Game On – Equine Style

We finally heard from Dr. P with my latest bone marrow biopsy results.  It was not good news.  I have severe Aplastic Anemia, which means my bone marrow has failed.  Once again, I’ve been given a rare diagnosis, with approximately 2 to 3 Americans in every 1,000,000 having received it.  WHAT??? I was always told I was ONE in a million!  I guess that was all a bunch of bullsh*t!

Aplastic Anemia is a nasty little disease with some potentially serious outcomes:

http://marrow.org/Patient/Disease_and_Treatment/About_Your_Disease/Aplastic_Anemia/Aplastic_Anemia_(Severe).aspx

So, I have basically made it to the Big Leagues!  An extended stay at City of Hope!

The plan is for me to check into City of Hope on Thursday or Friday afternoon for at least a week’s stay to get a 4-5 day treatment called ATG (Antithymocyte Globulin).  ATG consists of antibodies that come from either rabbits or horses.  I will be receiving the horse version, which I really think is superior.  I think a mane and tail is BAD ASS compared to lame bunny ears and a cotton ball.   Yes, you read correctly, I will be receiving equine antibodies– as in Mr. Ed, who is a horse, of course.  I’m really hoping my donor is related to Traveler and is not an ass.  ATG will hopefully target my misbehaving T-cells, which are attacking my bone marrow and not allowing it to produce white cells, red cells or platelets.  It is known as the “Shake & Bake” drug, because it causes very high fevers, nausea, vomiting and uncontrollable tremors.

http://marrow.org/Patient/Disease_and_Treatment/About_Your_Disease/Aplastic_Anemia/Immunosuppressive_Therapy.aspx

http://www.uth.tmc.edu/pathology/medic/patients-atg.html

ATG has done well against Aplastic Anemia, and we’re hoping for the best.  I have a strong suspicion, though, that I will be back for a bone marrow transplant, which, if successful, can be a total cure.  My brother, Leason, will be tested soon to see if he is a match, if he hasn’t fled the country by then.

I will be in the immune-compromised area of the hospital, with vitals and blood taken every 4 hours to keep a close eye on any potential side effects or rejection reactions.  So, basically, the Haz Mat Team will be busting into my room round the clock sporting masks, gloves and gowns, with thermometers, BP cuffs and needles drawn.  I’m told I will have to jump on a f-ing scale each time as well.  I have Todd all teed up to smuggle La Paloma burritos into my room… which I guess with the scale thing might be a bust?!

My bone marrow gets a grade of ‘F’ – and you know how much I love that particular letter 🙂

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I am a survivor of two extremely rare diseases, thanks to over 100 blood transfusions and ultimately, a bone marrow transplant. My blog, joselynsbrawl.com, chronicles my adventures through medical offices, operating rooms, clinics, transfusion centers, hospital transplant floors, victory celebrations, and finally my bucket list items – all with a humorous and sometimes profane twist. My goal is to inspire others not to give up on life or anything else, and to understand that it’s actually possible to enjoy any experience, even battling a life-threatening illness (or two).

76 thoughts on “Game On – Equine Style

  1. I wish I could wave a magic wand and make all this horror go away. I know I don’t have the words to comfort you except to say that you are in safe hands at City of Hope and to finally have a diagnosis is the first step in making all of this go away. I’m on the marrow registry and maybe all of your followers (if they aren’t already) might be motivated to register. What a blessing it would be to help someone in need and to have your journey be the catalyst for that. As always, you are in my thoughts and prayers. Lots of prayers!

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  2. Traveler is one of the most gorgeous mammals on this planet!! Coming from a horse girl herself…I second choosing the equine route!! You’re in for one heck of a ride, no pun intended 😉 yeehawww! Giddy on up!! oh and by the way…you’re such a rockstar.

