Transplant

I apologize for taking an exorbitant amount of time to get another post up, but I have been feeling rather sh*tty as of late. I am sitting here in a slightly morphine induced haze, trying to update you on the previous 5 weeks of my life. Here goes nothing:  On December 3rd, a couple of carolers started singing outside our house just after sunset.  I walked outside to see about 200 of my friends and family singing Christmas carols to me, Todd, my mom and dad, and Santa Claus, who all happened to be there hanging out with me :).  It made me feel beyond honored and extremely loved to see everyone there and feel the Christmas spirit.  After about 15 minutes of some of my favorite Christmas jingles, Todd said a few words to thank everyone for their support and then he introduced Santa as my brother Leason 4, my bone marrow donor.  The crowd erupted with cheering and it truly lifted my spirits like never before!

I found out later that many of the carolers were also writing me well wishes that night on these awesome little cards and all of them are hung up in my hospital room right now in the form of a garland.   It is quite the sight and I love looking at it each day.  Thank you to everyone who put the caroling together, especially Micki Rach, amazing soloist Lynn Nolan, Gretchen Miller, Mary McDonald and Jennifer Martin.  Thanks to all my Pi Phi sisters for helping put the notes together.

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The moment doctors or nurses walk into my room, they are amazed at the way it is decorated.  It is far removed from the sterile hospital environment I first walked into.  It includes a nerf dart board (areas of target include “chemo,” “bloody mouth pain,” and “aplastic anemia” as the bullseye).  This game has become so popular among nurses and doctors that they usually take a few shots during their room visit to better their scores.  I also have three Christmas trees, a bulletin board full of pictures, the garland of hundreds of notes from friends and family, two new games my parents have come up with, and a creative display for all of my new head wear.  I’m feeling quite at home here, and it definitely helps to have my family here supporting me each day as well.  Todd has brought me a very creative and encouraging card each and every day!

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On December 14th, as the sun was rising behind the City of Hope, my brother, Leason, had a quart of his bone marrow removed from his hips.  To do this, Dr. P  drilled a total of 6 holes in the back of his hips to retrieve the bone marrow.  As the sun set later that same day, the precious life-saving marrow was transplanted into my body.  Leason was able to recover enough from his surgery to come into my room and be there with me during the transplant.  I felt so lucky that my brother was a perfect donor match. I was thinking about that day for so long leading up to it, and to watch his bright red bone marrow move through the clear IV tubing and enter my vein in my arm with him and my family there watching was one of the greatest experiences of my life.  I’m happy he is almost fully recovered from his surgery.  I will always be eternally grateful for my little bro.

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You know how when you close your eyes and you can still see the pattern that the light has made, through your eyelids?  Shortly after my transplant, I started falling asleep for short little bouts and saw what looked like millions of red dots flowing across my screen of vision…  Jimi Hendrix, Transplant Haze.

Now onto the serious stuff….I’m bald.  I have a strong affinity for the morphine button next to my bed.  My mouth, throat, esophagus and stomach have been hacked up from my chemo, causing me an intense amount of pain.  It basically looks like someone blasted a blowtorch down my throat, leaving me with many oozing sores.  I am constantly coughing up a bloody mucous from these sores as well. Hence the acronym: CIDNFPAIIB = chemo is definitely not for pussies and is indescribably BRUTAL.

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Other than that, there have been minimal complications. Many of the doctors and nurses around here refer to my transplant day, December 14th, as Day 0 and have different benchmarks I should be hitting from there.  Today is Day 20, and my team told me that my transplant should ingraft to my bone marrow around Day 21, or January 4th.  I got a nice early start!  The next big hurdle I’ll be aiming to reach is Day 100, or March 17.  I’ll be pretty much in the clear from any “graft vs. host,” or rejection complications.  Celebratory green beers and gold chocolate coins are all “on Todd” this St. Paddy’s Day.

My daily routine mostly consists of hanging out with my family, watching movies and all of the recent college bowl games.  My parents have two trivia games that I get to play each day as well.  One of them is titled “A Little Less Hair and Proud of It” and I am given clues to guess show-biz people (and cartoon characters) lacking in the hair department.  Speaking of which, Todd shaved his head as well as his sign of solidarity and love.  The other game involves a charm bracelet my parents have started for me.  I get a new charm each day and I’m given clues to guess what it is before they add it to the bracelet. Each charm has something to do with my life.  Todd brought up every Christmas card as well as all the wonderful letters I’ve received, which I love.

I have a physical therapist visit me each day to help keep me in somewhat decent shape and help prevent my muscles from any major atrophying.  I also have a mouth care regimen where a specialist comes into my room every four hours to help prevent any infections from starting in my chemo sores.  One of the medications they give me for this resembles a peace pipe, at which point I invite all into my “hookah lounge”.  Because of the current state of my mouth and throat, I’m not able to eat.  I get all of my calories from a giant bag of yellow liquid that resembles urine through my PICC line.  As you can probably recall from a previous blog, I couldn’t stand the low bacteria diet I was on during my previous 43 day stay at the hospital, so I’m a big fan of my new diet.

