother is not a match can regular people like me get tested just for a match with you?
    Wish I could come for the saurkraut….is New Ulm the saur kraut capital of the US? It should be. It has inspired many a batches of saur kraut soup at the Harvala house.

    Blessings,
    Charity Bell Harvala, St. Boni, MN

  28. Sally Squires February 25, 2011 at 1:33 pm #

    Jenna: You are awesome. You’re going to take the bone marrow registry–and the BMT ward–by storm. I hope they are prepared!

    Great name for this blog (and I say that proudly as graying former redhead.)

    Have fun at the sauerkraut dinner. Hope you will share a picture of Jimmy in his lederhosen.

    Lots of good wishes and many prayers coming your way. We miss you and can hardly wait until you’re back here in DC.

    All best,
    Sally

  29. Valerie I. February 25, 2011 at 1:34 pm #

    Jenna-
    I’m totally crossing all of my fingers that your brother is a match. I’m also so glad that you were proactive, didn’t ignore some weird symptoms and went to the doctor to catch this as quick as possible. You are pretty inspiring to someone (a lot of us!) who stick our heads in the sand and don’t want to see a doctor.

    If you are ever in Minneapolis and feel like a drink or a coffee, let’s round up some lucky13 troops! I’d love to see you, and will keep following your blog.

  30. Karen T. February 25, 2011 at 2:17 pm #

    Jenna,

    You are an amazing inspiration! We are friends of your Dad and Cindy’s, we have met in the past at Women of Today events. We are praying for you and the entire family. Anyone would be honored to share the marrow with you, because you are unstoppable and always reaching for the stars…we know you will get there even if your journey has taken a little detour!! Hang in there and know that many prayers are being sent your way!

    Hugs,

    Karen & Doug Torseth

  31. Julie February 25, 2011 at 2:56 pm #

    Dear Jenna,
    Our prayers are with you! Once again you will beat this with your positive attitude!

  32. Melanie Ofenloch February 25, 2011 at 4:49 pm #

    Jenna,

    Thinking about you and praying for you. Ready to buy you a great bottle of when upon your return to WS 🙂

  33. Grandpa Dick February 25, 2011 at 7:12 pm #

    Hi Jenna:
    Franklin Roosevelt made a very famous quote many years ago during his 1936 campaign: “We have only just begun to fight”. You are the best of all fighters Jenna. We know how hard you fought to overcome cancer before, and we know that you will be up to the challenge to do it again. We are all in support of the effort it will take to win this battle and I wish that I could share your burden. Have Mayo send me a bone marrow kit so that I can be among the many volunteers that I am sure will want to assure that you will come up with a positive match – just in case Jack has left too many of his bones on the playing field. It is now time for the rest of us to follow your lead as an vibrant cheerleader and get behind you with the support you will need for this new battle. Hang in there Jenna and come out swinging! We all wish the very best for you. May God join us in looking after you and assisting in any way he can.

    Love you Jenna

  34. Cyndi Hillesheim February 25, 2011 at 8:55 pm #

    You are so stong and such an inspiration to us all. We will pray that you find a match very soon! Maybe see you at the sauerkraut dinner!

  35. Clare Lynam Goldfogle February 25, 2011 at 9:40 pm #

    Hey there! It’s bizarre that we were just talking about treatment a few days before all this happened. But all that matters now is maintaining your positive attitude and excellent medical care, which you seem to have both of in spades. So every part of my body is crossed for Jack being your match, but I am also in the registry, so feel free to call on me. I am of Irish ancestry if that helps–no red hair, but I willing to dye it if it will help you. Wouldn’t be the first time! And hey, tell those drs to expedite the registry search if they need to. I hear it wouldn’t be the first time.
    Love and hugs, Clare

  36. Julaine Balbach February 26, 2011 at 6:11 am #

    Hey Jenna,

    Just heard the news last night! Ahhh, just recently talked about the Iatrogenic diseases in Pathophysiology! I am sooooo sorry that you have to go through this again! You are an amazing young woman, and we pray that Jack is a match! Geez, that part did make me laugh what Jack said and oh, so typical of him!! Great blog you started and as usual, your flow of words is a gift! Keep us updated! Thinking of you!!

  37. Ryan McCormick February 26, 2011 at 12:39 pm #

    Stay strong during this fight and keep up the positive attitude. You’ll be in my thoughts and I’ll be following the blog.

  38. Sue Dommeyer February 26, 2011 at 2:16 pm #

    Dear Jenna,

    Just heard. This sucks! I’m not sure what else to say. Just know that I’m so proud of you and everything you’ve been through, everything you’ve done, and everything you’ve become.

    Ironically, about a year ago I got a bee in my bonnet to do something and signed up on BeTheMatch and am already a registered donor. Nothing would make me happier than to be your perfect match (do they have a way of checking that?). Got my fingers crossed!

    Here for you if you need anything. Just let me know!!!

    Love, hugs and kisses,
    Aunt Sue

  39. Chris Olson February 28, 2011 at 8:31 am #

    Hello Jenna, We met briefly several years ago, when you and your grandmother were at a play at the senior center here in NU. We are good friends of the Moeller’s and I worked with your Mom for several years. How sorry I am that you need to go through all this again, but I have every confidence that you will fight hard, continue to be strong, and once again beat the odds. You and your family have been and continue to be in my prayers every day since we learned about this latest diagnosis. With love and prayers. Chris Olson

  40. Ann Green February 28, 2011 at 9:18 am #

    Hi Jenna, of course I was so shocked and sad to hear the news. It is so strange because about 5 days before my mom told me you had cancer, I had been thinking about you and the last time she told me when you had cancer at age17. I must have been sensing something—not sure what they call that! My pastor who is just a few years older than you are was diagnosed with Diffuse Large B cell Lymphoma and went through aggressive chemo this past summer. She beat her cancer and is an inspiration to all of us and more beautiful then ever. She also has red hair and its grown back better than ever. She reminds me a lot of you. Her whole sermon yesterday was on worrying and how every day she worries about her cancer coming back. She can put on a brave face in public but that fear is always there. We are human and it is only natural. She said so many wonderful things in her message but what I remember most was when she said” The God that made you won’t abandon you” and I believe that. Your many friends and family will be there to support you also. God has a way of working through them! There is a Relay For Life on March 25-26 in River falls, WI at the HS that our church is supporting. It is our mission for the month. I will get on my walking shoes and give it a whirl. Will be thinking and praying for you and I sent your blog to my Pastor Erin Nelson. I think she has some great connections in the prayer department!!!
    Love Ann Green

  41. Jeff Smokler March 3, 2011 at 12:56 pm #

    Jenna,
    Keep up the positive thinking. It will take you far. And get some rest! Looking forward to the day when you are back here at PT.

  42. A-T March 4, 2011 at 4:11 pm #

    Dear Jenna, I’m a good friend of your dad’s (aka The B-Word) sorry to hear you are once again battling to stay healthy. Wanted you to know that your courage, strength, grace and humor are truly an inspiration to many.

    Best to you,

    A-T Mracek

  43. Susan Neale March 16, 2011 at 9:56 am #

    Dear Jenna,

    You (and Jimmy!) have been in my thoughts and prayers ever since Kyle gave me an update. I have been attending a Lent Mission at our parish and I have heard the words: ‘ your journey’ a few times. When I hear these words, I think of you. I am sending my prayers on your behalf – as you steadily journey back towards strong, good health. And my prayers go to Jimmy, your mom and your entire family – they are your amazing support team. Later in the late summer or the fall, Peter and I look forward to you and Jimmy visiting us again in Indiana. A big hug with love, Susan

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