YOLT

DCIM100GOPRO
You Only Live Twice – Sky High Adrenaline

Wow!  I feel like a big loser poopy head for not writing my 60th post sooner.   I strongly dislike excuses, so I won’t give you one.  I’ll give you 3.  It’s exceedingly difficult to write when you’re:  1.  90 feet underwater 2:   flying towards earth at 120 mph and 3:  clinging to an ice wall with axes in your hands.

I’d like to introduce you to my new mantra:  YOLT – You Only Live Twice.  YOLT is the strangely intense distant cousin of YOLO.  I am committed to making the most of my second chance!

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I’ve always stored a bucket list in my cerebral cortex, editing as I go, but since I’ve been in recovery mode with limited cranial function, I’ve kept a written one, checking off my current ‘to do’ items once they are crushed.  I plan on making many more x’s.  Some items are already scheduled, others are in the works, and I’m confident the remainders and any others I add will be conquered.

Rex and his bag o' life
Rex and His Bag O’ Life

Rex achieved something I wish I could add to my list.  He voluntarily saved a stranger’s life!   Rex made his stem cell donation at City of Hope on November 18.  For the five days leading up to this monumental day, he had Neupogen injections (3 per day) to move his stem cells from his bone marrow to his peripheral blood stream.  He had to alternate needle placement from arms to legs, because of the soreness that set in.  The drug made Rex feel nauseous, but he pushed through.  A volunteer nurse met him at his fraternity annex,  “Severance” or more affectionately known as “Sev” or more realistically known as a terrifying, yet lovable 3-storey pigsty/lean-to/hovel/shanty/rattrap just off USC’s Fraternity Row.  I believe said nurse, bless her heart, showed up in full haz mat attire after the first visit scared the sh*t out of her.  It’s hardly a place you would consider a good venue for sterile procedures to take place.  If you saw the movie Animal House, then you are picturing something wayyyyyy tooooo posh and pristine.  Regardless, Rex and the nurse survived the pre-donation shots and the big D day was upon us.  We arrived at 7:30am and Rex was greeted by Monica, his wonderful Be The Match donor coordinator who had been guiding him through all of his preparation.  He settled into his bed and was hooked up to a centrifuge via an IV in each arm.  He was given his last two Neupogen injections and the mighty machine began to draw blood from his left arm, spin the stem cells out and deposit them in a plastic bag, then return his blood to his right arm.  This went on for about 6 hours, until there were enough cells to transplant into the patient.  From there, the bag was put on ice and couriered by a Be The Match volunteer to the patient’s hospital in Europe.  Todd and I were by his side, as were good friend, Jared and his Uncle Leason, my brother and donor, which made it even more meaningful and special.  While Rex was doing his life-saving at City of Hope, a reporter from The China Daily News came to interview him in an attempt to spread the word on needed donors in the Asian community.  A CBS Channel 2 News crew was also scheduled to make a visit, but the producer suddenly changed the plan, and sent them to cover an explosion of some sort instead.  Rule #83.7:  Explosions trump stem cells.  Up until this point, we had only heard that the mystery patient was a 65-year-old man living outside the United States.  That day we learned that he was in Italy.  We are hoping to get an update on his prognosis, and we hope to be able to meet him someday, although the transplant laws in Italy are quite restricting on donor/patient contact.  Rex also agreed to participate in a special City of Hope stem cell research study by donating his stem cells that were left in all the tubing.  I am beyond proud of Rex for following through on his donation and literally giving himself to a stranger in an attempt to save the life of this likely husband/father/grandfather/brother/son/uncle/friend!

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Getting the Be The Match Word Out
OC Register's visit with Rex, Todd, me and Leason
OC Register’s visit with Rex, Todd, me and Leason

Just prior to Rex’s donation, the Orange County Register came to our house and interviewed Rex, Leason and myself for an article that ran on November 11:  http://www.ocregister.com/articles/joselyn-641636-marrow-bone.html

