It Was the Best of Days, It Was the Worst of Days

Increasingly nauseas, developing big white sores on my gums, itching all over my entire bod, numb and painful feet, blistered lower lip, sore (streppy) throat.

Todd emailed Dr. Fantastic on Sunday evening with these charming newest symptoms, and he immediately replied with, “Come in to see me tomorrow, I’ll squeeze you in.”  So yesterday I drove to Todd’s office to pick him up on the way to Duarte.  We agreed I would drive so Todd could eat his ‘to go’ lunch and make some business calls.  I didn’t mind at all – we were cruising northbound in my new Merry Christmas/Happy 100th Day Post Transplant/Happy Birthday/Way to Kick Ass on Two Diseases sled.  I know the next part you’re gonna call bullsh*t on, but I pinky swear it’s true.  The 405 and 605 went very well – no issues.  Then Todd’s lunch scraps started smelling a little foul.  We came to a screeching halt on the 605 to 210 transition and all the truck fumes added to my queasiness.  We exited at Buena Vista and as I was making a left across 4 lanes of traffic, I grabbed Todd’s Styrofoam tray and hurled.  It was very watery, due to my massive hydration prior to blood tests, and it was bright yellow, due to the Mepron medication I took about an hour earlier.  Picture neon yellow liquid sloshing around the shallow, flimsy non-biodegradable container, spilling over as I make another left turn, taking care not to hit the median, and add more barf to the collection.  “Pull over!  Pull over!” yelled Todd.  I did and I looked down to eye the damage.  75% yellow vomit all over the crotchal area of my white shorts, 5% on my new Rodriquez t-shirt.  F-ing awesome!  Not one drop on my new interior!  No chance of offing my new car smell prematurely.  Skills!  I asked Todd a question I already knew the answer to:  “Do we have any napkins?”  The only thing we came up with was a surgical mask, not known for their absorbability.  My profound sympathy and apologies to the residents of the house whose yard we used to deposit the remaining 20% of the styro tray contents!

Todd drove the remaining 3 blocks to City of Hope and dropped me off at the front entrance.  I was so f-ing nauseas!  Let me remind you, I have a very large embarrassing yellow stain all over the crotch of my white shorts and gooey trails of vomit and tears streaming from my face.  As I entered, the overly cheerful greeters at the front door sang out in unison, “Welcome to City of Hope!” all I could muster was “mmmmmm.”  I felt kinda like Dan Akroyd in Trading Places when he’s dressed like Santa and has that rotten, disgusting salmon caught up in his beard.   article-2291222-188DCC68000005DC-365_634x321I darted straight to the ladies’ room and started cleaning myself up when a nice looking young woman entered with what appeared to be no urgency and locked herself into the first stall.  She proceeded to orchestrate a deafening diarrheal display.  (I hope you are taking note of this expert descriptive example of alliteration, Mrs. Cleveland, my 7th grade English teacher.)   This young girl would no doubt receive straight ‘10s’ from the entire panel of international judges.  I took the next stall and continued hurling.  In between pukes, I said, “Wow, we’re quite a pair, aren’t we?”  She either did not appreciate my sense of humor or (more likely) didn’t speaky de English.  From there, I was off  to my blood draw, where I immediately asked the nurse for a plastic basin (during my 90 days in the hospital, I had one 24/7 on my lap as a security blanket on top of my actual blanket).  As the nurse poked and drew blood out, I threw up into the pink plastic.  I was seated in the first chair, so every patient had to pass me, probably thinking I was a pussy who couldn’t handle a f-ing needle.  Ha!

I continued on to my appointment with Dr. Fantastic, continually emptying and re-filling my barf basin.  He took one look in my mouth, asked me a few questions and diagnosed me with Graft vs. Host Disease.  This means that Leason’s cells and my cells are fighting each other.  Dr. F. threw in a couple of f-bombs in his description of the disease and our plan of attack.  He is so awesome!  He added 5 new meds, including my all-time fave ~ Prednisone!  I’ll get to relive all the reasons PAB – Prednisone’s A Bitch.  I was so relieved to learn that I was not being admitted to the hospital, I didn’t really care.  For more info on Graft vs. Host Disease: http://marrow.org/Patient/You_and_Survivorship/Treating_Complications/GVHD/Graft-versus-host_disease_(GVHD).aspx

coh blood 1We then looked at my blood counts that were back from the lab.  For the first time since my brawl began (exactly a year ago), my whites, reds and platelets are in NORMAL ranges!  After wishing for such results from 261 blood tests over the past year, this was AMAZING news.  I even have higher white cells and platelets than my brother, Donor Leason IV!