In addition to my mouth care medications and new bag o’ calories, I have an average of about 6 other meds going into my PICC line each day.  These include different antibiotics, liver meds, blood pressure meds, and anti-fungal meds.  The longest break I get to myself is about 2 hours during the night, as I have nurses continuously coming in to check my vitals, give me mouth care, do blood draws, and renew or change speeds on my IV meds.

I can’t believe I have already been here for 3 and one half weeks.  I am so happy to have my family here and to hear from friends and my extended family each day.  I love the blog and facebook posts too.  My nurses and doctors have been truly amazing.  I hope the rest of my stay goes just as smoothly, and I’m so stoked to start seeing some improvement from the transplant.  My white blood cell count is currently 1.6 (up from a recent 0.0 – normal is between 4.0 -12.0)!!!  I hope you all had a Merry Christmas, and here’s to a great 2013.  I’m not exactly sure when I’ll be going home, but it looks like around 2 weeks from now.

Before I left for City of Hope I had Dora cut my ponytail off and give me a new pixie cut.  I sent my ponytail to Locks for Love 🙂

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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).

87 thoughts on “Transplant

  1. Hi Jos,
    I know you through my brother, Scott. I have been reading your blog… and have been hesitant to write… I have been thinking of you often. I am so happy to read of your incredible progress. I have more to say, but am shy of blogging, as this is my first time. Love is all.
    Loriann

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  2. Oh Jos, it’s so good to hear from you. What an ordeal you have been through these past 3 1/2 weeks! And then you had to suffer through the pitiful USC bowl game… enough to make any fan cry. I pray that you iimprove daily and that we all can celebrate with you on St. Paddy’s Day. Love to you! Tara B.

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  3. Such great news that things are looking up! Take it from me, bald isn’t that bad and your hair will come back quickly… I’m now at about the Ellen DeGeneres stage. In the meantime I have a nifty little wig you can borrow if you like. Keep up the good work, I know you’ll kick this thing to the curb.

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  4. …Happy New Year Jos. I have been out of the country and just got back an hour ago…did not check email till now and it is SO good to read your message. I will keep your “white cells” in my prayers…much love to you…you are so brave…Silvia

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  5. Hi Jos! I’m so pleased to see this new post as I have been checking, periodically, to get a new update. So thrilled that the transplant went well and that the outcomes are on a good start! Still can’t believe all you have been through with this and are still going through… The care, love and support you have around you is Amazing! What tremendous blessings and sunshine in the midst of trials and storms. You are incredible and an inspiration facing this head on with fortitude strength and humor. Looking forward to more good reports! Thoughts and prayers continuing with and for you! Love, Jana

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  6. So happy to hear that Leason pulled through without issues and that you are well on your way! Your numbers are very encouraging! I am so sorry that you are still in so much pain, but each day brings you closer to whole. We are thinking of you all the time and sending prayers and healing white light. Is it too early to order an orange wig to go with your green beer? Maybe one for Todd too?
    Love you!

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  7. Joselyn, Each time I read your blog I am so overwhelmed by your incredible strength and attitude. You are so awesome! You encourage me (and I am sure so many others) to appreciate each and every day. Fight on…you will conquer this disease!! You continue to be in my thoughts and prayers.

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  8. Your attitude is amazing and is humbling for us who sit and read and are healthy. Your fortitude, humor and courage is an example to everyone in your realm. Which is many!!! May 2013 bring you strength, health and a break from all the “health hell” you have been through. I pray your counts go up, your spirit is encouraged by Gods Grace and you stay feisty! Love Tamara

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  9. I just spent the last hour reading your blog and comments. Wow!!! Even though Rhea and many of my patients have told me of your situation, reading about it from you is incredible. Keep fighting, young lady… My prayers and best wishes are with you, Todd, and your children. Hope to see you back in my office soon, That March 17 date sounds pretty good, green beer and all.

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  10. Hi Jocelyn, congratulations on your results so far. 1.6 and climbing and no graft-host issues. outstanding. Sounds like the Bro Dan Lucas miracle story unfolding again from after his perfect match transplant from his sister I spoke of before. Dan had Leukemia vs Shulman’s but the treatment is the same. Next step is to go home and then the benchmark day 100. You are on a roll which means we are all on a roll. 2013 will be the year of miracles and you, dear Jocelyn are among them. With love. Bart

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  11. Wow, Jos. You are absolutely amazing and inspirational as is Leason! We too have been praying powerfully for you and your family and so happy to hear that your body is responding positively to the marrow. Todd has been keeping us up to date when he’s had time and has become a true role model of love & leadership. Take peace in the fact that every minute of every day, you are being restored. Every breath is one of cleansing. With all of love and prayers, Don & Leigh.

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  12. Jos! We are excited to hear about your 1.6 and climbing WBC. We loved your HOPEful Christmas card, too! Heard Earth, Wind and Fire’s “Twenty-first of September” in the market and I all I could think of was you and all the great trips we had with our girls! Be well, my friend!
    Love from Mary, Chris and Julie

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  13. Wonderful to hear that everything seems to be on track. This year has got to be better than last.

