O N E T H O U S A N D D A Y S

My amazing friend and super supporter, Jared Reichbaum of Walking Across Amarrowca and epic beard-growing fame, is already in Colorado, quickly making his way to California!  Simply stupendous in every way!  His goal is to arrive in time to complete the last official leg of his incredible 7-month journey at the Be The Match Walk+Run in Long Beach, CA on Saturday, November 14.  We have formed a Walking Across Amarrowca team for the event, and we’d really love for you to participate!  Jared and I, along with my bone marrow donor/life-saver/brother, Leason, and our families will all be there, and it would be fab if you could  join us by either walking the 5K with us, or by supporting our team from afar.  By raising awareness and funds, we will save many more lives.  Thanks tons!  

Walking Across Amarrowca 5K team page

My Personal Fundraising Page

1,000 days.  One thousand days  (say it with your best Dr. Evil voice)  I know – that sounds like a loooong time.  Any figure with a comma is a f-ing serious number, and 1,000 days sounds a LOT longer than 148 weeks or 34 months or 2 years and some amount of months that I don’t feel like calculating, doesn’t it?  My 1,000th extra day of life was AWEandthenSOME!  To mark the occasion, Rex and I went to the Big Apple for some mother/son adventure.  We stuffed ourselves with some of the concrete jungle’s best grub (taking care to avoid spicy or salty, lip-igniting bites).

Central Park's Alice in Wonderland sculpture. Can you spy the creepy crasher?
Central Park’s Alice in Wonderland sculpture. Can you spy the creepy crasher?

We hiked an afternoon away in Central Park.  We took in the multi-Tony winner, The Curious Incident of the Dog in the Night-time.  We admired my favorite piece of architecture EVER – the Guggenheim Museum.

Rex got security a little bent with his close proximity to Vincent's Starry Night
Rex got security a little bent with his close proximity to Vincent’s Starry Night

We did a high velocity viewage of MOMA’s best offerings.  We literally walked into the Museum of Modern Art at 5pm and were told that they start to clear the galleries at 5:15pm for their 5:30pm closing.  We zipped through van Gogh, Picasso, Monet, Matisse, Dali and Cezanne in the first 10 minutes then went through Lichtenstein, Pollock, Rauschenberg, Rothko and Warhol in the next 10.  As we were being shooed out of the building, we took in a special exhibit of architecture and design in drawings and photography.  We came.  We saw.  We crushed.  Unfortunately, we did not get to crush a Yankees game, as planned, due to rain, so we parked ourselves on barstools at PJ Clarke’s and drowned our soggy sorrows in Goose Island IPAs, Brooklyn Lagers, crab cakes and sweet potato fries.  We experienced the very emotional 9-11 Memorial on 9-11, alongside hundreds of NYPD and FDNY in dress uniform and hundreds of families remembering lost loved ones.

Serena vs Venus. The Donald was sitting right below us. I watched his hair more than the match.
Serena vs Venus. The Donald was sitting right below us. I watched his hair more than the match.

We took the 7 train out to Queens to witness several matches, including the Battle of the Williams sisters at the U.S. Open.  Rex caught an autographed ball launched into the crowd I’m serious I’m not lying.    We worked the sidewalks and the underground rails back and forth across the city, covering miles upon miles, many of them under umbrellas ellas ellas.  I could not have felt more alive on my 1,000th bonus day of life!

OK, I know I seem obsessed with my ‘before i kick the BUCKET LIST.’  I am.  Obsessed.  I feel like I’m on a second chance mission to truly LIVE and experience all I can while I’m still here.  I have recently crossed 4 more morsels off the list 🙂

Learning how to blow glass was a mind blowing experience!
Learning how to blow glass was a mind blowing experience!
Ta da!
Ta da!

First, I blew a piece of glass (check) at a cool little studio in Crawford, CO with my mom and Mychaela in July.  So fun!  So hot!  Like literally 2,000 degrees hot.  Like melt your face off hot.

Then, I earned my Advanced Open Water SCUBA certification (check) by completing additional online coursework and making 5 specific advanced dives with Todd and our dive master. One of those dives was using an underwater scooter, which was a blast! It was like a dirt bike and a fighter jet had an aquatic baby. You can haul ass over, around and through coral reefs, just like the fishies, except you don’t have to move your fins. You save tons of air, because you are not working at all, you’re just along for the ride 🙂 Our final dive was a deep dive (90+’). We have easily dropped to that depth from a boat many times, but from a beach with a gradual slope, it can be quite taxing, so we decided to use the scooters again in order to get out to the deep water quicker. Early the next morning, we suited up with larger capacity tanks, and grabbed our heavy ass scooters. Out through the surf, following the bottom straight out into the Alalakeiki Channel (between Maui and Kahoolawe) we went. Ninety feet or bust. We got out there lickity split.