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  3. Joselyn,
    I am so incredibly sorry to hear the news and have been thinking of you every day and will continue to do so.. Your attitude is an inspiration to us all. You CAN and WILL make it through this. It’s MILLER time baby in the most kick ass fighting kind of way. All my love, Tracy

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  4. WTF Jos! This was not what we wanted to hear! So not fair! But as always, you are trying to keep up the good attitude! You are remarkable and we all know that can’t be easy! My heart goes out to you having to face all of this! All though you do a great job of explaining it, I can’t even imagine what you are really going through. Please try and stay strong!!!! It sounds like you have a tough week ahead of you and we will all keep you in our prayers, as we have everyday since this nightmare began! Again, thank you for keeping us updated. Your sense of humor makes us laugh and the reality of what you are dealing with makes us cry! We love you!!!!

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  5. Jos,
    Geez– some times it is better to be NORMAL and not so frickin SPECIAL!! Seriously, I’m thinking about you lots and saying my prayers that this upcoming “horse ride ” is a smooth one.
    Lots of love, E

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  6. Jos, your village of people…. From all over the world, are with you in love and prayer….. Stay strong as we all know you to be…
    No mountain is to high to climb for you …..

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  7. Okay — Thursday or Friday for a (hell) week. Got it. You will be in our hearts and our thoughts every single day. Feel that shakin’ vibration? That’s the S3 team sending you really, really strong positive thoughts. Feelin’ hot-hot-hot? That’s the positive energy we’re sending. We will be there beside you in spirit. Trojan spirit! After all, we are on the TPJS (Totally Positive Joselyn Supporters) Team. We’re your peeps.

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  8. You will be taking with you lots of love and prayers. You are a fighter, plus u will have horse power! You have so many people cheering for you – team joslyn will be in full swing! Hang in there! Love love

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  9. Joselyn,

    Hello from an old FHS Drill Team member, Rochelle (Davis) now Barcellona. I’ve been reading your blog for a week or so now thinking how absolutely crappy it is that you are going through this but how absolutely amazing you are going through this. I picture people incredibly ill reading your blog and getting in trouble with their doctors for busting their stitches from laughing. One day I’ll see you on the TODAY show talking about your little blog and how it turned into a book and then a movie and it helped millions of people get better through laughing. Your attitude is inspiring and your burritos obviously envy worthy. Hang in there. You’re needed elsewhere in the world to bring smiles to children. – Rochelle

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  10. You hang in there girl! I love your spirit and think you should be able to say as many f— words as you like. Still praying for a complete and speedy healing. xoxo

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  11. Joselyn:
    I sent away for my marrow testing kit that comes with swabs and such. My Dad always said I was one in a million – so maybe you and I will be a match! I’ve always been a big boned gal so you can have as much marrow as you might want! Keep on doing battle until the marrow is lined up.
    PS: I had a pony when I was young named “Sassy” – who was aptly named. Feisty. Frisky. He had no brakes!! he’d ‘runaway’ with you if you weren’t careful – hellbent over any obstacles in the way – hated to be anywhere but at the front of the pack when we went fox hunting. I hope you get some “Sassy” horse cells that will kick butt and keep you at the front of the pack!!
    Think of you all the time!
    Ride on!
    Rock on!
    Fight on!

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  12. I have a couple horses in the back yard if you need them!! Sending you strength and hope!! Keep up the positive attitude and thank you for the birthday wishes-meant a lot knowing what you are going through!!!

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  13. Love that Mr. Ed will be there helping you out in style! And Traveler is right there with you too! Ok, not fair and can’t believe it’s come to this. Thinging of you my little ENFU pal. Again “F:” the letter that you love so much…who would have known! XOXO, jae

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  14. Dear Jos, Unfair as H-ll yes but insurmountable, no. If anyone can beat this you can. Life can be a four letter word and, of course, it has an “F” in it too! As you fight this with all your strength know that we all love you and pray for the best. Siblings are the best candidates for BMT’s so Leason is ready to try for a match as your main man for it. Let him try to flee the country! The Kappa Sig posse will stop him in his tracks. lol. Regarding siblings, you gotta know Jos that all of Todd’s “Bros” got your back and wish we could do more. They do real miracles at City of Hope. I just wish that the rough side effects you mention will not get you down because you are one of the most courageous people I know and we don’t want you to lose that quality. Know this, however, if you need some down time, take it. We will share that down time with you, we understand it, and FYI there is nothing wrong with it either!

