Jailbreak

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Nurse Lisa and this latte gift made for a very agreeable day in lock up

I’ve always tried to enjoy every phase of my brawl as best I can.  I had 2 great days with a very special nurse, Lisa, during this latest stay, and she made my days with her as enjoyable as hospital days can possibly be.  She went out and bought me a decaf 2% latte at Starbs and wrote YOLT on my cup!  I adored nurse Lisa.  All of my nurses were fab, butt one had a strange obsession.  When introducing herself, she was really nice, butt she asked, “So where are your blisters?  All over?”  I responded, “Not much on my arms and legs.  Some on my back, some on my”  “What about your bottom?”  “Well, yes there are a few there.”  “Butt where are the most?”  “I’d say my belly.”  “Not on your bottom?”  WTF

My sixth morning of confinement began at 4am “sharp” with the usual sudden blinding lights and a blood thirsty phlebotomist.  Because of my IV being set in my right arm, blood draws were only taken from my left, and it was getting wrecked with continuous pokes.  When the rounding doc visited me around 6:30am, he said that I couldn’t leave until I finished my entire regimen of IV Acyclovir and all of my blisters would have to pop and crust over.  Now hold on, doesn’t that sound like a 1970’s quick and easy meal?  Can’t you almost recall watching Family Affair, then suddenly an ad for “Pop N Crust” comes on with the ideal family gathered around the dinner table all stoked on the Pop N Crust sitting on their olive green plates?

Pop N Crust
Pop N Crust

“Gee whiz, Mom, this supper is out of this world!  Can we have Pop N Crust every night?”  A couple hours after the doc visit, my room phone rang and my fave PA, Martin (Dr. F’s assistant) called to tell me that the infectious disease doc had just reviewed my case, and I needed 14 days of the med.  I was speechless and Martin could tell I was very upset.  After spending Christmas 2012 in my isolation room during my transplant recovery, I am quite averse to celebrating holidays in the clink.  The 14 day plan meant the Easter Bunny would have to find me on Helford Hospital’s 5th floor and I would spend my birthday in room 5221.

I hung up the phone and was on the verge of crying while my nurse unhooked me from my tree so I could take a quick one armed shower (my IV arm is wrapped in Saran Wrap to be sure it doesn’t get wet).  As soon as the water hit my pocked body, I sobbed.  This was the first time I have ever felt sorry for myself and cried since I began feeling sick in April 2012.  I just couldn’t do it.  I couldn’t spend the next 10 days and nights, including Easter and my birthday, locked in my hospital room getting poked in my left arm and enduring AFTS – Another F-ing Tummy Stick every night.  Other than a relapse of fourletterworditis, I felt FINE, like I could climb a mountain or complete a triathlon.  My vitals were valiant and I had no other symptoms except these f-ing spots.  I pulled myself together, put on some clean pj’s and crawled back in bed.  I was reattached to my med tubes, and just after my nurse left and peeled off her haz mat gear in my vestibule, my phone rang again.  It was Martin, and he said I was going to be discharged that night with plans to complete my IV meds at home.  Shut up!  I couldn’t believe what I was hearing.  Martin assured me that he had obtained approval from the infectious disease doc and Dr. F.  I was to be discharged after my evening infusion.  Euphoria!  Martin rocks and rolls!  Todd arrived, my last dose of Acyclovir was administered, my IV was removed, and I stuffed all my sh*t into plastic bags.

White board highjacking
White board highjacking

Probably no surprise that I don’t do Intro to Hospital Patienting.  I do Hospital Patienting 2.0.  I’m quite certain my nurses were commiserating amongst themselves about COH’s lack of a psych ward.  Please transfer her – anywhere!  I messed with my white board, and we booked it out of there before anyone changed their mind.

I felt like I was in a getaway car after robbing First National.  And Todd thought he spotted a white Bronco in the next lane.  We were Laguna Beach bound and no one was stopping us.

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Beats an IV tree any day

The following morning, my new home nurse, Joe arrived, started a new IV, and taught me and Rex how to take care of my new tubing and how to administer my infusions.  I have these cool little pumps filled with my exact dose of Acyclovir that I hook up to my IV 3 times a day. Todd, Mychaela and Rex have shared duties to flush, clean and infuse my line.  What I was hoping would be smooth sailing, has been a bit of a rough ride.  Some welts appeared on my arm a couple of nights ago.  After a few calls to COH Emergency, my pump pharmacist and Joe, everyone calmed down and I finally went to bed.  The next day my IV just didn’t feel right.

Nurse Mychaela flushing my line
Nurse Mychaela flushing my line

That last infusion was very painful, and my med wasn’t going into my vein correctly.  It was pooling under my extremely tender and swollen skin.  More calls.  Since it was now Easter morning, there were no local nurses available to see me.  Soooo, Mychaela drove me back up to City of Hope, where their amazing Evaluation and Treatment Center nursing staff removed my “infiltrated IV” and replaced it with a new one in the other arm.  Sounds rather militaristic, right?  Not sure what infiltrated my IV, but it was really inflamed and the entire area was black with dried blood that had escaped my vein.

Hopey Easter!

Easter Morning at Hope
Easter Morning at Hope

It’s going to be tough bucket listing during these 2 weeks, so instead of crossing off any adventurous items, I added a Bucket List link to my blog masthead.  I’ve had lots of peeps ask about my List, so now they can click here or on the Bucket List link above to check it out.

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Matt saving a life!