Best Caregiver Ever Todd arranged for my new meds to be ready for me immediately, so I could get my arsenal well stocked for my newest battle.

bmt-2013Todd, my parents, Leason IV, Mychaela and I  attended the 100th birthday of City of Hope and their 37th Annual Bone Marrow Transplant Survivor’s Celebration of Life.  It was an incredible event.  My doctor (Transplant Department Chair), Dr. Fantastic, was a perfect master of ceremonies.  Seeing survivor buttons with 35+ years was so inspirational to me (with 4 months on my button).  Leason received a donor button, and he had countless people come up to him to congratulate and thank him.  Several survivors met their life-saving donors for the first time – some flew in from Europe for the event.  So very emotional.  I wish I could be a donor, but alas, no one wants my f-ed up marrow 🙂  If you would like to be someone’s life-saving hero, sign up at: http://marrow.org/Join/Join_the_Registry.aspx

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My 4 month button
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Mom and brother Leason, my life-saving donor
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My Dr. Fantastic, Master of Ceremonies
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Leason and Best Caregiver Ever, Todd
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Me, Dad, Mychaela
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Me with Todd
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Me with Leason

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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).

44 thoughts on “It Was the Best of Days, It Was the Worst of Days

  1. Great photos!! Keep up the good work!! Have you cooked any fantastic recipes from the zov book I brought o you?

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  2. Jos,

    Doug and I are SOOO f’ing mad you are having this new challenge!!! Just NOT FAIR. However, we have the upmost confidence this will be a hurdle that you fly over quickly and land safely. Hope you feel us helping you hurtle through it!!!

    Love, a lot of it, coming your way!

    K and D

    IPad – Kristi DeCinces

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  3. Looking at those beautiful pictures of stylish you, one has a hard time imagining you cruising into COH with your highlighter yellow stained white shorts. Thank you for finding humor in it – your outlook reminds all of us, your many fans, to laugh at upsets. And this Graft v. Host thing will be a mere blip in the radar. We are thinking of you and wish you a smooth(er) recovery. Love, The Singers

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  4. Joselyn, You are amazing! So courageous! Thank you for sharing your journey.
    Lots of hugs from Vivian and Tran.

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  5. Joselyn, I am so so so so SO sorry for the setback but know you will get through this as well. Sending love, hugs and well wishes for a speedy swift kick in the A*% to graft v. Host disease. Always remember, two steps forward one step back, the steps forward outweigh the steps back. Biggest hugs. Still thinking about you every day..Tracy

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  6. So frigging unfair!! It really seemed like you were sailing along so wonderfully. Very excited your blood values are so great after a very long siege. This GvHD sounds like a bitch but your track record is phenomenal and I have absolutely no doubt you’ll do your usual number on it. I can just imagine how hard it must be to gear up for another round but you and your team are world class.
    Not to sound too much like a schlocky Get Well card but Feel Better Soon, for real!
    Lots of love,
    Marjorie

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  7. Like the great Gilda Radner said, “It’s always something!” Glad you have as great a sense of humor as she did & this, too shall pass. You are a trouper, Miss Jos! XO Barb

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  8. I have been so worried about you since I saw you last week at lunch. I knew you did not feel well. But damn girl your feet were looking so marvelous and you were stylish as usual! The best 3 hour lunch I have had and loved being with you and Barb, celebrating her first marriage at age 50! Ok…you kick that GVHD in the ass with the grace and courage you have shown the last year! We are all here for you cheering you on and supporting you 110%. I love my ENFU buddy and will check on you manana. XOXO, jae

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  9. Hey Jos, sorry about the G-H flair up but as usual we are all more concerned about it than you are, which is a good thing! We know that you will follow Dr F’s orders. Even your food and meds wanted “out of the situation” but you pressed on to COH in your desiger white and yellow print shorts just the same. Every doc wants you for a patient. We are all gald to have you as our friend. Please give nurse Todd a raise. Fight the good fight. If you get those pesky “football” feet again from the p-sone please let Todd and Rex toss them around the yard for their personal contribution toward your end run around G-H for good. Love, Bart

