A Day in the Life (on the bone marrow transplant floor)

While getting this blog organized to be published, I realized I had written virtually nothing about my hospital adventures.  I spent 90 days and nights at City of Hope’s Helford Hospital, but  I never really felt up to writing while I was there, and even if I did – and I know this sounds like a big fat lie – I had no spare time.  I was insanely tired.  I was on Dilaudid (Hydromorphone Hydrochloride), which caused hallucinations to rival any at Woodstock.  In addition, there was a constant stream of individuals in and out of my bubble round the clock.  Even with my chemo brain, I can recall my 2,000 + hours there quite vividly.

Here’s what I mean by extreme fatigue.  It was Christmas morning, and Todd, Mychaela, Rex and I had planned how it would go down.  I had contracted with Santa early in the game, as soon as I knew I would be celebrating my favorite holiday in a small room in Duarte, CA.  I had gifts wrapped and stockings stuffed by early November.  We decided that at 8am, we would Skype each other and I could “be there” for the openings.  As traditional as we could get, ya know?  I had already been up for hours.  Actually, it was a very surreal morning, as one of my favorite nurses came into my room at sunrise and asked me to pick any Christmas carol.  She sang the most exquisite rendition of O Holy Night – really belted it out – as I lay in my bed, focusing on her, then out my window to the sun rising behind the San Gabriel Mountains, then back to her.  Tears streamed down my puffy cheeks.  When 8 o’clock came, I opened my computer and fired up Skype.  I was beyond excited to celebrate Christmas with my family.  Soon, the three of them signed on and set their computer on the coffee table, so I had a fantastic view of them with their gifts piled up on their laps.  We exchanged quick greetings, then Mychaela started to open her first gift…  My eyelids had become impossibly heavy.  I c o  u  llll d  nn o  ttttt  k k eeeee pp  my yyy  ey yyyy essss o pppp e nnnn….  The next thing I knew, I awoke to the banging of pots and pans and lots of yelling.  It was T, M and R trying to rescue my laptop from sliding off my lap and smashing onto the hard, cold floor of my bubble.  My unconsious, bald head was slowly making its way off their screen as my computer got perilously closer and closer to the bed’s edge.  The plan was a failure, as I was not able to stay awake for any gift opening.

As far as the hallucinations, I had some real doozies.  It was very typical for my team of docs and P.A.s to make an early visit to room 6211 on their rounds.  I can remember being awake when they would gather at the sink just outside my door, scrubbing their arms and hands, then putting on their gloves and masks, but then as soon as they entered, my mind would completely desert the present circumstances, and I couldn’t control my bizarre outbursts.   My favorite – telling my team that the giraffe was much too tall for the Winnebago.  Their faces were priceless.  One of them would gently pat my leg and ask, “Joselyn, are you okay?”  I’d snap out of it, and say, “Ya, I’m good.  Sorry about that.”  Then we’d discuss HGB and ANC counts, and they’d decrease the amount of Dilaudid I could launch into my IV by pressing my magic bedside button.

So this is a typical 24 hours of my life at Helford.  It doesn’t sound too exciting, but I really didn’t mind spending my 3 months there.  I was surrounded by photos, a garland of well wishes, a Nerf target consisting of “f-ing mouth sores”, “chemo” and “Aplastic Anemia”, homemade games, Christmas trees, loving nurses and doctors, and my family.