Todd, a turle and I are on our way out
Todd, a turtle and I are on our way out

High (actually low, really low) 5’s all around on the sand, 90′ below the surface.  Time to head back to shore and celebrate our new certification level!  Air and scooter battery levels were looking pretty good.  At that depth, though, you cannot use the sun or surf markings in the sand to determine your direction.  And there were no coral formations to follow.  No problem, of course we had our handy dandy compasses to guide us.  So we were just cruisin’ with our dirt bike/fighter jet aqua babies pulling us swiftly homeward.  We noticed our compasses were kinda acting a little funny.  It was really getting difficult to keep the needle steady.  We put all three together, and sure enough they were all spazzing out (haven’t used that phrase since 7th grade at Hewes Intermediate).  Our dive master, Jay  gave us the international “head to the surface” sign.

Wow, the chop was really big.  Huge, actually.  We shut off our scooters, and were struggling to hold onto them (being such heavy dead weight), trying not to take in gulps of salt water as we rode up the crests and down the troughs.  We determined that there was a strong current taking us off course and f-ing with our compasses.  We could easily see the beach we were aiming for (about three-quarters of a mile away), so this was not a problem.  The plan was to dive to about 30′, well under the swell, and head in, surfacing as needed to get a visual.  Todd’s scooter had completely died by this time, so he was just going to hold onto Jay’s with one hand and drag his behind them.  Our air supplies were starting to get to lower levels than we would have liked, too, due to the current pushing us off course.  Nothing to panic about, but we needed to head in.  Okay, perfect plan.  Simple Simon.  I’ll just put my regulator back in, start up my scooter again, head down with my dive partners and….WTF!  Where the f ARE they???  360.  Nothing but open water.  Up.  Down.  Nothing.  No one.  Nada.  I screamed my favorite four letter word a few times into my reg.  Checked gauges.  Getting lower on air.  Getting very low on scooter battery.  Remembering our earlier conversation about all the tiger shark attacks that had recently occurred exactly where I was at that moment.  Alone.  Dressed in a black wetsuit (sensational seal costume).

Riding my dirt bike/fighter jet love child
Riding my dirt bike/fighter jet love child

Then suddenly, c a l m.  I have a shituation, but the shituation doesn’t have me.  Just get to the surface and kick to shore, Jos.  Any shore.  Up I went.  Again the huge ass swells.  As I rode up each peak, I did a quick 360, trying to find Todd and Jay.  I knew they were probably panicking at this point, not knowing WTF had eaten me.  No Todd.  No Jay.  No more scooter juice.  I filled my vest with air from my tank, since I decided to stay at the surface, flipped on my back, and started kicking for the closest beach, dragging my dead scooter along.  My only concern (aside from large teeth hacking my flesh) was that the current may be too strong and I’d be on my way to the Big Island.  Aloha!  Just as I was settling in on a kicking cadence, I heard a very faint “Jossss!”  I looked around and saw two tiny bobbing heads in the distance.  We slowly made our way to each other for a mini reunion celebration before kicking together towards the closest beach, which turned out to be Kea Lani.

We eventually came through the surf in front of the hotel there, scaring the sh*t out of some tourists frolicking in the waves.  We dragged our scooters up the beach, helped each other get our larger, heavier-than-normal tanks off our backs, and wiggled out of our wetsuits, exhausted.  Jay called for his colleagues to bring some carts to take our hefty equipment back to our launch beach.  I believe we earned our certification (and the accompanying mai tais).

My wheels for 6 speedy laps
My wheels for 6 laps

Next, I hit the race track (check).  I arranged to have an instructor sit shotgun in a Lamborghini Gallardo and coach me and 552 horses around a track at the Las Vegas Motor Speedway.  I attended a pre-drive course then a practice lap as a passenger.  My fellow students were guys with tons of track experience, who looked at me with the ole ‘who is this broad?’/ ‘as if’ glance.  Then it was my turn to don a driving helmet and get behind the nervous sweat drenched wheel.  This is how it goes:  Floor it to just before the apex of a turn.  Slam on the brakes.   Start the turn.  Ease off the brakes.  Hit the accelerator. Complete the turn.  Repeat over and over following the straightest lines possible.  There were tight turns, banked turns, S turns and one short straightaway, where I reached 120mph with the throttle on the floor before being scorched by a passing Ferrari.  I didn’t know there were going to be other drivers on the track with me.  That minor detail ratcheted up the intimidation quotient to holy sh*t we’re all gonna die level.  Not sure if the racing company was aware it was one nervous twitch away from a million dollar fender bender.

