Shark Week Shoutout

Fairly obvi you come out of a bone marrow transplant a far cry from what you went in as, right?  I mean, duh, you have a whole new blood type and an additional DNA, which is your very own unique definition as a living being.  Add to that chemotherapy-induced menopause, and you’ve got the recipe for an unrecognizable selfdom.   What is ‘selfdom,’ Jos?  Selfdom is defined as:  the realm of the self; selfhood.  It could also be defined as a convenient diversion away from the topic of chemotherapy-induced menopause.  If you male types are uncomfortable with this subject, just cover your ears and go “la la la la la la.”  No, jk, I’ll spare you the gnar.  Just know that this whole menopause thing can suck it.

I try to cope with my new and improved self by practicing yoga, meditation and just letting go and getting down with my bad self.  When I’m feeling like I can’t even, I turn to this brilliant Jason Headley guided meditation – it’s two minutes of instant calm.  Go ahead, click the little zen arrow, I’ll wait:

Now, are you relaaaaaaxxxxxxed or are you relaaaaaaxxxxxxed?

So, like I was sayin’, from the crown of my cranium to the flip side of my feet, I’m different. The hairs on the tippy top of my head are not only different, there are fewer of them. The ones that are there, about 7 in total, are now wavy, which is a challenge for the Combover Club. Remembering names of people, places and things are a massive challenge with my new brain.  I would really suck at that game where you have to name things!  What’s that called again?  My new brain also plays tricks on me as I go down stairs.  I often lose the connection between my mind and the legs it is supposed to control.  Handrails are my bae.  Without them, I would have eaten sh*t, tumbling down staircases on many an unfortunate occasion.  Also, I can. not. stand. seeing animals being abused in any way.  I’ve always been sympathetic to this, but now I’m intensely hyper-sensitive to any helpless creature being mistreated.  Oh yeah, I also have no patience for complaining or ungrateful peeps.

Perfectly applied blush - OR - Graft vs Host Disease splotch? I know!! Can't even tell!
Perfectly applied blush  OR  Graft vs Host Disease splotch? I know – Can’t even tell!!!

My eyes are a watery work in progress, complete with irritations and floating spots, causing me to continuously swat phantom bugs out of the air.  Ears have goo oozing from my pierced holes, closing them up for good.  My earring collection is covered by a three year layer of dust.  Deep cracks and sores come and go on my mouth and lips, making it painful to eat anything that’s spicy or salty.  The skin on my face is astoundingly dry and wrinkled, with bright crimson patches on my cheeks.  Score!  Sweet $aving$ on blush!  My dermo has no answers for me; says the steroids are to blame for my FUSUOLS – F-ed Up Super Ugly Old Lady Skin. I’m just gonna skip right over all the painful joints, bruises, scars, dysfunctional organs and other various and sundry quagmires from my bearded chin to my cramped feet.  You’re welcome.

Shoutout to my super duper supporter, Bart, for hosting Todd and me at his beautiful Jonathan Club for a fun and hilarious dinner – my dry, cracked mouth still hurts from laughing so.  My friend, Xavi, answered the call from Be The Match, and donated his stem cells last month, like a boss.  Xavi has now attained hero status.  A thoughtful young lady that joined the Be The Match registry last year at our Fourth of July donor drive has also stepped up to the plate.  Cristina is hoping to save a life by donating her stem cells to an unidentified patient soon.  Jared, my friend who is Walking Across Amarrowca, just hit 1,000 miles on his pedometer, crossed the mighty Mississippi, and entered Iowa, his seventh state!  Jared now carries a fire extinguisher in his cart, because he’s on f-ing fire!

My son, Rex just heard that the man who received his stem cells last November has SURVIVED and is doing well!  We couldn’t be more ecstatic to hear this beautiful news!

In November 2014, Rex donated his stem cells which were immediately flown to a patient in Italy.
Rex’s seven hour collection session at City of Hope.

You and your friends and family can join the Be The Match registry online and hopefully save a life, too:  Click here to find out how!

I’m very grateful to report that my Bucket List took another hit recently as I jumped into the Gulf of Mexico off the coast of Isla Mujeres to swim with this massive, majestic whale shark and 1,000,000 angry jellies!

I am continually overwhelmed by the fact that I am here, able to continue my life by swimming with rare sea creatures and celebrating with family and friends.  If not for my heroic brother, Leason, my loving husband, Todd, my incredibly supportive children, parents, friends, and my brilliant doctors and nurses, my journey would have ended three years ago.  I am a lucky, lucky girl, but not worthy.  Every day is truly a gift!  I wish more people could understand and believe this 🙂

The world lost an angel recently as my beautiful high school friend, Cathy, passed away.  We used to see each other at the Hoag Cancer Center when our treatments would align.  She was so very encouraging and thoughtful – she sent me a bottle of her secret hair tonic.  I was in awe of her head scarf tying skills ~ she always looked so elegant.    I will never forget her kind and gentle spirit.  Rest in peace, Cathy.

Posted by

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).

