What an Honor!

I was so honored to have Coach Lance Stewart and the Laguna Beach Varsity Girls Volleyball Team dedicate their post season to me!  I couldn’t believe it!  They added ‘JM’ to their jerseys and signs were distributed to the crowd.  I was so disappointed that I couldn’t attend and watch the matches, but Todd and Mychaela went and they thought it was very awesome 🙂  Thanks and congratulations to Lance and his players!

So, being home for the last 3 weeks has not been exactly what I expected.  The 31 pills I take daily are highly recommended if you want to feel nauseous, tired, weak and fugly.  I’ve discovered what may be my favorite activity ever:  itching!  Yes, itching, as in:  I want to itch my f-ing skin off.  My delightful ATG rash has now given way to the driest, scaliest skin on record.  You can look it up.  I’m in the Guiness Book of World Records as having the gnarliest dry skin of any human being of all time.  So I got that going for me, which is nice.  The house is covered in a beautiful white blanket of what appears to be the winter’s first snow, but upon closer inspection, you can see it’s my skin 🙂

Finding a comfortable sleeping position is a formidable task, as I try to avoid putting pressure on my left thigh’s hematoma, my left arm’s PICC line with its two ports and bulky dressing, and my upper right butt cheek where my bone marrow biopsy was done.   For some reason, this wound has decided to open up and release some mystery goo – pretty much hurts like a mo-fo.  Due to my meds, my kidneys are on the verge of joining my bone marrow and shutting down, but I need these meds which are damaging my kidneys to keep me alive, so I continue taking them.  Dr P has me drinking 2.5 liters of Gatorade a day to help the good ‘ol kidneys in their fight to survive.

I’m visiting City of Hope twice a week now, where I have my blood labs drawn, have either a CT-scan, X-ray or MRI of my lungs or hematoma, visit Dr. P and have blood and/or platelet transfusions.  I get to wear one of these beautiful masks to keep the germ count down and to make sure I’m feeling totally claustrophobic while I’m there.  I’m usually either sleeping or itching on the way up and the way back down.  One of these next visits will include jamming an enormous gauged needle into my lame ass hematoma to drain it.  Super fun, right?  This Friday will be decision day whether I schedule a bone marrow transplant or have a miracle blood count, which would indicate that the ATG horse serum worked.  I am quite sure that I will be having a transplant, because there has been no upward trend on my counts.  Thank God for my little bro!

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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).

65 thoughts on “What an Honor!

  1. Joselyn, despite my long overdue departure from FB in favor of Pinterest I have STILL been thinking of you daily. I’m so sorry for all of this you’ve had to and continue to endure. You remain in my deepest thoughts and prayers. With love and hugs, Tracy

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  2. We send you all our best wishes. I am so thankful for having you share your journey. And I’m thankful for you!
    XO
    Mary, Chris and Julie

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  3. Maybe we can have big jef work on getting you a Gatorade contract?? You are definitely ten million times more badass than any other amateur who has ever had a Gatorade contract. Fact. 🙂

    Keep fighting jos, you are SO SO brave. You continue to inspire me each and every single day. Love you!!!!!!! I will continue to keep you in my thoughts and prayers!!!

    Ps-you are and will always be INCREDIBLY BEAUTIFUL, no matter how much snow you shed!!!

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  4. Hi Jos,
    May I recommend the Roomba? We have dog hairballs that bark as they float through the air. The best time to observe is in the late afternoon as they glow and drift by, sometimes even whimpering or growling. It was lovily when we first realized just why (your mask would help) the entire family was hacking out hairballs. This little robot has made a big difference and might help out with the snowie interior.

    Thinking of you,

    Abra

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  5. Oh Jos,

    Good God I am so sorry to hear all that you are going through–I had hoped that since we hadn’t heard anything lately that things were going so well now that you were home that you hadn’t had the time to write….Just want you to know that all your beach gals are thinking of you and praying for you and hoping for a positive turn of events. You continue to inspire to us all…..

    xo,
    katie

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  6. jos, we are keeping our fingers crossed for good news on Friday…you’re updates are so appreciated by all of us praying for you everyday…you’re fighting spirit and positive attitude (and incredible sense of humor) are inspiring…
    xo
    kemi

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  7. Jos, all the Brakovich’s adore you and have had you in our prayers and thoughts daily – “Fight On” has new meaning love you