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  10. Jos, You’re amazing! I love reading your blog, I can’t believe you can make me laugh while I’m hearing about you barfing yellow fluid, overwhelming nausea, Graft vs Host (sounds like a law suit gone bad), and losing that new car smell. Your attitude is wonderful and I admire you so much for keeping your awesome sense of humor. You and Todd are so lucky to have each other and to have such a caring family. I’m really glad I didn’t injure L4’s bone marrow in that jet skiing incident a few years back… Best always, “Sheet Metal” Ferro

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  11. Joselyn – you are truly amazing! Talk about feeling the gamut of emotions as I read your blog – I was laughing hysterically one minute – but just so sad the next, knowing you were having to endure all that! What AWESOME news about your blood /platelet counts! It’s just so frustrating that you’re not feeling as well as the results were! You are an amazing writer and you must put your entries into a book when this journey is behind you. You make Mrs. Cleveland so very proud! Thanks for sharing this with me. I am praying for you – and just hope and pray that you will feel better soon. God bless you! xoxo

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  12. Jos,
    Well…as usual when reading your blog, I went from tears to giggles to tears.
    I’m amazed and so inspired by your courage and your humor. No kidding..you are just unbelievably strong. You sure LOOK good!

    I’m soooooooooooooo sorry you are enduring yet another ‘blow’, with that graft vs host disease.( I did read up on it, though I know we both wish we’d never heard of it)!
    May it pass quickly.

    The prayers are still coming your way…and HEALING is the main topic on the ‘request list’.

    Blessings to you Jos…
    Love, Linda….and our ‘angel in residence’, Ry xoxox

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  13. Jos,

    Great news with your blood levels! Yeah! We will pray for your graft vs. host disease symptoms. Thank you for your updates always as it makes us be in the moment with you. You are so amazing and I can’t ever find the words to describe how incredible you are in this journey.

    We love you and are praying daily for you as God always has a plan! Love you! Xoxo

    Dick, Gretchen, Pipes and Hayles

    Sent from my iPhone

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  14. Unfrickingbelievable how GOOD your cell-babies are. And patriotic too, especially the red and white. So, let’s see, according to the blog, there is one sucky drug with awful side effects (whose injections hurt like hell) that you won’t have to re-take because of how good your patriots are. You won’t have to do neuf**ckingpogen, right? Of course PIAB is back for a bit. : ( GvH hasn’t seen the likes of you yet. Ready set go JOS! oxox

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  15. Michalea is beautiful, just like her Mom!
    Mrs Cleveland would be so proud to be remembered in one of the most popular blogs on record!
    So you drive over few more of those nasty speed bumps as found in Emerald Bay, and then you continue moving along your healing path.
    May God bless you and lead the way!!

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  16. I have no doubt and all the faith in the world that you will kick this Jos!
    You are the trailblazer and strongest woman I know.
    Take that you f*ing GvH!
    lot of love and prayers,
    erin ob

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  17. You amaze me on a regular basis and love your updates….praying you don’t have to deal with all this for much longer….Makes me so sad…..xoxoxoxoxoxoxox

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  18. Another masterpiece post Joselyn, read it with such a myriad of emotion… your 7th grade English teacher IS proud wherever she is. Great news about your blood counts, sorry to hear you have to deal with this new development. I would tell you to stay strong but I already know that will happen, so I’ll just remind you that you are an amazing person and I’m sending healing wishes your way. P.S. Love the photos of the event at the City of Hope! Your family is beautiful.

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  19. Wow Jos, just when you think you are starting down easy street (well non of this is even close to an easy street). That was perfect when you said it was the best of days and the worst of days. My stomach went into knots hearing that you were vomiting. Then I was so excited to hear about your blood count. You are amazing to be able to joke about what you have gone through! We sure love you and can’t wait for you to be ALL better! Hang in there! We love you and are praying that this will all be cured SOON!
    love,
    Nancy and Gary

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  20. ah joselyn…..we have complete faith that once again you will overcome this setback. so sorry that you have to feel so shitty in the meantime. you have had far too many of those days. with the amazing care and support of todd and your family you will recover in no time!
    sending our love and prayers to you.

    caron and fam.

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  21. Oh Joselyn, thank you for sharing your miracle. You are truly a miracle and there is a reason you will have a full life, because no one pays it forward more than you. These pictures of your family are priceless. I guess a picture is worth a 1000 words.
    love, Shannon T

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  22. You are flat-out impressive!! How you make us laugh when you are barfing yellow liquid!! Joselyn you look amazing and you will get through this obstacle, too. Love, Cinda and family.