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  15. Jos….this is Mr. Ed…Hanley that is…if there is anything you need from my body, especially the horse-like parts, let me know. We had Nancy and Brian Hunsaker over for dinner the other night, and they are now following your blog as well. I texted Toddy a pic of Nancy and me. Anyways, we really love all of you and are thinking of you everyday. We are sending you our energies and good thoughts. What the meds and docs don’t do to cure you, your attitude will! You inspire us…I really mean that. Love Toddy/Eddy

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  16. I am sorry that you are going through this. One of my dearest friends today had this experience twenty years ago! So I know it can turn out all right. I wish you the best and will pray for all good things. Love you!
    Susan

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  17. Hey Jos,

    Hope the “horsing around” you’re about to do will do the trick & you won’t have to do the transplant. Take it a step at a time & know that we are rooting for you every step of the way. I’m betting on your horse to WIN! XO & please give the horse a carrot for me!

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  18. Sorry Joss, that sucks big time. Know this, we are all thinking, praying, sending positive vibes and hopes your way. I agree with Bart, if you need down time take it. City of Hope is the absolute best place to be right now. xxo

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  19. Ok Now you’re not just BAD ASS, you’re Bad to the Bone.
    Come ON!! REALLY???
    Do you think a big ole margarita is OK to smuggle in with the burrito, cus just reading this makes me want one.
    One thing’s for certain, you have such courage under pressure. Only YOU can make this whole sucky horse sh@t mess sound funny.
    All jokes aside…I didn’t know you were a Song girl…ME TOO.

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  20. Jos, sorry to hear of this latest development, but I’m glad there is still HOPE and you are in the best of care. Sending warm and positive island vibes your way from your fellow SAS84 castaway.

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  21. Blows…this entire situation! Bad Ass…YOU, & your spirit, & Todd & your docs, etc. I’m not nearly as eloquent as you but you get the idea. wish i could carry some of your load. Horses rule! XOXO

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  22. Hey Jos, sounds like Dr. P just turned on the lights for you. Looks like an ugly opponent but you can finally see exactly what you are fighting. You have an excellent team and plan that is proven to be successful. Praying you don’t see anymore curve balls. Sending lots of love from Trinidad!

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  23. Wow! Now your enemy has a name, always so important. Fabulous that you are getting world class care, both from Todd and your family and friends and from COH. Sounds like this next week will be an enormous challenge.

    I can offer a couple of suggestions to help you get through these next few days. First, if it were me, I’d gather not only music but every piece of writing I could remember ever having loved – poetry, short stories, travelogues, humorous essays – anything Todd could read to you to put your mind in a different place. Secondly, I’d recommend putting together a list of visualizations to focus on – all the experiences you’ve had, places you’ve been and people you love. So one hour could be the ship – the smiles of the crew, the sunsets, the sound of the water rushing away from the stern. Just put yourself there and try to remember how it looks, smells, sounds, etc. The next could be Kilimanjaro, then your best friend, etc. I’m sure your list will be long and hopefully will help you endure the physical challenges. I know a woman who did this for her marathon, designated each mile for somebody or something she loved, and it really helped.

    Always remember the huge crowd of people out here who are rooting for you!

    Holding you in the light,
    Marjorie

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  24. You never cease to amaze me with your positivity! I have been through a similar time with mys sister, and you probably already know that a brother would do anything for a sister -especially one like you! Keep fighting girl, and after 40 plus years of coaching I know how to pick winners!
    Much love and a cyber hug!

