One Year, One Transplant, One For Sale Sign, One Arm

Today marks Day 172 post bone marrow transplant!  One year ago, I went to see my internist, Dr. C., for  “stiff muscles,” and she referred me to a rheumatologist, an infectious disease specialist and a neurologist within a week.  I had no idea what the next year would entail:  263 blood tests, 4 bone marrow biopsies, 54 platelet transfusions, 47 blood transfusions, a bone marrow transplant from my brother, lots of various biopsies and infusions and thousands of pills!  A year ago, Todd and I thought I had tendonitis 🙂

IMG_0862
Lovely baseball sized hematomaIMG_1295Attractive concave biopsy scar

Speaking of biopsies, one of the most exciting was my open muscle biopsy of my left thigh.  For the first several months following my surgery, ILLFRMT – It Looked Like Frankenstein Ravaged My Thigh.  A hematoma grew to the size of a baseball, and my docs kept a careful watch on it.  It has now come full circle, and is actually concave at this point.

The Graft vs. Host Disease that I have developed is fairly common following a bone marrow transplant.  We caught it early, so I should be able to off it with no major lasting problems.  Dr. Fantastic has me taking some new meds (Prednisone, Dexamethasone, Rapamune and a doubling of my Tacrolimus), which seem to be working their magic in keeping the GvH under control.  My hideous mouth sores have gone away, leaving only a light colored rash on my gums, which I prefer.  I have several inflamed taste buds (feel like bonfires) on my tongue and my lips are still blistered.  MTAPFUFTC – My Teeth Are Pretty F-ed Up From The Chemo (and subsequent meds), and it looks as though I have emerged from a coal mine after a year with no Global Grins toothbrush in sight.  Even though it is way painful to eat, I am managing to cram everything in sight into my hurtin’ mouth.  My appetite is raging.   Ironic that I cannot gain weight (I’m down 12 pounds since my hospital stay) with all this food.  It’s actually a huge advantage and time saver when it comes to getting dressed.  Imagine not having to mess with zippers, snaps or buttons on your pants!  It’s all about just pulling them up and being on your way.   Some may confuse me for an Emerald Bay housewife gang banger, with my waistband half way down my ass, but that’s cool.  With this special look, I am also now available for plumbing projects:  www.buttcrackplumb.net.   My purse contains a pipe wrench at all times, so I am able to get right to work under any sink.  I am sporting a red rash all over my face now, too, which causes some stares, but what ev.  Dr. F is confident that my graft of Leason’s marrow is very strong, and a full rejection is highly unlikely.  So, for now, GVHPMBOTPPT – Graft Vs. Host Has Put Me Back On The Prednisone Party Train.  I am hopeful that we can start a taper of this loathed med before all the side effects that blow kick in.

IMG_1278
Just Listed!

I greatly appreciate all the compliments on my balancing skills in keeping a vomit-filled styro container from spilling on my new interior while making left turns, avoiding medians and continuing to barf.  I have to say, I’m impressing myself as I recount this amazing feat.  As you might remember, I doused my crotch with much of the yellow broth, then pulled over so Todd could pour out the remains of the tray in the front yard of a very unlucky resident.  After driving by that house again on our next visit to City of Hope, we noticed a new feature to the front yard.  Coincidence?  Perhaps.  Perhaps not.  I may be responsible for a massive crash in the Duarte housing market.

Athletic dedications updates:

vball
National Silver Medalists

Todd’s volleyball team, Western States Laguna, dedicated their play at the National Championships this year to me.  I know, I know ~ warm and fuzzy.  World renowned libero, Harold Noriega, arranged to have “Jos” printed on the jersey sleeves.  After competing against a field of 25 teams from all over the U.S., Canada and Venezuela, they came home with the silver medal!  I am so proud and thankful of their support 🙂

IMG_1307
San Diego Rock & Roll Half Marathoners

Rex, Mychaela and Mych’s good friend, Dana Kent, ran the San Diego Rock & Roll Half Marathon also in my honor.  Dana spearheaded the effort, running to honor her father that she lost to leukemia, and raised a good chunk of cash for the Leukemia and Lymphoma Society.  Thanks to these three and to all of you who supported Dana in her fundraising!