Helford Blog

Fateful Swab
Fateful Swab

BIG NEWS:  Rex has been named as a perfect match for a 65-year-old patient needing a stem cell transplant!  While my entire family was at City of Hope’s Transplant Survivors’ Reunion in May to celebrate my brother, Leason, saving my life with his bone marrow, Rex joined the Be The Match Registry.  About a month ago, he was contacted as a potential match and was asked to fill out a health questionnaire.  From there, he was asked to go to City of Hope and have 8 vials of blood drawn for further match testing.  A few weeks later, he got word that he was a perfect match, and that they would like him to commit to donating stem cells to save a man’s life.  The chances of being called to donate are 1 in 600 if you are on the Registry, so this is quite a rare and amazing honor for Rex!  He recently went back up to City of Hope for a 4 hour physical, which he passed with flying colors, so he’s scheduled to return on November 18 to donate.  He’ll sit for about 8 hours with IV’s in each arm, while his blood is drawn out of one arm, passed through a machine that removes the stem cells, then returned to the other arm.  The cells will then be packed in ice and flown to another country (the patient is from outside the U.S.), where the mystery patient and his doctors will be waiting for it.  It will immediately be transplanted into the recipient, who will have prepared his body with chemotherapy and possibly radiation to kill off his damaged blood cells and his immune system.  This will hopefully prevent his body from rejecting Rex’s cells.  Rex may get to know the identity of this man after one year, if he agrees to exchange information with Rex.  We are all hoping for a meeting.  That would be quite an emotional and wonderful encounter!  The fateful circle of life!

Immunizations
All of these originals were wiped out…

UPDATE:  My vision is on the verge of returning to my pre-cataract bliss, but I developed scar tissue during cataract surgery.  I then had “frickin’ laser” surgery last week to remove the tissue in the hopes of returning to my 20/20, but that didn’t seem to get the job done.  In fact, I had a couple of excruciating episodes of intense sensitivity to light with the most agonizing pain right behind my eyebrow.  I had to keep my eyes closed tightly, not even looking outside in the darkness of night, because the light emitted from the moon was unbearable.  The diagnosis was iritis.  I think the official name should be changed to eyeritis to take advantage of the obvious.  It also just looks like a more staunch disease, right?  If the “frickin’ laser” doesn’t work its magic, I’m probably looking at LASIK in the near future.  Not even in the realm of disaster, but it would be nice to be able to identify some of these blurry blobs in front of me. I’ve had some additional enchanting eczema patches creep up on my arms and legs in addition to 4 or 5 enormous zits placed strategically around my bod.  The largest was a Granny Smith apple sized beauty on my right shoulder blade.  After getting my first round of baby vaccinations (to replace all the immunities lost during the transplant process), my arms were sore, like you’d expect from having 3 needles stabbed into your right deltoid and 4 in your left, but after a week, my right arm had developed a rash, was hard to the touch (even more rock-like than my usual buff), and was quite warm.  It finally returned to normal, but wouldn’t you know I couldn’t have a normal injection fest, I had to BOTFUC – Bring On The F’ed Up Complications  🙂  It has since quieted down.  In fact, I’ve had my first booster shot and look forward to 5 more at my next COH visit.

I couldn’t let this glorious occasion slip by without fanfare, so I celebrated with Disney princess and Hello Kitty (now supposedly not a kitty) bandaids.

Screen Shot 2014-10-12 at 2.22.41 PM
It’s all fun and games until someone eats sh*t

Todd and I recently went on a little vacay to Bermuda, where we hit it pretty hard (scuba diving a 400′ wreck, fly boarding, swimming with dolphins, riding scooters all over the island (on the left side of the road), playing beach volleyball, smoking Cubans, and i can’t even remember what we did on the second day…) I came home with a cold, which Dr. F wasn’t thrilled about. He was planning on starting a taper of my immune suppressing anti-rejection meds, but that’s been delayed. Oh well, I have to say, the fly boarding sesh was worth it 🙂 While going through airport security at JFK, the TSA chick pulled me out of line and said she needed to do a “hair pat down.” Wow, my fro could be used to conceal weaponry and other various and sundry contraband! Another on the long list of awesome benefits of a BMT 🙂

IMG_3233
Wanted to do this ever since Flipper
IMG_3270
Totally redeeming myself à la Lloyd and Harry

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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).

42 thoughts on “A Day in the Life (on the bone marrow transplant floor)

  1. I continue to be amazed at your good cheer and humor in dealing with all the challenges. You are a heroine to all of us watching you deal with these challenges. Much love to you, Todd, Rex and Mychaela.