    Stay strong and positive to keep that healing kharma going.

    Todd is bald? This I gotta see.

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  14. Dear Joselyn and Todd, We know exactly where you are in the journey. This too shall pass. It takes one day at a time, but there is light at the end of the tunnel. The carolers for Christmas was very touching.. It’s so great to have so many loving friends. Your brother is a miracle worker. Our prayers are with you and that God will open many doors for you. May 2013 be a progressively revealing year for all your family. Prayerfully, Bob and Emilie Barnes

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  15. Dear Joselyn, We are continually praying and thinking about you, Todd, Mychaela, and Rex! It is wonderful to read that things are moving forward in the right direction. Melinda enjoyed her talk with you and Todd and I hope to get you both together soon! Thank you for being so open about this journey it inspires all of us to live beyond ourselves! We love you, Marilyn
    P.S. John and Rex are sure having fun.

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  16. Very glad to read your latest post. We were thinking of you quite often at Christmas time and kept you in our prayers. Kudos to your fam for getting the Miller card out this year! Love you and miss you, Sweet Joselyn… XO

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  17. Hi Joselyn!

    You were in my dream last night, and I’ve been thinking about you all morning and hoping that your recovery is swift and strong! I’m so glad to read your post and hear about the improvements in your white blood cell count. Your illness and treatment sounds like a trip to hell and back, which is why it’s so impressive that you’re handling it with such aplomb!

    Hang in there and keep fighting! We’re all pulling for you.

    Love,

    Eliza

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  18. Joselyn,

    Thank you for your blog….You are such an inspiration. I am so sorry you are having to go through this but so grateful that you are improving each day. I can relate about the mouth sores – I got them too from chemo and they suck. Hang in there and know I am thinking if you every day 🙂

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  19. Hi Joselyn:

    We are so glad you are doing better, and that your cell count is up. What great news. I’m sorry I haven’t emailed lately. I was off for a couple of weeks, and then we got sick. Things have been crazy busy at work as well. Anyway, what a sweet thing of Todd to do to buzz his head. He’s such a neat Hubby. You two are a great couple. We hope the sores in your stomach and throat/mouth are getting better. They just sound awful. We are awaiting more good news from your Mom. You take care, and we love you. Happy New Year. Let’s hope 2013 is a great year for The Miller’s!

    Love, Aunt Went and Uncle John

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  20. Dear Joselyn,

    You are incredibly strong and positive, with a truly stellar support crew. Here’s to continued healing and restoration in 2013!

    Thinking of you,
    Gianna

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  21. I’m so happy to read your last blog. Your just an amazing person Jos. Give a big hug from me to all the nurses, docs, aides, etc, etc who are looking after you (when you can). They must be doing a good job!
    All my love,
    Ro

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  22. Joselyn-

    I’ve been following your blog but have been away and just saw the last update from a week ago.

    I thought of you and Todd earlier this week when I was at the send-off for the Spring 2013 SAS voyage. As is often the case, I was talking to parents about the married couples that have met on an SAS voyage.

    I hope today your are feeling better than last week and that each day brings you improved health and that it won’t be too long until you are up and about.

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  23. JOSELYN,
    YOU ARE A STUD, i AM SO IMPRESSED BY YOUR UNBELIEVABLE ATTITUDE. i AM SO GLAD YOUR BONE MARROW TRANSPLANT IS WORKING. KEEP FIGHTING
    LARRY

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  24. This is great news Jos!! Your definitely on the upswing! I couldn’t be happier than to hear of your progress. You are beating this thing!

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  25. Jos, YOU are pure love, surrounded by love, and you inspire us all. We are all so happy to see all the good things coming your way. You, Todd, your family, and your dear sweet brother are my hero’s forever. Keep up the good work! Your spirit, your strength, and your heart shine, and I can’t wait to see that rainbow coming your way on Saint Patty’s Day, Pot-of-Gold and all, for you… Love, Rose and family

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  26. Jos, your incredible attitude and bravery is an inspiration. I’m sorry I have not written sooner, but I just found out. Either word travels a little slow to Miami or I need to do a better job of staying in touch with our shipmates. I have read your entire blog, and Val and Bass also filled me in. I don’t know your brother, but what a stud. Todd, who I love, is the gold standard. Jos, you are a superstar! Keep kickin its ass….you are on the road to recovery! Love, Steve

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  27. Joselyn- keep going girl. I’m so incredibly inspired and have so much love, concern and hope for you. I’ve been reading and praying on the sidelines – you are so awesome, beautiful – no really – regardless of the procedures – the chemo – your inner beauty, your character and wit -makes us all so damn humble, so lucky to know such a beautiful soul. Get healthy – I’m expecting a great family picture at Disneyland for your 50th – w. / the penguin flat on his damn face! XOXO from Colorado – Kirsten and Jeff Keen

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