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. Jos, I am keeping you in my prayers. Had know idea what was going on as I have been living under a rock as of late. Tracy M sent me the link to your blog and I just read all the entries. You are an amazing woman (hilarious too) and I believe in my heart that you will come through this a winner! Just like Seabiscuit (just keeping it light)! Sending hugs from the east coast to you! XOXO

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  2. As I read this I thought again of my Dad and what he went through during his heart transplant journey. You are going through the same medical nightmare. But, with humor and grace. You are the last person I would expect to have to go through this. You have always inspired others and lead an amazing life. From you kids to Global Grins! I think back to the night we got the news about Dad. Baz Luthrmann says it best…”The real troubles in your life are apt to be the things that never crossed your mind; the kind that blindside you at 4pm on some idle Tuesday”. I have faith you will come through this and dance again.

    Love La!

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  3. Jos-Good luck today! I know I am among many who are holding you up in prayer. You have inspired us all to look at our petty problems and annoyances in the proper perspective. You are a brave and beautiful women on the inside and out. You will beat this!

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  4. Good Morning Sweetheart, We are traveling with you in prayer & spirit today as you embark on your next HOPE journey in Duarte. May this be the race to the winners circle! Picture all those smiles you will be responsible for when earn your Triple Crown (you must share withTodd & Leason). All races take hard work & a lot of faith. There may be times along this trek your spirit & courage may be tested. Just focus on your goal, mever syop believing

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  5. Good decision on the horse meds. If you think about it logically, who ever heard the expression “Healthy as a bunny?” or even “Bunny sense” or “Haring around?”. Nope. With the horse stuff you will be healthier, smarter and having more fun. Now Todd may disagree because there are some attributes that rabbits seem to be pretty well known for, but since kids may read this….

    Seriously, reading the humor in your posts reminds me of writings by Norman Cousins on the power of laughter and humor in the healing process. It can be a powerful tool in any health battle. We love you and send our prayers.

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  6. Joselyn,
    Your positive attitude and perseverance amaze me.  It is clear from reading your blog you are loved by all who know you.   You will beat this.  New York is rooting and praying for you.   Mary’s Cousin Debbie

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  7. Good luck, Jos. Colleen and I will be sending you positive vibes from the Hawaiian gods. (She’s on the coconut telegraph to Pele right now!) Love your sense of humor in the face of all this. Stay strong! We love you!

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  8. Jocelyn – You are a ROCK STAR! I have read all entries and you are so inspiring, funny and lively that I felt like I was there listening to you. I am hoping you get rid of this Anemia soon! Keep up the high spirits and send my love to Todd and the kids.

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  9. Joselyn, You courage is unparalleled in how you are able to keep a sense of humor. Our prayers are with you as you face one of life’s toughest challenges. If there is anything we can do to lessen the burden please reach out. It would be blessing to help in any way. God Bless, Ralph Adamo

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  10. Jos, I tried to post you a send off this morning to let you know Uncle Jon & I are with you in prayer & spirit as you embark on this next path in your HOPE
    journey. I so strongly feel you will run this next race straight into the winners circle & on to win a Triple Crown! Of course you will share with Todd & Leason! Winners require hard work, training, strength, endurance & faith. YOU have it all! If the trek becomes difficult, focus on your inner strength, your faith & the power of Gods love to carry you through.

    Your loving cheerleaders!
    power of your God

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  11. I am offering up our 3 horses for more ATG antibodies if you need them! All 3 are BAD ASS. Praying to God your brother is a donor match. If not, where do we sign up? Keep the Faith, as well as your humor. Love to you..xoxo The Cardeluccis

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  12. Hi Joselyn,

    Been reading your blog. So so sorry for all you are going through. You are in our thoughts. You’re quite a strong filly!
    -Gianna (and John)

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  13. You’re a tough-nut Jocelyn, giv’em hell!
    I know if you are in a compromised situation which seems will be the case, your Mom & Dad will giv’em hell for you. The apple doesn’t fall to far from the tree.
    Only the best wishes for you.