Rex’s story was also picked up by ABC Channel 7 Eyewitness News.  Reporter Greg Lee contacted me literally as I was in my driveway about to jump in the car bound for City of Hope for my monthly meeting with a needle and Dr. Fantastic.  He wanted to interview Rex and me that afternoon for the 5:30 evening slot.  I worked my phone all the way to Duarte, tracking Rex down, and making a plan to meet once again at his beloved “Sev” with Greg at 1:30pm.  Upon arriving at COH for my 11:30am appointment for AFBT – Another F-ing Blood Test, I became nervous about the time, because the line for lab testing was longer than a snake’s fart.  I somehow got through that mess and made my way to the Hemo Clinic for my appointment with Dr. F.  This is where my momentum came to a screeching halt.  Waiting and more waiting.  Bullet sweating and more bullet sweating.  FINALLY I heard my name called, and Todd and I raced to our familiar room #1.  Dr. F was – of course – fantastic, and my counts were boring/normal/awesome.  He ordered my next round of booster shots as our watches were screaming at us that we had to leave right then and there if we were going to make it to our interview across town.  We waited.  We waited some more.  We inquired and were told that it was going to be another 10-15 minutes.  We had to bail.  I left without my boosters!  We flew down the 210, 605, 10 and 110, careened around the corner on two tires and spied the news van parked in front of the sty.

Rex, Greg and Sev
Rex, Greg and Sev

Screen Shot 2014-11-20 at 6.28.55 PMRex, Greg and Rex’s frat bros were shooting the sh*t, but Greg was definitely ready to go.  He had a deadline.  The interview went great all except for the unfortunate fact that I had left that morning wearing a heinous outfit, no make-up and an idgaf hairdo.  Greg placed me looking directly into the afternoon sun, so my acutely sensitive eyes were squinting and crying on camera.  What ev ~ Rex nailed it:  http://abc7.com/health/woman-saved-by-bone-marrow-transplant-sets-out-to-pay-it-forward/404673/

City of Hope posted our story on December 12:  http://breakthroughs.cityofhope.org/stem-cell-recipient-joselyn-miller

COH's Story

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Weihnachtsmann

On December 14, I celebrated my 2nd re-birthday with Todd and a disarmingly serious Weihnachtsmann (Santa) at the Christmas Market in Berlin 🙂  No child was within 100 feet of this man.  We had a great time sampling hot mulled wine, sausages, schnitzel, and strudel.  We had an even better time concocting a language all our own, based on the Germanesque sounds that surrounded us.  We got some amazingly quizzical glances from the local Berliners from such beauties as schvassesteigel weichtendorfferhopfen eissensweissenkrausendortenmunder.  Go ahead, I’ll wait, say that out loud.  It’s f-ing wunderbar!  If anyone has anything relatively close to a translation, please let me know.

Taking on a Wall of Ice
Taking on a Wall of Ice – YOLT, Baby!

The New Year was celebrated with my family of 10 in Banff, Canada.  A great time was had by all in this winter wonderland.  Sleigh riding, dog sledding, snowboarding, snowshoeing, ice climbing, skiing, tobogganing, bowl game watching, snowball making, and powder volleyballing were just some of the activities that kept us out of trouble with the mounties.

UPDATE:  Blood counts are steady and normal.  Skin and lip fare ups are decreasing in number and severity.  Ya, blood and skin are kicking ass, but Todd and I have noticed a major decline in my navigational skills.

Kinda liking the direction I'm headed
Kinda liking the direction I’m headed

I once flaunted the apex of human gps abilities.  I could find my way in and out of the most confusing effed up labyrinthine neighborhoods.  Blindfolded.  I had an undefeated inner north arrow.  I could see your south southeast exit from the 3rd roundabout and raise you a second from the right fork at the blinking yellow light just after the dog leg u-turn.  I get utterly disoriented with a detailed map in my hands.  I am now reduced to following Todd around.  Yes, the man who gets lost in the personal hygiene aisle.

My eyes are now experiencing fewer problems, thanks to several drops I take daily.  I had cystoid macular edema for a few months, which is when fluid or protein deposits collect and form cysts on the central area of the retina.  This is the most common cause of blindness in people with diabetes.  Luckily for me, it went away after I used Dr. K’s magic drops.  I am now looking (blurrily) at a LASIK-like 5th eye surgery, which we hope will be the end of this eye shituation.  That’s right, I said shituation 🙂

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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).

17 thoughts on “YOLT

  1. jos, outstanding stuff!!
    Shocked that the South Bend trip has not already occurred?!? I am in for that one!
    Also, looking on the list for “attend Jeff’s 60th birthday trip somewhere tropical with Jae”??

    You are living life to the fullest! Make us all jealous!! Have fun!!

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  2. Winderbar Joselyn! Had two years of high school Deutsch. Iffen sie needen a luggage maid, I’ll taggen along for some sehr gut translatten. Und i can beer trinken und schnitzel eaten. Love you wunderwoman.

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  3. Jos,

    Wow! Thanks for the update! Rex is amazing and you, are over the top amazing! We are so happy that your blood results are continuing to be so positive. Happy New Year and love you!