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  23. I hope that you are feeling a bit better. We missed you at The S.A.S get together, but totally understandable. Hope you continue to get better and better!

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  24. Jos….ugh…well, if you had to pick your puke color, at least yellow is bright & cheerful…just like sunny you; always seeing the bright side…keep on shining, Jos. We are cheering for you…and keeping you in our prayers! Xox, Ann & Cooper fam

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  25. Sounds like it’s time for you to open your can of whoop ass again. Only YOU could manage to drive and vomit yellow liquid into a container and manage not to crash the car! The whole story is simply unbelievable, and as always, your writing deserves a Pulitzer! Rooting for the Prednisone to kick the GVHD’s butt ASAP because we know PAB. Love you tons.
    Scott and Robin

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  26. Hi Jos, another unbelievable story…you are amazing. I love the photos of your family! Lots of love. Love, Barbara

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  27. Jos, We are so sorry to hear about your latest battle. We thought you were just about in cruise control, but now another challenge. Hopefully this is a temporary issue and you will be good to go again soon. Your blood counts are great, but the yellow stuff is not. We wish there was a way we could absorb some of your nausea, pain and frustration – we feel helpless sitting here reading your blogs, but your inner strength and sense of humor have brought you to this point and we know will win the day. Keep thinking of those 35 year buttons. You are going to have one of those in 2048!
    Love Lynn and Carolee

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  28. You are amazing- speed bumps are a pain in the A_ _ ! But you are going to knock this one out of the ball park. Sending many hugs your way. xo k&b

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  29. I was at City of Hope on Monday also for my regular check up. Sorry I didn’t see you. I am 6 years out from transplant and still occasionally have GVHD pop up in some way and the issues just have to be managed. COH is the best! The most constant issue I have had for the 6 years is the swollen feet. Some days OK, somedays very good, some days extra swollen and painful. I’m just glad to be above ground and vertical with my life extension and hope to outlive the expectation. Continued blessings to you and hope for your healing. Prissy Eeds….1123 Emerald Bay

    Date: Wed, 22 May 2013 03:32:00 +0000 To: prissyeeds@hotmail.com

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  30. Great news on the blood counts! I am going to hold on to the fact that “Patients who develop GvHD have lower disease relapse rates”. You continue to be my hero. Love to you and your family!

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  31. Sending our love to you, Todd, and your beautiful family. So sorry to hear about your graft v host development, but know that between you and Dr. F, it doesn’t stand a chance!Hope you are feeling better each and every day.

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  32. Jos, only you could make barfing your guts out funny! So sorry to hear the new symptoms! Take your meds & keep up the fight!

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  33. Sounds like it is two steps forward, one back. I’m so sorry to hear that you are suffering this latest battle. I am so excited to hear all of your blood counts are normal – it’s about time, dammit. You and your family are beyond AMAZING. I have so much respect and love for all of you. Wishing you a speedy recovery!

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  34. Oh gosh Jos… I keep praying for you and hoping desperately for things to turn back around. So much love sending your way.
    Kathleen

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  35. IBIJ { inspring,beautiful,incredible,Joselyn} Sorry for my late reply out of the Country .You had me laughing and feeling my heart weeping all at once. The celebration of life at the picnic was touching.So glad the blood work is looking good. Sending you all my love and strength as you FIGHT ON. You continue to amaze and inspire me.
    Love you lots,
    Jennifer, Chanel, Trent, Weston and Savannah ‘Mae xoxoxoxoxoxxo

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  36. Had the most wonderful day with your mother yesterday. She was able to give me the word on her amazing, brave, tough little girl. Glad you have Dr. F and your fab. support group. We are all behind you, but please tell those germs, ENOUGH!!!

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  37. You are amazing, Joselyn! I find myself feeling down as I read your continued challenges, then immediately am brought back up by your “kick ass!/you know who you’re dealing with?” attitude and start cheering on the sidelines along with your throng of followers!!

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  38. Joselyn, we recently moved back to So Cal and I just heard about your condition…our thoughts and prayers are with you. Kendall

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  39. Hi Joseyln! So great to hear your blood counts are up. I can’t wait to see you this summer and trade stories, although I’m sure Shulman would KO Neptune first round in the ring. It’s incredible what you’ve been through. Really looking forward to seeing both you and the family.

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