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  8. For heavens sake! I just posted an epistle & lost it. Perhaps it will appear unfinished. High altitude must be the cause…just know as always, honey…we will see you through this hellish nightmare…brighter days are ahead. Sending so much love from Durango!!!! (just that much closer to you now)…and Leason, YOU are the bro!!!! Our love & support to all the Miller’s & CA Pomeroy’s. M& J

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  9. Joselyn, You find laughter in everything you do. That is truly a gift. Thank you for inspiring all of us through this horrific journey you are on! Keep fighting and I will be on my knees Friday morning in prayer for you.
    xo Marilyn

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  10. You are a very special lady and loved by so many people because you have touched all of our lives!! We continue to pray for your recovery and we are always inspired by your courage and humor through all this!! Keep fighting on!! Cookie and Pete, Sam and Tyler. too.

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  11. Joselyn and Todd, We know what you’re going through. In a humorous style , you make the pain paint a picture of how it is. The hole looks dark and there doesn’t seem to be any light at the end of the tunnel,but there is. Our prayers up hold you every day.. Keep going forward, you have so much to live for.. Bob and Emilie

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  12. I am sending gallons of moisturizer your way!!! DO NOT ITCH! DO NOT DO IT! TELL TMILL$ TO WRAP YOU IN SERAN WRAP SO YOU DON’T ITCH OR FLAKE! And like I always say to my sister (who just recently found out she is in remission from Hodgkins Lymphoma – see there is hope) ROCK OUT WITH YOUR PORT(S) OUT!

    Much love from your girl,

    Miami

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  13. O Joselyn we hate to hear you are suffering…..but we also hear your “fight”!!!!! Keep it up! We all contine to be by your side with arms a round you with all the healing love we can send….
    Xoxo. Kristi and Doug

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  14. My prayers are with you, hoping for the bone marrow transplant. Stay strong and always keep your amazing attitude!! Lots of love!!!

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  15. JOS….sending good thoughts and hugs your way. Wish I could itch for you and sorry your house is covered in white flakes from your itch fest 😦 dear god you’ve been through enough. Love you tons and thinking of you everyday. Stay strong and “put on the full suit of armor…”
    ENFU…my friend and TTF forever and ever,
    Jae

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  16. Wow, you continue to inspire me. Hang in there baby…remember the cat poster from the ’70’s! I am praying everyday that your journey gets easier…there are brighter days ahead my dear. I love the volleyball jerseys, so cute. As always, lots of love.

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  17. Good God Joselyn!! Your humor and your attitude is amazing!! You have taught all of us so many lessons. The Churm’s are praying for you and hope Friday goes well. Love you.

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  18. WOW – I can’t even imagine, * however you are such a great writer I am begining to understand. Thanks for sharing with all of us and allowing us to be a part of you journey. Lots of love and thank God for little brothers!
    Love,
    Tory

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  19. Jesus Jos, we thought being home would give you some relief, but it sounds like you are still suffering big time. I was glad to hear the doctors have changed your diet a bit so at least you can enjoy some real food. We are trying to will that serum to work, but if not you have an ace in the hole. Your descriptions are so vivid that i started itching when I read about your latest dilema. You do need to write about this experience once you are on your feet again. You would be an inspiration to anyone who suffers from these types of illnesses. You are in our hearts Jos – we love you.

    Lynn and Carolee

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  20. Joselyn,

    What an unbelievable blog and we are praying that the right decision will be made on Friday!

    I have to share with you that I had so many vivid dreams about you last night. You were totally healed and gorgeous as always! For some reason we were at Stanford watching Mychaela play volleyball and Piper play golf. We were walking for hours around the beautiful Stanford campus! i had to share that with you and tell you that we think about you non stop and pray even more. Hayley also ran into Rex at an SAE-Kappa exchange and they had fun!