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  2. sounds like u have been a little busy of late! how great you and todd were able to get away and swim with the fish. hope your eye sitch is resolved very soon.
    wonderful news about Rex. to be a match….wow.
    dana and i will be flying friday to san fran so she can run for LLS. she is in the process of having the “J” put on her LLS shirt for you know who! i will be sure and send a pic . once again, you are always in our thots and prayers.

    caron and fam XOXOXOXOXOOXOXOX

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  3. I love you more than words can say. I love that you tell the truth about your journey in blood disease land, no holds barred. Modern medicine, your beyond strong attitude and will to live, much deserved love coming your way – all got you back to us.
    XOXOXOXOXOXOXOXOXOXOXOXO Love, Mary

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    1. Mary Sue – Tons of love right back at you! You have been a rock, no a boulder, for me! I wouldn’t be here without you, and I don’t have any f-ing idea how I can possibly thank you for all you’ve done for me! Love, Love, Love! XO

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  4. Good morning

    Thank you for the wonderful update about yourself and Rex. I love reading your blog. Im hoping to be here when Rex comes to visit.

    Please give big hugs to all the family.

    Blessings

    Vivian Abernathy
    Community Outreach Specialist
    Be The Match Marrow Registry
    City of Hope
    Phone: 626-256-4673 ext.63812
    Cell: 626-283-9182
    vabernathy@coh.org

    [cid:image001.gif@01CFE7A3.2BBF3330]
    Be the One to Save a Life, Register Today
    join.marrow.org -Promocode: Hope4All

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  5. Joselyn–you are one funny lady. And as tough as nails. You have fought off all this pain and inconvenience with amazing courage and good humor. Don’t know how you do it–keep on writing and making us laugh or cry or cringe or whatever it is you do. Way to go Rex. See ya–I gotta pee–an old man’s prostrate or the power of suggestion.

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    1. Pete! You’re hilarious! I hope you made it in time 🙂 Thanks for being there for me throughout this battle! You and Cookie are amazing, true friends. Love to the entire Stevens family! XO

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  6. Wow, Jocelyn, I can’t wait to read your book! (I know it will be published!) Although I have read almost everything you have ever posted, I am still amazed by your strength, your AMAZING attitude, and of course your wicked sense of humor, every time I read something new. You’ve gotta know that you are everyone’s hero. Thank you again for sharing your life with us. We are so lucky.

    Love to you and Todd~

    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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  7. Hey Joeselyn. You know that you are my favorite BMT gal. Thanks for the update and a look into your time at COH. I suggest no trips to East Africa please. Sorrry that you have residual issues but your atitude is amazing as usual. Nurse Todd, you do good work, but it stems from your incredible patient. The report for REX is a miracle. It shows that SAE’s can be useful and are good for something. Great that he has stepped up. We got your back through your eye issues and, as always, whatever you need, the answer is yes. I now know a downside to Hydromorphone which I always liked even when I didnt have pain. i.e. it tuned you out to your christmas day Skype session with fam. Its gonna be Christmas again soon and you’d better stay up for it….and no more colds please! Love, Bart

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    1. Bart – I can’t thank you enough for your always witty and supportive messages! You have been an all-star to me, and I’m so lucky to have you as a friend! Yes, the SAE has done some good 🙂 Love to you, Bart XO

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  8. In the words of MLK Jr., The ultimate measure of a man is not where he stands in moments of comfort & convenience, but where he stands at times of challenge & controversy. Martin would have LOVED YOU, Jos! You are awesome & amazing, over & over & over again!!! Love to all the Miller’s & Pomeroy’s!

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  9. Hi neighbor…we have wondered how you are so it is good to read about your “exciting” life…whether medical or traveling, we love to be entertained by your wit, charm, and honesty!
    We are in Ohio enjoying the Fall and hope to see you when we return for the holidays.
    Much love and prayers to all the family!
    Lynn and Cary

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    1. Dear Lynn and Cary – Thanks for always being there for me! I adore you two and appreciate all you’ve done to help me get through. I hope you are both enjoying improved health in the new year! Love to you both! XO

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  10. Jos, you are a Wonder of the World! We are so sorry for the eye pain excursion. Not fair. You are the definition of Grace Under Fire!! Love love love is sent your way, K and D

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  11. Wow, Jos, I am so exhausted…just after reading your daily hospital routine! Which again reminds me of how AMAZING you are, of how much courage and stamina and persistence you’ve shown.
    YOU are a true inspiration and I am so glad you’ve decided to publish your blog~so all the world can be inspired!!