IMG_2003
Global Grins Volunteers

I have been able to get out a little more socially as of late, and I’m loving the opportunities to be out in the normal world again.  I had a few lunches at actual restaurants with friends, which have been so wonderful!  My mom and I ventured to Fashion Island for a heavenly lunch and my first trip into a few stores in about a year.  Todd and I have gone to a couple of matinees recently, making sure we sit far away from our fellow movie-goers.  It’s been great just to be back in a theater, even though our last flick totally sucked!  Hangover 3 was SO not funny ~ I loved the first and gave the second a thumbs up, so I was kinda bummed when I was forced to throw rotten tomatoes and curse at the screen as soon as the credits rolled after the third.  I attended a beautiful wedding shower this past weekend, and even though I grossed out everyone there with my facial sitch, I had a great time and was warmly welcomed.  No rotten tomatoes and no cursing.  It was a truly lovely event.  Todd and I also recently hosted a Global Grins “work day,” where some board members and supporters spent the afternoon preparing 150,000 toothbrushes for shipment to those in need all over the world.  Thanks to everyone who participated!  We greatly appreciated the enthusiastic support from every volunteer 🙂  Check out www.globalgrins.org, the non-profit Todd and I started a few years ago.

IMG_1311
+ One New Dress / – One Arm

I have been feeling the creative pull of my art room, and decided to create a dress for myself, which was a very fun, stimulating project.  Here is a snap of the dress.  My lip blisters messed with my smile.  You may notice another of the side effects of Graft vs. Host, which I failed to mention above.  My right arm fell off 🙂  It’s a very rare, inconvenient complication, but leave it to me to defy the odds once again.

Posted by

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).

37 thoughts on “One Year, One Transplant, One For Sale Sign, One Arm

  1. You funny as hell Dr Jones. Keep up the writing and keep up the attitude and kick this evil out of you life! Miss you.

    Like

  2. You are so dang cute! You make me laugh and I hope that brings a smile to you! It was so wonderful seeing you this weekend! You are on your way with lots and lots of love and support!

    Like

  3. You are a funny beatiful woman and we are so glad you are mostly well! Love you and can’t wait for you to be over all this ! The McDowells PS Keep writing!

    Like

  4. Oh man! You are one funny lady! Now that things are getting better I don’t feel so guilty laughing at all your calamities. Well a little bit guilty. I guess reading your blog is a guilty pleasure. Way to go Todd–Silver is good. Jos- please do not stop writing. But please do keep getting better. Too bad about your arm. Maybe it will grow back.

    Like

  5. Jos, you’re nothing short of AMAZING! Again with the tears and laughter…you had me going again.
    LOVE the DRESS! Love your HUMOR and am once again, amazed at your courage and strength!
    So happy to hear you’re making progress and that the doc thinks this Graft vs Host is in for a short stay!
    May the power continue to be with you!
    Blessings, Jos…
    Linda and our angel, Ry xoxox

    Like

  6. One handed clap for you! That’s raising your hands and waving them back and forth in a Queen Eliz. wave…like the deaf clap. Since you’re so skinny there is no fear of Aunt Bea arms as you wave. See, the silver lining. I’m all about the 1/2 full part of the wine glass! cheers!! Tabitha Unterberger twunterberger@gmail.com

    Like

  7. 263 blood tests, 4 bone marrow biopsies, 54 platelet transfusions, 47 blood transfusions, a bone marrow transplant from my brother, lots of various biopsies and infusions and thousands of pills AND A PARTRIDGE IN A PEAR TREE!. What a year it has been Jos and, yes, your recovery makes me feel as though Christmas is early this year as 172 days of Christmas and counting is in your future. You are ONE big gift from God and so deserving of your progress. One Year, One Transplant, One For Sale Sign, One Arm and ONE big fat hug from me! BTW, shhhh. I know that your arm was photoshopped. I wont tell.