Remember when my awesome neighbors joined my family in hosting a Be The Match donor drive on July 4, 2014 in our park?  We ran out of swabs after registering 200 amazing and generous people.  I reported earlier that a young lady was called as a match and she graciously donated her stem cells.

WELL, another of our swabbers received a call, and he donated his stem cells last week in San Diego.  Matt Austin reports that he felt well enough to walk around the San Diego Zoo after his procedure.  Thanks, Matt!  You are and forever will be a life saver!

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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).

19 thoughts on “Jailbreak

  1. Jos, We love you and wish you the best! Be well, weller, and wellest! (No grammar police, I’m on Spring Break!) Happy Birthday!
    Mary and Chris King

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  2. Oh my gosh, I am so glad that you are out of there and home. I love the way you write so much, and I know I’ve told you this before; I feel like I’m reading a great book when I read your posts. The part that sucks is that it’s not a book, it’s your life and its real. You handle it with such beauty , grace and humor though, you really are my hero! So, just read your bucket list”, which is quite impressive, especially considering that many of the items are checked off! Yay Joselyn!!! Getting a book published? No problem as I see it. You are well on your way, and I will be the first in line to buy it. You and your darling family are always I my prayers. Sending you a big hug and tons of love… XOXO Leslie

    Leslie Figge Chatillon

    Figge Photography

    250 Newport Center Drive

    Suite 104

    Newport Beach, CA 92660

    Phone: 949-644-6933

    Fax: 949-644-4379

    http://www.figgestudio.com

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  3. Jos you have gone through sooooo much. All i can say is u r amazing snd i send well wishes and tons of love💋💋💋sue

    Sent from my iPhone

    >

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  4. Oh my, Jos….you continue to amaze me. You had me laughing and tearing up all within 30 seconds….
    First of all, I’m just so sorry you must continue to deal with all of these issues 😦
    It can’t be easy, yet your cheery disposition shares it in a way that makes it seem almost like it is. Love how you seemingly ‘rise above it all’.
    We all know…YOU ARE AMAZINGLY tolerant, adaptable and beyond positive!
    I am very happy you are HOME…and I know you’re blessed to be there, with your incredible family!!

    Sending love, prayers for strength & of course HEALING. Major healing prayers.

    Thanks for the reminders that I have NOTHING to complain about!!

    Love, ‘Mugs’ and always, angel Ry 🙂

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  5. Jos,

    We are praying for you as always. You are amazing and love you!

    Gretchen

    Gretchen Miller
    Transtar Commercial Real Estate Services
    2101 East Coast Highway #110
    Corona Del Mar, CA 92625
    DRE# 01071427
    http://www.transtar.com
    949-760-4013-work
    949-813-6122-cell
    888-717-2563-fax

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  6. Dear City of Hope Sister….your last 2 weeks have been gnarly!
    god bless you and your amazing Fam. Thank you for sharing and one of these days I won’t be in tears after reading your blog.
    (this time the cool guy giving his stemmies was my cry trigger)
    Love,
    Russ

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  7. Happy Birthday to one tough chica! So glad that you are home with your family and fans. Your bucket-list is great and I have no doubt that you will do it all ♡ YOLT, dammit!!!

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  8. Todd and Joselyn, Brad just told us on Saturday of your new ordeal—bummer. No one should have to go through your drill. Once is bad enough. Our prayers go with you. Just repeat, “I think I can, I know I can”. You are a warrior. There is a light at the end of this tunnel. Bob and Emilie

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  9. I’m so sorry that you have been through so much lately. So glad you’re home and on the mend. It’s amazing that yet another life has been saved because of your bone marrow drive. It’s also so special that Matt Austin was a match. He’s an amazingly kind young man. Not sure if you ever heard the story of the ducklings he saved from a drain on Newport Coast drive… He, like you, has a beautiful soul and a heart of gold. Much love, Mary

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  10. Omg you are so hysterical!! There isn’t much that you can’t handle! You’ve been through it all!! You’re allowed to Cry missy!! I’d be crying everyday if I were in your situation!! You’re strong and awesome and home now!! Yay! Hang in there!!
    Trish

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  11. Wow Jos…. Reading this on the other side of a screen makes me feel so far from you, but your account of this latest hospital incarceration (and ultimate release) draws me closer in, and I truly hope you can feel my loving, healing energy pouting your way. I am so sorry to hear of this crazy speed bump in the YOLT pandemic. Reading of your recent adventures and travels inspires me (as you always have!!) and I know this mere bump will be smoothed over soon. Sending my biggest, brightest, most shiny healing love your way!!!! To the moon and back my friend. Hugs and love 💜

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  12. You are so sweet and hilarious . I’m so happy that you got DC’d. I hope all of your pretty little pop and crusts have shriveled all up and are almost nonexistent . Your home . Now get started planning your next bucket list adventure and designing your outfit to wear doing it. Miss you… So happy you are home.
    Love Lisa nurse from coh

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  13. Unreliable what you have to go through!!! thanks for all the updates Joselyn! Hope you will feel better soon!
    Best wishes!!!!!

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  14. Hey Jos, welcome home!! So glad to hear that. So now you can have pop n crust at home on those olive green tv tables with nurse Todd. Harvest Gold was equally as popular. And only Nurse Todd can check those butt blisters. Keep popping and crusting while another hero you inspired, Matt Austin saves another life. Popo patay petulocula. Those things worth having are most difficult to obtain; and you know the pain of the challenge and the nector of healing more than most. This bump in the road will pass, but please, no more mud facials in South East Asia!! Blessings and love coming your way. Bart

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