    Miss you and thanks for the updates! We are praying always! Xoxo

    Gretchen

    Sent from my iPhone

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  21. Itching is horrible. Snowy skin is not a winter joy. We hope that you find some relief soon. We are hoping for a horse miracle this week. And if not, we know the BMT from Leason will explode your system with happy dancing blood !
    Luv u so much
    S & R

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  22. Ok just this once I’m going to be cheering for a Trojan this weekend!! Get up on that horse, so to speak, and fight on!!! Every time you hear the 8 clap from the Bruins this weekend it’ll be for your recovery! (kind a like a drinking game, but with good thoughts instead. (And no hang over afterward…) Here’s the deal, it’s just GOTTA work so if not this, than BBBM (Big Brother’s Bone Marrow) will.
    Love your guts! (and your bones.)
    Tabi

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  23. Hey joselyn. We will be thinking of you tomorrow…..hoping for the best. You most certainly have endured more than imaginable. Thank you for keeping us informed, in spite of your misery……it is time for some GOOD news! We think of you and pray for you daily. Hang in there……
    Our love
    Steve,caron,dana & steven. XXOOXXOO

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  24. Hi Jos! So sorry to hear you are still suffering. We are hoping for a miraculous platelet count. When you are itchy remember the inspirational words from Frankie Goes To Hollywood: “Relax, dont do it, when you want to go to it!” Hang in there & keep on fighting!

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  25. Jos-a dear friend of Katy and mine we grew up in Aspen went through a bone marrow transplant! It was tough but she is riding horses and enjoying life again! I would be happy to put you in touch with her if you are going that route! Sending you lots of positive thoughts! I am diving in Cozumel and have thought of you every dive-the fish and critters send their healing love!!!

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  26. SS SUCKS. Hal Madsen had a heart transplant 9 years ago. He went through hell and back to get where he is today. Much of what you blog about is similar to Dads journey. The Madsen girls and Karean could never find the right words to comfort him or make the pain go away. But, we never stopped trying. Sleep and soft skin will come again. Travel and a new fashion line will too! Maybe a design line of hospital gowns and colorful socks! You spend a lot of time looking at your feet when your sick! Fight the fight…and the dance will come again!

    Laura

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  27. Jos,

    My cousin Marilyn (recently retired) was a long time nurse at a hospital. We talked about the bone marrow transplant procedures a couple of times. I wanted to understand more about it and find out the general success rates of these procedures – and of course apply them to you & your specific situation. Marilyn indicated that they are so good at doing the bone marrow transplants now – that most people end up with a full recovery. Yeah, I know – what does “most” mean??? That was my response too! Marilyn said that the success rates do vary depending on the medical condition of the people getting the transplant. But, her discussion was very encouraging Jos!

    You are going to benefit from the bone marrow transplant Jos. It will allow you to start heading in the right direction again. Once it starts to help you, your overall good health will kick in and you will improve quickly! Your positive thoughts and inner strength will pull you through Jos!

    Steve

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  28. Hi Jos! I want to share a quick story with you about a friend here in Hawaii who recently had a bone marrow transplant. About a year ago he went out for a bike ride, felt a little sluggish, and decided to see his doctor. Turned out that he had advanced-stage leukemia! Two days later, he left his job and family in Hawaii and checked into a bubble unit at a hospital in Houston. After a few months of unsuccessful treatments, he had a bone marrow transplant… Jump ahead to two weeks ago, he shows up the club for a round of golf. First, he looked GREAT. All of his muscle tone back, he looked like an ox. And in the best mood ever, because he had been through hell (as you know!), survived, and was back to 100%. He told us he’d just started playing golf again, so we didn’t really know what to expect. Then he proceeded to go out and shoot five birdies in 18 holes, and clean out all of our wallets in the process. By about the fourth birdie, we were convinced that the bone marrow hadn’t really come from his brother, but either Ben Hogan or Tiger Woods. The moral of the story is — Stan not only survived, but he came back better than ever. So much admiration for him, and you. Hang in there, stay positive, and keep fighting! We love you!!

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  29. Hi Jos and Todd,

    During my late highschool and early college years I had a girlfriend, Becky, who is the love of my life. Her family has been through a few medical issues, one being a bone marrow transplant. Greg, Becky’s brother, got cancer and had to have a bone marrow transplant with Becky as a donor. It has been over ten years and he is going strong. You will beat this and be stronger because of it!

