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. Charlie Brown really needs to give it up and say something stronger than “Good grief.” There are times when a little bleeping among Lucy, Linus and friends like us would be ACCEPTABLE. But who’s yelling??

    My better behaved self wants to share a video story with you about a mountain guide whose stellar health and fitness did not prevent him from getting aplastic anemia so severely that he couldn’t breathe at sea level. I don’t know this man, from Washington state, whose previous climbs make Rainier look like Saddleback, but I read his story and BMT saved his life, Jos.

    If this link doesn’t work, paste it in and watch him tell his story. It’s abbreviated here, so it won’t take long to watch.

    Love you sooooo! (Yelling again.)
    Kathy

    http://www.seattlecca.org/patient-story/matt-fioretti.cfm

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  2. Jos { MSCW} Most strong,courageous woman!! What an honor…LBHS rocks!!!!
    My heart goes out to you during this challenging time..I know when i have been in some dark times there are a few things that got me through..I set up a very healing environment and honored “ME” { Candles, healing music, bubble baths etc…} I read books that spoke to my soul …Broken OPen Elizabeth Lesser..The untethered Soul Michael Singer…I love to laugh i tried to find something funny to lift me…
    Some funnies You Tube
    ” Very excited pug”
    ” Emerson- Mommy’s nose is scary”
    “Corgi Flop”
    “The sneezing baby panda”
    ” Have you ever had a dream like this?”
    I am sending you healing, love and strength …
    You are a remarkable woman and person that I deeply respect..
    Love you so much,
    Jennifer Miller xoxoxoxoxo

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  3. Hi Jos & Todd….just wanted to say hello and send our love today…David and I, along with our family are cheering you on as you continue into the next phase of fighting this big-bad- boy of a disease…ugh, bummed you are having to endure so much pain. Praying for new hope and healing and for it to HURRY UP & HAPPen…so you will be better soon! You are….STRONG! RESILIENT! BRAVE! BEAUTIFUL! And OH SO FUNNY!
    Keep the faith…xoxoxoxoxoxoxoxoxoxoxxoxoxo, Ann

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  4. Hi Jos- you are truly an amazing testimony of inner strength. Just to write your blog must require stamina to similar to playing 3 overtimes. I don’t believe the toughest middle linebacker, bad ass MMA fighter or hole set Olympic stud could muster up your tenacity. I know its tough , but you ,more than anyone I know can say “put me in coach”, I can do it! You will be put in the game soon! We all love you. Bruce

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  5. Hi Josh
    I’m so sorry you are going thru all this BS! I know you will beat this! Went away last week but you, your family and your strength were definately on my mind! I know you all will be celebrating when this is over as well you should!
    Julie

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  6. Hold on & stay strong, Baby! With you & Todd (& fam) at all times. You know Auntie is praying hard & Uncle J is sending up some mighty powerful & positive vibes. Gentle hugs, brillo scrubs & aloe rubs for all that ails you tonight. Love you sweet angel!

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  7. Hi Joselyn. you know I’ve got your back with so many others.

    AS I SAID, OUR KAPPA SIGMA BRO DAN LUCAS ( SPRING 1988) HAD A BMT IN 1991 FROM HIS SISTER WHO WAS A PERFECT MATCH AND HE IS COMPLETELY HEALTHY AND CURED FROM, IN HIS CASE, LEUKEMIA, (OF COURSE HE TAKES SOME ROUTINE ONGOING REJECTION MEDS) IS NOW MARRIED WITH KIDS AND DOING AS WELL AS IS POSSIBLE LIVING IN MINEAPOLIS. HAHA. THE KEY THEN WAS HIS SISTER’S THEN CALLED 6 POINT MARROW MATCH. THEY MAY USE 8 INDICATORS NOW BUT EVIDENTLY LEASON HAS THE PERFECT FULL INDICATOR MATCH AS DAN’S SISTER HAD FOR HIM PER THE DATA IN THOSE DAYS. TO MAKE THIS BETTER, THEY KNOW SO MUCH MORE THAN THEY DID 20 YEARS AGO FINE TUNING MATCHES EVEN MORE CLOSELY SO “PERFECT MATCH” IS EVEN MORE “PERFECT” NOW THAN WHAT THEY KNEW FOR BRO DAN..

    YOU WONT GET CHEST HAIR FROM LEASON, BUT I RECALL MENTIONING THAT DAN’S HEAD HAIR DARKENED TOWARDS HIS SISTERS DARKER BROWN COLOR FROM DAN’S SANDY BLOND AND IT BECAME MORE WAVY LIKE HERS. HE WAS BUMMED TO DEVELOP THE CHOCOLATE ALLERGY SHE HAD BUT HE QUIPPED THAT AS LONG AS HE DIDNT GET HER ESTROGEN HE CONSIDERED HIMSELF A HAPPY CAMPER!! SO IF YOU WERE CRAVING LEASON’S TESTOSTERONE, TS, YOU WON’T GET IT!