    Forgive me, I’d been under this illusion that much of your suffering was over! Clearly you are still dealing with so much…and as usual, somehow manage to find the HUMOR in all of this….the silly, the craziness of it all.
    YOU are a HERO of mine!

    Sending much love and huge hugs and tons of prayers from myself and OUR personal angel, Ry.
    May God bless you with comfort and healing.
    Linda

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  12. Sorry you have had to go through this! Thank you for sharing your heart with all of us which has inspired me and many!!

    xo Marilyn

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  13. Worst time slot in the 24 hour schedule…9:45am -gum/scab cleaning with cotton swab and biotene. Rex should be the perfect donor after his years of cleansing at SC!!! Jos thanks for the inspiration!!! Love you!! Scott

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  14. Unbelievable blog Joselyn and thank you for sharing as always. We are so proud of Rex and it was great to hear about your vacation! We will continue to pray for your eyes, too. Love you, Gretchen and Dick

    Sent from my iPhone

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  15. Joselyn: Words can’t do justice to what you have been going through and the battle you have been fighting. We all have our own medical ghosts, but they pale by comparison. Just know that you have the love and support of all that know you!!! XO

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    1. Bill – Who would have guessed back in ’79-’81 that my awesome photo teacher at Foothill High School would be so thoughtful as to send me well wishes 35 years later?! Thanks for all the support and the wonderful memories 🙂

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  16. Hair pat down? OMG! That’s a first. Your hourly detail of what you went through is heart-wrenching. I’m so, so glad that is over. Hoping your eyes get ship shape asap. Also, bravo for Rex. Proud Auntie.

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  17. Jos, Reading your blog over the past years has exposed me to your suffering and pain. Suffering and pain does not change, but our relationship to them can change. Your recognition of your suffering seems to have liberated you from it and created a lucidity that you expressed though humor. All of us looking in have seen your incredible inner strength that was continuously tested, but you consistently rose above the suffering, lightening it through your amazing calm, placid, reflective mind.

    And to Rex goes the same love and respect that we have for mom.

    Lynn

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  18. My dear, dear Joselyn:

    The most recent “Brawl” was signifient and beautifully written. I read it with great interest and hopefulness… You are still not entirely out of the woods, I can see….Yet, you still have the will of Athena…or Diana the Huntress… as you face each horrible reactions…..

    Thinking of Todd…. he is there by your side no matter what new medical problem transpires just there knowing you are alive and together… The most beautiful love story of all times which, I hope someday, you will write… From the beginning of your acquaintance, your story is so true and your love carries you along no matter what happens.

    Rex is to be admired…. Now he is going to have to go through with the life-saving procedures…. I am sure he didn’t think in the world he would have a match !!! He is young and like your brother will look back on the time as the highlights of their lives. Wish him my best, please… that darling boy…. Will he be finished with the sememster in time for the procedure to be done? I hope so because he will be finished…. as his story of “college” comes to a glorious end.

    My love Sweetheart to you, to our darling Toady and family….

    Auntie CHar

    Frau Huperschmielt for give errors, esv but I have a ew laptop kids gave me….. Trying to get use to it.

    Sent from Windows Mail

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    1. Thanks, Auntie Char, for your amazing support, prayers and well wishes. Rex came through with flying colors 🙂 I agree ~ he will look back on this time with great pride and gratefulness. Love to the Mayfield and Skiles families!

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  19. So interesting, fascinating, heart-wrenching, clever, brave, inspiring etc, etc. I could go on and on, but I have to watch Rex on the telly now xxxx

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