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  30. Hey Joselyn:
    I am glad you’ll get to move forward, get the bone marrow transplant and KICK this thing in the butt! As I think I mentioned a while back – my cousin in England who’s about my age was diagnosed with lymphoma (not sure which kind) and she was critically ill – in the hospital and with specialists and all that until they figured it out. She got a bone marrow transplant and since then she’s been doing great! It all happened a number of years ago and as far I know she’s back to normal and doing everything she wants to do!
    Stay strong Joselyn!!! Get through this rough part and there will be smooth sailing on calm seas ahead! You can do this and it will work!
    Sending bunches and bunches of good vibes your way!
    Love to you and Todd!
    Karen

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  31. Love, strength and BTW you have BEAUTIFUL legs!! Layn Phillips gave a bone marrow transplant to his twin Lyn (sp) and it was a huge success. Lyn now apparently can’t sit still and is traveling all around the world. Does this remind you of anyone??!!!! Tammy Osborne (Gordon’s mum) successfully has had this procedure as well. Both of these people are at least 5 years out. Sweet dreams to you, love your friend Ro

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  32. Jos. First of all, don’t be alarmed. But – I am NOT on a beach in the Virgin Islands right now. I’m waiting on deck to do what I can – maybe give you a nice Christmas gift. And – as a totally random yet wonderful coincidence… I ran into Lee and Wendy Smith last week at Total Wine & More (no, I’m not a paid spokesperson). I’m sure you remember – Mom & Dad’s “old” friends from the tennis club. He had a BMT over 20 years ago and I have to tell you – he’s got to be 75 or so and he looked tan, rested and ready to kick some serious ass. Total recovery!! That’s what my marrow’s talkin’ bout. Love Leas

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  33. Hey Itchy RockStar, Mary will share the story of my brother’s success with his BMTransplant; but also my neighbor Prissy Eeds had one of the “really bad” leukemias about five years ago and her City of Hope BMT kicked the Bruin out of her. She’s rockin’ and rollin’ now…just as you will be. This too shall pass, m’love….FIGHT ON!!

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  34. you never cease to amaze me…you are awesome and can fight this hellish disease…..hope all goes well if you have tohave the bone narrow transplant….I continue to pray for you:) xoxo thinking of you friend:)

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  35. Joss, we hate to see you facing such a procedure, but you are a strong amazing fighter. You can do this. Successful outcomes from BMT are very high and you have the most perfect match. Leason is your gift for a long life. Again, you can do this. You are a warrior woman! Your life of travel and adventure and fitness has given you the perseverance you will need. Again, you can do this. With Todd, your most amazing partner in life, you will get through it. You have always been remarkable at everything you do. You will emerge the victor. You can do this! xxo

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  36. Keeping you in my thoughts and prayers! I am in awe of your courage and humor during such a challenging time that would surely break most people. What an inspiration you are!

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  37. Hey Jos,

    That’s so cool LB volleyball team is on board. Thinking of you here in St. Lucia and sending sunshine and good vibes your way. We miss you and hope to see you soon. Keep up the fight and kick that damn disease!

    -Bret and Chad

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  38. Jos, just had a great conversation with a friend, who has a very good friend who went through a successful BMT a few years ago for a rare form of cancer. I think he had his at COH too, simply the best place to be for it. He emerged and has been living a full life. You will too my friend, you will too. Love you

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  39. Sounds like you’re in a very tough transition from a long slog through an extremely difficult procedure that didn’t have the results you’d hoped for and the prospect of a new strategy with its own hopes and challenges. And you’re doing all that from inside a body that has huge daily struggles and pain. Wow, you’re so my hero!

    I’d like to share something that has really helped me in my darkest days. Barbara Kingsolver is solidly in my top five favorite authors, and that’s saying something! In “High Tide in Tucson” she writes:

    “In my own worst seasons I’ve come back from the colorless world of despair by forcing myself to look hard, for a long time, at a single glorious thing: a flame of red geranium outside my bedroom window. And then another: my daughter in a yellow dress. And another: the perfect outline of a full, dark sphere behind the crescent moon. Until I learned to be in love with my life again. Like a stroke victim retraining new parts of the brain to grasp lost skills, I have taught myself joy, over and over again.”

    Holding you in my heart,
    Marjorie

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  40. Hi Joslyn- Micki Rach forwarded your blog. My husband was diagnosed with a rare cancer 6 years ago. He had chemo, but the cancer immediately returned with a vengeance. He then had two rounds of high dose chemo followed by stem cell rescue. He is now alive and well… although a pain in the ass at times. Unfortunately, I can’t attribute that to the cancer or the transplants. The transplant was not a cake walk. He started as an outpatient and then was admitted about a week into the procedure. If you want more of the play by play, you can check out his caring bridge page. http://www.caringbridge.org/visit/johnwoehlke

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  41. Have you tried Vaseline on your dry skin? Or just plain baby oil! Go bruins!! Haha
    Hope today is a better day for you and I know tomorrow will be a good day watching the BIG game!!!!

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