    Yes, they demo your immune system, and bubbleize you in prep for the transplant but you’ve been down that road before and it will sem so minor compared with the results of the BMT that you will cherish the moniker “bubble girl” for the rest of your life.

    Just know how much all of us love you and support you and how fortunate Nurse Todd has said so many times, he is, to have you in his life even before you were married. Of coruse we all agreed!

    As I say every time, if you need anything or want anything the answer is always yes.

    Keep the blogs coming. Your strength through all of this is inspiring.

    Blessings, Bart

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  8. Dear sweet, amazing, loving, wonderful Joselyn and Todd… You are in our prayers, hearts, and thoughts EVERY single day. I pray for you EVERY day, and think about you EVERY day, and my heart is right there with you EVERY day. I just got home from mass, where I prayed for you and asked God for a favor, to heal you soon. I wish I could say something that would make all your problems go away. Ok, I will… Keep up your strong will, beautiful mind, glowing heart, hard work, and know that you have SO many of us praying for you. I attend healing masses, and have had what I beleive is a miracle, happen to me, so now I will ask for one for you. Stay your positive self, and time will heal. I will be thinking of you and your family during this Thanksgiving week, as I am thankful and feel blessed to have you in my life. Love, hugs and prayers to you and your loving family. Love, Rose and Ken and family…

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  9. Joselyn: I know a couple of other people have also had this experience, but I, too, had a dream about you last night. You’re not only in our conscious thought every single day, you have entered our subconscious dream states as well. What I remember most about my dream is that I had gone to visit you, and when I saw you, I was amazed at how wonderful you looked–you were 100% healthy, you were smiling (which is how we all think of you all the time, always smiling), you were just radiant and glowing with excellent health. Also, I remember you being very serene and at peace because you were finally done with all your treatments. You were healed! I remember laughing a little in my dream because Todd was there, sort of in the background, and he was obsessively working on plans for some epic athletic event. (A flashback to our girls’ volleyball matches perhaps?) But I woke up right after the dream, and I felt so happy and grateful having seen you in the dream looking and acting like your old self! So, I choose to call this a premonition. This is what is right around the corner for you. You’re almost there, Joselyn, you’re so close. You are close to getting back to being your own healthy, beautiful self, and you are soon to return to living the life you love. It’s there for you; keep reaching for it. Thinking about you all the time, every single day, even in my dreams. Love, Cathy.

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  10. Joselyn, I pray for you and your wonderful family. I am Sure the BMT will work. It
    has saved so many of my friends. So very happy your Brother is a match. This will just seem like a bad dream a few months from now. I see Peace & Happiness in your future……….Be well & get stronger every day……….my goods thoughts are with you. Sherry

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  11. Joselyn, I talked about you with my in-laws this weekend. How inspiring and full of energy and resilient you are, and how your family and friends are supporting you along the way. I am sure that you will be the best BMT patient ever and you and your brother’s marrow will show this stupid syndrome off once and for all!
    Much love,

    Leticia

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  12. Aloha Jos, my Thanksgiving thoughts and prayers are with you…wishing you a successful BMT and recovery. Your resolve and spirit are amazing. Stay strong and God Bless.

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  13. Jos,
    Thinking of you daily…just wanted you to know several years ago the superintendent building my parents home had a BMT at City of Hope, he recovered and returned to the job site a couple of months later to finish their home. There are so many success stories, keep up your strong positive thoughts. By the way, I did hear on the news the other night that itching is contagious just like yawning…if Todd starts then we will know that its true!

    If the horses don’t kick in, I know the BMT will be successful. Continue to be strong and patient…know that we are cheering for the return of your health.

    Take care my lovely friend…
    xo
    Tracy

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  14. Joselyn Dearest, Jon & I are so thankful this season for a multitude of people, places & things. Love of family & friends, the wisdom of your medical team, City of Hope, Leason sharing with his sister and the medical miracle you are about to receive, BMT. As always, you have a dedicated support group & so many friends cheering & praying for a complete recovery. At last honey, your big day is almost here. Thank God!!!! Sending you & yours a glorious day! Happy Thanksgiving!!!! Maggie & Jon

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  15. Hey Jos~ Thinking of you tons. We were in NY for Thanksgiving and it reminded me of you. With Christmas around the corner, I am reminded of the creativity that you’ve shared with so many of us over the years… and am looking forward to many more years of fun Christmas mail from the Millers. Just keep it simple this year 🙂 You are truely an inspiration.
    xoxo, Kathleen

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