    John

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  14. I’m in NYC (germ infested subway = no Jos), went to Saint Patrick’s Cathedral for some soul searching and faith building. I lit a candle for you at the alter of St. Jude. St. Jude has special meaning in my family. My nana (you’d met) would often promise St. Jude hard cold cash when her wish or prayer was answered, an honest Catholic! So, bring it on, kick that Aplastic Anemia’s ASS so I can send St. Jude a fat check! xo

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  15. I vote for the tattoo, very BAD ASS! I’m thinking in your spare time, you should design a new spring line of hospital wear–very BAD ASS and very Joselyn! You give me strength. Sending fabulous thoughts, creative ideas and prayers your way. There’s more than one way to skin a disease. Much love to someone I admire! I’d take you into battle with me any day of the week.

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  16. Jos- you (and Todd) are SO Bad Ass (the apple certainly does not fall from both of your trees, we know…..). Your Bad Ass courage and F-ing hilarious account of this journey have Doug and I in constant huge teeth showing belly laughter with that salty liquid of anger/sadness flowing from our peepers……then we sober up and look at each other and ask “why THIS” darling “girl” (BAD ASS woman)???? None of us know any “whys”, do we? Just keep kicking ass and beat this MoFo of a totally Blowing disease. EVERYONE of us wants this BAD ASS victory for you!!!!!! Know our entire family has been praying (in the MOST BAD ASS way) for you, everyday. We won’t stop until our prayers for you are answered…….
    With BA-MF-ing LOVE (we mean this in the most humble of ways….:), Your IC neighbors and non stop cheerleaders,
    K and D and the whole DeC team
    XOXOXO
    P.S. Consider us in line for bone marrow donation, if our stuff isn’t too old!!!!

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  17. Good Luck today when your begin your stay at City of Hope. You’ll be getting the best of care. My prayers are with you daily.

    Love you
    Sharona

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  18. Ohhh Jos! My heart simply cries for you as I had no idea this was so serious. Putting you on my prayer list at Desert Chapel in Palm Springs immediately. The good Lord will look after you. Be strong and know the power of prayer works and heals. Just loving you so much with best friendship in this special time of outreach. Cavin xo.

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  19. Hi cousin. I’m so sorry to hear about your craptastic adventures with SS. Your attitude is so positive and awesome. If Leason flees the country or is not a good match, you know that you can count on my marrow. Keep fighting the good fight and know that I’m thinking of you 🙂

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  20. Hope Traveler is the answer to your problems and prayers – at least a cardinal or a silly baby bear wasn’t an option! Keep calm and FIGHT ON! You can do this! We are all your biggest cheerleaders!

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  21. I’ve been away and not up to date on all the happenings in the Bay. Mary M. sent me your blog link and YOU…. are truly something. You have a lot of positive energy coming your way. If anyone can beat this you can. Your humor at a time like this is an inspiration to us all. Keep fighting…..

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  22. Dear Jos,
    I just want you to know that Sam and I are reading your blog and thinking of you, Todd and the kids. Your fighting attitude is amazing and admirable. Not everyone can do that and you should know you are inspirational to us on the “outside”.

    Question, is a Clean Room anything like The King of Pop’s bubble? Can you moon dance in in there to pass the time and are people on the other side of the bubble all blurry? Is it like looking through a fish eye lense? Where is the door for when you get out? How intriguing to imagine.

    Love you!
    xxoo
    Abra

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  23. Dear Joselyn, I just found out about your battle with this disease and want you to know your courage and humor are truly inspirational. It’s been a long time since I’ve seen you but you are a jewel, so promise to be an unbreakable diamond so you can beat this! I’m just a phone call away if you need company or a good meal-I mean it.
    love, Shannon Tarnutzer, 949-939-1557

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