    Like

  8. I am still laughing about the right arm. You are cracking me up! Oh Jos, I love your ability to make fun of all that is going on. I love it. XOXOXOXOXOXOXO

    Like

  9. Your humor, wit and creativity have always been off the chart…Now i can add in your strength, courage and attitude to your incredible attributes. You have been through so much and have chosen to handle it with such grace. I love you so
    Jennifer , Chanel, Trent, Weston and Savannah.xoxoxoxoxox

    Like

  10. Our prayers and love for you jos and your family are sent Dailey…. Your strenght, courage and humor are amazing to feel in your blog… Thank you for keeping us in touch with you during this last year of wtfih… We Love you … Karen, McCall and Garrett

    Like

  11. Love the cool dress and the cool girl inside it!
    Ànd…your fancy blue and yellow toenails are inspiring too…:)
    Hugs and prayers with a lot of happy laughter, Ann for all the Cooper 5.

    Like

  12. Continual Amazement!! That’s you Jos!! (Face-still beautiful, sense of humor-top notch, dress-just adorable, writing-hilariously poignant)……keep healing, keep writing, keep designing, keep fighting, keep smiling!!! XO Kristi and Doug

    Like

  13. Jos
    You are my idol . You are amazing, funny and have the best sence of humor ever! Keep writing as you are truly an inspiration!!! Lots of love and well wishes,
    Tory Veje MacDonald
    xoxoxo

    Like

  14. You are so amazing! I love the updates but am sick you are still dealing with so much! I am glad to hear the meds seem to be holding off the GvH. You crack me up that you had the energy to make that dress-Awesome!!! Thank you so much for sharing and know we are all praying daily for you and hope to see you on board in January!!!!

    Like

    1. You have left me speechless, which is rare!!! You never cease to amaze me, Jos!!!

      Uncle Jon & I so love & admire you!!! How you manage to make blisters, rashes, hematoma’s & bile so beautiful & humerous is quite artful.

      Sending love your way…pls share w/ your handsome nurse!!! Rex & Myck sure warm our hearts… XO

      Like

  15. Jos, your sense of humor is amazing and your ability to make light of what has been a most horrible situation is more than courageous. Those numbers are ridiculous. I have needle phobia, so if my numbers are right I would have had extreme needle trauma approximately 368 times from all of the jabbing you have experienced and that does not include the simple shots, pic line and so on that you had to deal with. No way I could have done it. We are all so excited that you continue to recover and are getting out and doing some of the things that you enjoy, and that you are back in the design mode. I see you put some of that “Todd orange” in your latest creation. I hope to see you in July. Lynn

    Like

  16. Yeah that dexamethasone will give you the munchies for sure… good luck with the weight gain! And, if anyone tells you brightly, “You can have a few of *my* pounds,” rest assured that no jury of your survivor peers would convict you for slapping that person in the face.

    Like

  17. Hi Joselyn
    So good to read that you continue to make us laugh despite GvH! Never a day passes that I don’t lift you up in prayer…especially when we drive by your wonderful home and happily see lights on. Hang in there because God definitely ain’t done with you yet. Kisses!

    Like

  18. Jos, You really continue to amaze us all with your courage, grace and hilarious sense of humor throughout this challenge. God provides strength beyond our comprehension. I hope that you realize what an inspiration you are for so many. Can’t wait till you are back on the beach at our summer barbeques and various athletic activities we are so accustomed to seeing. You are always in our thoughts and prayers! 😉

    Like

  19. what a fun day i had with jos on tuesday. she took me for a ride in her new race car, had lunch at our favorite R&D, and bought some cool hats at Bloomies! it seemed like old times doing this fun stuff together again. a perfect day with my all time perfect hero. xxxooo mom

    Like

  20. Jos, Kara, and Sara always include you in their nightly prayers. Your courage and ability to think on the bright side is a gift. You are so beautiful to us inside and out and shine like the brightest star. Continue to use humor as your coping mechinism. It’s working. We love you so very much! I’m so proud to see the kids running marathons! YAY! Stay strong in who you are, an amazing woman! Love, Carolyn Soylular

    Like

  21. You are an inspiration and one of the reasons I join in the fight to erase cancer with Kure it. My mom passed 5 years ago today. Thank You for sharing because although my mom loved doctors, she ignored the warning signs and did not get tested. You sharing with us makes us all aware to get tested and healed. I want you on my team! I feel as if I know you and want your autograph! Blessings TT