Holy Holy Holy Sh*t!
Holy Holy Holy Sh*t!

Finally, I careened down the 2002 Olympic bobsled track in Park City, UT (check).  They make you watch a terrifying video before you are allowed to sign your life and children’s lives away.  They pretty much tell you you’re going to either 1. die (if you’re lucky) or 2. suffer harrowing, merciless, cataclysmic pain and mutilation.  Super!  I signed on the dotted line and was on my way up the mountain.  They stuck a helmet on my what-soon-may-be-severed head, strapped me in, and told me the number one rule was to remember to breathe.  65mph and 4 g’s is something to be reckoned with.  I tried to reckon like I’ve never reckoned before.  That ride was RADASS!  I still have black bruises along both deltoids where I was violently shoved into the sides as the sled instantly went 90 degrees to the left then right.  More battle scars 🙂

My Bucket Book
My Bucket Book

I keep track of my list in this handy dandy bucket book, given to me by my dear friendlies, Karen (Karona) and Sharon (my my my my Sharona).

My new friends - the swimming delegation from the tiny Kingdom of Bahrain
My new friends – the swimming delegation from the tiny Kingdom of Bahrain

Something that should have been on my ‘before I kick the Bucket List’ was truly one of the most wonderful experiences of either of my lives. I volunteered at the Special Olympics in Los Angeles. Meeting all those athletes, coaches and fans from 200 countries and sharing in their sheer joy was magic!

11940225_10104131576080247_1526650453_nMy friend, Lisa is a wild, wacky and wonderful cartoonist, and I just love her latest creation:  encourage mint!  If you or someone you know is facing a health challenge, or any life challenge, Lisa’s masterful work can provide some much needed encouragemint 🙂 facebook.com/peadoodles

I came across this amazing Taylor Swift parody of Bad Blood, and I love it!  It hits the bullseye for getting the message out about the need for Be The Match Registry members!   Bad Blood

Jared and his pal, Emily
Jared and his pal, Emily

Jared continues Walking Across Amarrowca!  He is currently in Denver, CO, his 10th state.  He’s way past half way and swabbing dozens of new Be The Match Registry members 🙂  Here’s a news broadcast featuring an interview with Jared:  kmtv news story.  While visiting a Nebraska hospital, he met a 12-year-old patient, Emily, who is battling multiple health issues, including a rare form of dwarfism, kidney cancer and myeloma, for which she’s searching for a marrow match.  The two became immediate friends, spending most of the day playing together in the hospital.  Jared was so moved by his new friend, he asked her to sign his cart, and has now officially named it Emily!  The following day, Jared continued his walk westward, and he received a message from Emily’s dad letting him know that Emily had just slipped into a coma and was non-responsive.  Jared, being Amazing Jared, Ubered 25 miles back to the hospital so he could be with his friend.  Emily did not wake up during his visit, but after several days, she did!  She has some challenges to overcome, like learning to walk and talk again, but with her family and friends like Jared, she’s on her way!  I think of Emily often and wish her the very best!

Hey wait a minute!  Wait just a minute.  I have not reported anything regarding my health or the lack thereof.  Nowadays you must suffer through remarks of unremarkable exploits.  Sorry (not really), but long gone (hopefully) are the days of delightfully entertaining tales of bloody drool, gaping thigh gashes and hip bone drill sites.

OK, OK – just for old times’ sake:  My heinous thigh biopsy site still gives me some gnarly twingy pain a couple of times a day, the floaters in my right eye have broken up a bit more, causing even more “bugs” flying across my field of vision, my lips and cheeks are flaring with rough red patches and my brain continews too Miss Beehaive.  At my last visit (still monthly) to City of Hope with Dr. F, I had AFBT (Another F-ing Blood Test) followed by AFBS (Another F-ing Booster Shot) then AFBS then AFBS then AFBS then AFBS.  I am now officially finished with all the BS (Booster Shots)!  Eyes, lips and skin still doing their thangs, but that’s not stopping me!