31 thoughts on “Shark Week Shoutout

  1. hi Jos, It is wonderful to hear all about your state of health and your wonderful
    outlook. You are such an inspiration. I have been going through some rough
    times lately, and your blog made me realize that just being alive and healthy is
    such a blessing, and many other things are unimportant. God Bless you for your
    inspiration and your bravery. Your upbeat attitude is unbelievable. You are, truly,
    an Angel sent from above.
    All My Love, Bonnie (Perry) Tichenor

    Like

  2. First time I have mediated & laughed at the same time. Thank you for that! I love you so much Jos. You were special before, but you have reached new heights with this harrowing, but eye opening (and eye irritating) experience of living your second life to the fullest. I am grateful to your brother & the brilliant doctors at City of Hope for keeping you here on this planet. XO

    Like

  3. You truly amaze me! I am so sorry you have had to go through this. God is smiling and cheering you on for taking this new path and turning it into a positive by inspiring and encouraging many, many people. You keep me going Jos!
    Thank you!!!💗👍

    Like

  4. Jocelyn,

    Thanks for the updates always and so exciting to hear about your travels, too! Congrats to Jared and we hope to hear an update when you join him!

    You are such an amazing person! We pray for you always. Love you!

    Gretchen and Dick

    Sent from my iPhone

    Like

  5. OMG! Seriously! Jos, after years of TRYING to meditate, I can DO IT! Thanks for showing me the way! Living w/ Uncle Jon I certainly have the key words in my vocab, I guess it’s just the way you say them. He will be impressed! My dearest, what a wonderful recollection; you have moved on it kicked SS butt! You are without a doubt one of the strongest loving & living forces in my life. You have your own reality show, THE BIGGEST WINNER! My love to your Miller/Pomeroy team!

    Like

  6. What a great journey of a miracle in your life and the donation of stem cells by Rex. The beat goes on. Bob and Emilie

    Like

  7. Jocelyn,
    Thanks for the updates! I think a lot of you and I am always so happy to hear from you!
    Congratulations to Rex you have such great kids!!!!
    Have a nice summer!!
    Rita

    Like

  8. Jos, it is amazing what you have to deal with on a daily basis. More mazing is your incredible positive attitude toward all the suffering you endure. Living each day to the fullest is a goal we all need to aspire to. Living in the present, moment by moment is the only way to expand time, otherwise the moments slip by and turn into days which turn into weeks. Suddenly we wake up and realize time has passed us by. Shakespeare’s King Richard II said “I wasted time and now time doth waste me”, which is a statement we need to remember. I am glad to see you are not wasting your moments, but are checking things off of your bucket list. Great to hear about the success of Rex’s donation. Hope to see you next week. Lynn and Carolee

    Like

    1. Dear Lynn and Carolee – Thanks for the profound reminder to live in the present! That’s a tough rule to truly follow, but I’m trying 🙂 You two do very well with that one. Time is treasure! XO

      Like

  9. Thank you Jos for always making us laugh and sigh… We do love and appreciate your heroic life and it puts ours into perspective? Have missed seeing you around The Bay but know someone is having a good time at your homestead! Love seeing the lights on…

    Like

  10. Thanks Jos–you are an inspiration. You lift us all up when things conspire against us. It’s great to have a friend like you. Tell Todd , Rex & Macadoodle thanks for the great day at the beach. Keep on keeping on. Love you guys. Pete and Cookie

    Like

  11. Wow, Jos….You have now succeeded in making me laugh out loud AND cry in one remarkable post.Honestly, you have become a teacher to us all….and I only wish, for your sake, that the lessons would not be so ‘troublesome’.  Having said that, you bear up under them like no one I know.Thanks, again, for sharing your unparalleled wit & incredible stamina. You have been heard….and I do look at life differently~not only after losing Ryan, but so much after witnessing your struggles and accomplishments! Thanks, Jos.May God continue to bless you with that gift of writing and sharing. I do pray that he will make your road a bit easier to travel SOON. Much love to you & ‘yours’,             Linda, always and forever, Ryan’s blessed MOM

       “I am sending him—who is my very heart—back to you”.                                                                          Philemon 1:12                From: Joselyn’s Brawl with Shulman’s Syndrome & Aplastic Anemia To: goldilocks90277@yahoo.com Sent: Saturday, July 11, 2015 10:59 AM Subject: [New post] Selfdom, Some Spared Gnar and a Shoutout to Shark Week #yiv4895410995 a:hover {color:red;}#yiv4895410995 a {text-decoration:none;color:#0088cc;}#yiv4895410995 a.yiv4895410995primaryactionlink:link, #yiv4895410995 a.yiv4895410995primaryactionlink:visited {background-color:#2585B2;color:#fff;}#yiv4895410995 a.yiv4895410995primaryactionlink:hover, #yiv4895410995 a.yiv4895410995primaryactionlink:active {background-color:#11729E;color:#fff;}#yiv4895410995 WordPress.com | joselynmiller posted: “Fairly obvi you come out of a bone marrow transplant a far cry from what you went in as, right?  I mean, duh, you have a whole new blood type and an additional DNA, which is your very own unique definition as a living being.  Add to that chemotherapy-indu” | |

    Like

  12. Jos you r an inspiration to my whole family!! Thank you for sharing and reminding us to treasure each other and each day💋

    Like

  13. Super inspiring Jos. Also, hilariously funny and sad all at the same time. Here’s to life!!!! Love to you and your peeps.

    Like

  14. Jos you are truly a gift and we are so lucky to have you in this earth! You are a survivor and your spirit is infectious! Love to call you my friend and here’s to more fun adventures together! I still owe you a bucket list lawn mower ride! Yee Haw! 👍

    Like

Comment (pretty please!)

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s