    Like

  22. Hey Jos! Thats a very cool dress, looks like your travels rubbed off on your inspiration for it 🙂 So glad to hear your doing better. Your writing is unmatched keep it up it’s the only thing I consistently read : P the broz and I are all back in PA for now, sending you East Coast love! Wwwwam!!! 🙂

    Like

  23. Jos,

    It was so great to see you at the shower! Your dress was so gorgeous and you looked stunning in it. We all marveled at your incredible talent and wanted the dress and asked where we can buy one? We will pray for your arm and that you get off the prednisone soon.

    I also ran into Courtney’s mom, Kathy and updated her on your journey. She is praying, too. Congrats to Todd and know that you are constantly in our prayers! Xoxo

    Gretchen and Dick

    Sent from my iPhone

    Like

  24. Hi Jos, Hope you got my message. Talked to Nolan and he is very happy to be included in Monday night’s dinner – can I send cookies or anything?

    I hope my dumb cards aren’t a nuisance as I know that when you are trying to get through something you don’t necessarily want to be reminded of it. Please don’t hesitate to tell me to cease and desist! I have boundary issues when it comes to people I know with life threatening illnesses. Hence, they are all still alive to get me off their f*****g backs and out of their mailboxes.

    Please let me know if I can help Monday. xoxo er

    Like

  25. Hi Jos,

    You are so funny…I love the update…house, dress, everything…always happy to see your wonderful sense of humor.

    Lots of love, Barbara

    Like

  26. Hello Jos,
    Absolutely love the dress and shoes. The polish colors on the toes are fab…Hope to see you sometime soon ..we sure miss u and all those LBHS volleyball matches!! Keep that beautiful smile glowing..
    Hugs and love , Patty D..

    Like

  27. Joselyn:

    After reading through your Joselyn’s Brawl newsletter, I am overwhelmed with what you have and are putting up with in such a brave manner.

    Today, I am befuddled and must answer my many e mails awaiting attention as I have been busy doing flowers for a wedding that turned out so beautifully….. I am proud that I could “come out of retirement” and be able to stand the pressure as my stamina is great but now I can not stand too much. It will take awhile but Auntie Char is still able to function even with my left wrist broken, (I am left handed), I took off the brace and went for it.

    I was not paid because these friends helped me when Uncle Bill died with money and organizing everything for the funeral, etc. So my labor was my wedding gift and the parents paid for flowers, etc. It was truly a beautiful outcome… small and served oysters on half shell along with shrimp and a huge lobster each for 50 guests. The groom is in the wine business and created special wines, etc.

    The couple are off to the South of France in a week…. Serena, the bride is a friend of Millicents for last 35 years.

    What I get a kick out of is that your turquoise dress with polka dots is adorable with your hat. You look like the 60’s darling!!! Dress was wonderful creation..

    Oh,, Jos my sweet niece I pray for you and Toady and your family. Brian and Milly are coming down this summer.

    my love, my admiration and my prayers,

    Auntie Char

    Date: Wed, 5 Jun 2013 04:41:34 +0000 To: charlotte_mayfield@hotmail.com

    Like

  28. My best friends 13 year old son is having a bone marrow transplant july 19th. If you have any words of wisdom we would greatly appreciate it. He has leukemia.
    I got great hope and heart for the future reading your posts. Best wishes and hope you get stronger and stronger until you can put all this behind you!

    Like

  29. Jos, what an amazing attitude you have. so grateful to have ever known
    anyone with your spirit. i think you and stacy have the same outlook on
    life. never give up.

    Like

  30. Hi Jos,

    I stumbled upon your blog while researching my husband’s inflamed taste buds. He’s about 7 months post-transplant and I’m trying to figure out what’s going on. Did you docs get to the bottom of what caused it? Oral GVH? Did you find anything helped it? If you wouldn’t mind emailing me, that’d be great!

    Thank you, and thanks for sharing your story. There’s so much power in breaking down the walls of silence.

    Like

Comment (pretty please!)

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s