    Co Dick and Gretchen

    Sent from my iPhone

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  4. Your witty writing never ceases to make me laugh! So glad things are going well and you’re back to your amazing travels around the world. How great is it that Rex got to pay it forward! I didn’t realize the odds against being a match were so high. Everything is as it’s meant to be…

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  5. WOW to Rex!! How fabulous, yet not surprising, that he did that. Love the bucket list. I’d like to be in your 100 Best Books book club. And when you say “tiny tattoo”, does that mean you already have a “large tattoo”? Mind is racing trying to think what the tattoo will be, and, more importantly, where it will be. Glad to hear you are continuing to make such an amazing recovery and that you are going BIG with the adventures. xo, The Singers

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  6. Jos, LOL!! My goodness…. you have to be among the rare few who not only maintains a sense of humor, through many trials, but perhaps even magnifies an already great one! Again, I am in awe of your strength and tenacity through the worst of conditions. YOU ARE AMONG THE TRULY AWESOME!!!
    May God continue to bless you mightily, with all of your hearts desires!
    Love to you, Linda…..and always, our angel, Ryan xoxo

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  7. Jos-
    YOLT it is baby! So happy for you and glad you’re living it twice!
    Keep up all the fun and I’d like to join you on a few adventures on your bucket list.
    xoxo, jae

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  8. You are amazing! Through all the adversity you are living life to the max, bucket list and all! You inspire like no other, Jos … and Rex is a phenomenal testimony of that! Keep us updated on your adventures, amuse-toi!

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  9. Happy 2nd anniversary. Did you ever get your booster shots!? Until then you’d better have a big bucket as we expect you to be filling the list for a very long time. The deal with Rex is so mind blowingly stellar, but know that good parenting comes into that equation, But you couldn’t make him do it if he didnt want to so everyone gets Kudos. All this and still time for 40,000 toothbrushes for SAS distribution just in the last month alone! Keep doin’ what you’re doin’ so we can all tell you how proud we are of you, I wanted to congratulate Rex personally for paying it forward but he wouldn’t friend me back on facebook (ouch, really harsh!) so tell him for me. Of course, Nurse Todd is behind you all the way and I knew him before you did! I hope you like the way Delta-Eta of Kappa Sigma turned him loose on the world! Happy 2015 and we expect much more from our sweet Joselyn so keep the posts coming. Love Bart

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  10. Joselyn- Happy 2015! We are thrilled beyond words that you are doing so well. Hitting your bucket list by storm, enjoying family and friends. Then to top it all off, Rex has been inspired enough to donate his stem cells to uncle Vinnie
    In Italy. ( it’s a shame it has to be anonymous. ) If this lucky man does not get the chance to meet the Miller family, he is really missing out. Rex is such a generous, brave young man. You all must be so very proud of him.
    We always enjoy reading your blogs- you look beautiful, healthy and happy. Life is GOOD! Hugs, K&b xo

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  11. Happy New Year Miller Family. You are a very special bunch. Joselyn you are funny and full of life. Keep on writing. Do not doubt that someday you will write this blog in French.

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  12. Jos, we love your bucket list and love seeing you work on it. We just love you all around. Some people with the gift of YOLT might retire to gardening or taking life easier after a life threatening ordeal, but not you. Instead you are squeezing every ounce and fiber out of your life to the joys and cheers of your friends and family. For those of us in the YOLO club, you are a wake up call to get off our bigguncouchenpotatenassens and get out there and experience life to the fullest. Love, Lynn and Carolee

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  13. Up in the air, on the land, or under the sea – you inspire. I am so happy you are getting to do all that you enjoy. XOXOXOXOXOXOXOXO

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  14. dearest Jos and Toady!!

    Life is precious and I am thrilled for you both to enjoy your second childhood again!! Sounds exciting and loved your Bucket List Sweetheart.

    There is still a ways to go to be completely well and you are facing the little “monkey bites” of problems bravely….. Eyes especially….

    Absolutely overwhelmed with Rexford’s proceeding with the bone marrow transplant…. that dear dear boy! Thank him on behalf of me for what he has done to save a life and also to donate more/etra marrow for research that somedeay will save another life.

    My love to Toady and being there to guide you a little until your sonar kicks in again…. You are a team and I send my admiration, love and happiness to you all..

    My love,

    Auntie Char

    P.S. Did you send you e to Brian and Milly??? Please advise so I do not resend.

    Sent from Windows Mail

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