    Hugh

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  25. You are in our thoughts and prayers Joselyn. You can beat this!! I know you can! You are the strongest person I know.
    Lots of love and prayers,
    Tami

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  26. Joselyn

    You amaze and inspire me daily as I read your blog, thanks for keeping us informed. Good luck my friend and know many people love you and are wishing the best for you.!!!

    Tory Veje MacDonald 🙂

    xoxoxox

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  27. Jos, so sorry to hear that you have to go through this next procedure, but it sounds like there is a light at the end of the tunnel. That is good news. We do hope you don’t start picking up horse habits, however. They have some rather unpleasant bathroom habits, like going wherever they happen to feel like it. Also, there is that thing they do with their lips that show their really big teeth. I guess it’s a sort of snort??? Talk about hairy faces, too! We’re such animal lovers, that we will love you no matter what happens.

    Good luck at the City of Hope. We know they will take the best possible care of you. This should be over with soon, and you can get back to your normal life. Think about the things you want to do then. Things like this make us appreciate all the things we take for granted. Anyway, we will pray for you daily as we have been, and hope the 5 days of this procedure go quickly for you. We also hope this will do it. Keep thinking good thoughts, Jos. You are loved by so many people, as we can see by your comments here. You have quite a following! We would do anything to make you well right now if we could.

    Take care, Jos. We love you more than words can express.

    Love, Aunt Wendy and Uncle John

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  28. Jos,

    Things are not so comprehensible and expressible as we would mostly believe. Most events are inexpressible, taking place in a realm which no word has ever entered. More inexpressible are the feelings we have for you and the courage you have in this battle. But alas, all we have are words so we will use them to express our deep and abiding love for you, and know that we are there with you as you continue the fight.

    Lynn and Carolee

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  29. Jos,

    I am so sorry you are in the hospital but now there is a name to what has been attacking your blood cells and platelets, and I know you can beat it. You are on my mind daily and I will continue to pray for your full recovery.

    I hope Todd is able to smuggle in a few burritos!

    Love and hugs,
    Beth

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  30. Go right to the source and ask the horse.
    He’ll give you the answer that you’ll endorse.
    He’s always on a steady course.
    Talk to Mister Ed.

    Stay with this fight Jos, Ride this horse and get your prize!! love you, Cookie and family

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  31. Joselyn,

    A+ for attitude, will and perserverance. You and Todd are in Gary and my thoughts daily and we’re hoping there will be good news soon. Thanks for your blog updates, they are so inspiring!!

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  32. Jos,

    My Passport is in a lockbox. Not an Al Gore style one – We’re talking one with an actual lock on it. I’ve never really liked horses (especially after your wicked beast Nicki bucked me off and bit my finger) but – I will change my mind if their antibodies do the trick… Fight On!!! Love you, Leas

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  33. And who would have thought the lifeline you would need to call was a horse! I’m with Leason – i never liked horses since your horse bucked Kelly off in the street in front of your house! My promise to all the horses out there – if this works I will re-evaluate my feelings toward you. Anyway, we are all praying for your speedy recovery down her in San Diego, Jos. Anything you need – just ask…even bone marrow. Hugs from the Koeleman Family

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  34. Joselyn,

    You’re in our thoughts and prayers daily. Keep up your amazing attitude and you will beat this!! We’re sending lots of good karma your way!

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  35. Dear Jos! You need some videos to pass the time and distract you from the horsey side effects. I recommend classic, inappropriate comedies! I like Animal House and Chris and Julie’s favorite father-daughter bonding movie is Superbad.
    We love you! And Chris has plenty of bone marrow in that almost seven foot frame!
    Mary

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  36. Jos, all I can say is Crap! Horse crap of course. Stay strong and we’ll be praying this treatment works and then maybe you wont need Leasy’s bone marrow!?

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