Custom 'You Only Live Twice' Cons
Custom ‘You Only Live Twice’ Cons

After all the bandages, masks, blood access ports, and IV trees, my new favorite accessories are my YOLT kicks.  I like them 1,000% more 🙂

I just received word that heaven has another angel.  Mychaela’s special young friend, Arbor, just lost her battle with relapsed leukemia.  Several months ago, she had a bone marrow transplant, but was left with a very weakened immune system.  She just couldn’t fight off the infections.  It absolutely breaks my heart that this adorable 14-year-old has left her loving family and friends much too soon.

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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).

21 thoughts on “O N E T H O U S A N D D A Y S

  1. You’re one busy bee! I absotootley love that you’re living it up! I enjoyed reading about your adventures and I can’t wait to hear of many more! 😘 Wishing you all the best. With love, Melanie

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  2. WOW, Jos….you are thoroughly enjoying every moment and then some!!
    Thanks so much for sharing and I continue to pray for you….you are an incredible woman and a remarkable example of courage and GRIT! l just love reading about all of your adventures!! Again, sooooooooooooo INSPIRING….and as usual, your humor is not only incredible, considering all you’ve endured, but truly hilarious!!
    Love you & so our ‘angel’, Ryan 🙂

    Liked by 1 person

  3. Every time I read your posts I get some new “street lingo”. Very impressed with your hipness. But even more impressed with your adventure a minute life style. You are Joqelyn Cousteau with that crazy scuba story. And when you do finally hit terra firma you jump into high speed vehicles. Love it! Thanks for being such an inspiration. And so sorry to hear of Arbor. Take care, Stacy, N8, Elory and Elias

    Liked by 1 person

  4. Joselyn…I love reading about all of your adventures! When is your book coming out?
    Love your humor and detail of your bucket list adventures…and so glad you are feeling up to doing them! xo

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  5. Jos, We got tired just following your adventures! You are one lucky girl in many ways, but you have also made your own luck by being so tough and resilient. Your two lives are a most amazing story that continues to unfold and continues to get better and better. The friendships and the awareness you, Todd, Leason, Rex, Mychaela, Jared, Emily, Arbor and many others have created have already benefitted others and we’re sure new friendships and awareness will continue to be a benefit into the future. You are serving as an inspiration to others – an example of no metter how difficult things become, they can be overcome with great spirit, tenacity, humor and love. We all love you. Lynn and Carolee

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  6. Wow and double Wow, Jos…Loved your piece and I am so proud of you and love you….You are quite an inspiration to all who know you and what you have gone through…Keep crossing things off your bucket list…xxxooo Auntie Caryll

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  7. HOW BLESSED I AM TO HAVE MY MIRACLE DAUGHTER LIVING HER LIFE TO THE FULLEST!!! I AM SO PROUD OF ALL HER AMAZING ACHIEVEMENTS AND AM ESPECIALLY PROUD HOW SHE LIVES HER LIFE CARING AND SHARING WITH EVERYONE SHE KNOWS ESPECIALLY WITH ME!
    LOVE, MOM

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  8. Seriously Jos…you’re one adventurous girl! I could feel my heart racing with your scuba dive story…so scary and so out of my comfort zone. Wow to all the things you’re doing on your bucket list! Keep posting!!!

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  9. Good Morning Jos:

    Your Blogs continue to amaze your Old Man. I only hope that you don’t do so much so fast that it hurts you, but what you are doing is truly unbelievable. I am oh so proud of you !!!!!!!!!!!!!

    Love,

    DAD

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  10. So Jos, Another amazing report!! You are an inspiration for me, that’s for sure. BTW, I attended the iorigianl unveiling and dedication of the Alice in Wonderland bronze statue by the Sailboat pond in October 1956 that you visited.My 4th grade class was invited on behalf of all students in NYC to represent them. Now that’s about as close to any of the miraculous feats with which you are filling up your bucket list lately. Gotta luv Amarrowca and the Jos Journal of jazzy jirations!! Keep it up.

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  11. It is unbelievable what you have gone through. I am amazed at what you are doing now with still many problems. I really like reading your blogs, and with your wit and
    sense of humor, you are a wonder. Please keep writing. Love, Sharon Tutwiler

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  12. Jos:

    This Brawl reads like an enchanting novel. So exciting as you tally off the things you want to do after one thousand days since your illness was defeated.

    You are hitting some of my favorite places…. I admire and love you and your Sunny and Bro so much for being able to have the time to do these activities together.

    My love Sweetheart especially to Toady…

    Keep sending these chapters as I enjoy them so much.

    With love,

    Auntie Char

    Sent from Windows Mail

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