Repulsive Rash, Loathsome Lips and Heinous Hair

My Graft vs. Host symptoms were getting worse, so Todd urged me to email Dr. F to alert him.  I was not scheduled to see him for another 10 days, but he emailed back immediately and told me to come in the next day and he would squeeze me in.  So, back up to COH we went.  I had AFBT – Another F-ing Blood Test in the main lab, then headed over to see Dr. F.  During our last visit, we presented him with his very own F-bomb (see post “100 Days ~ Look Mom, No Mask”).  He was thrilled, because we now freely toss F-bombs around the exam room, which makes me feel right at home 🙂  He brought in Dr. J (not the hoops player), but a dermatologist with lots of experience with Graft vs. Host.  She was great (doctor #18 for me), and was confident that I would get through this setback.  My blood counts are now holding steady in normal ranges and Dr. F reassured me that my graft of Leason’s marrow is very strong!  They both checked me out and determined that I needed more meds to get this GvH thing under control.

Red Rover, Red Rover ~ please let this face rash be over!
Red Rover, Red Rover ~ please let this face rash be over!
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A blistered lip is not hip.

My facial rash has become more hideous and red and my lips are more painful, due to an increase in lesions on the inner ridge.  Smiling, speaking and eating are quite painful these days.  I was given a prescription cream for my face and a prescription ointment for my lips.  I now have a sh*t ton of meds I take per day, as compared to just a sh*t load I was previously taking.  Big difference.  It seems I am popping pills, swishing solutions or applying creams/ointments all day long.  I am so fortunate that my symptoms are very minimal compared with some of my fellow COH patients and online AA and GvH group members.  Some of them have been hit really hard with GvH, like major infections and blindness.  Some need a second transplant.  I continue to be blessed!

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My most precious charming collection of good luck.

I have been wearing a bunch of good luck charms around my neck ever since I entered the hospital for my second stay (transplant).  From my parents:  a boy/girl charm, representing Leason and myself; a wishbone; an evil eye, to ward off bad luck; and a guardian angel.  From Mychaela:  a “fearless” bar and a lucky horseshoe.  After my transplant, Mary added a “BMT Survivor/One Tough Chick” circle of life.  I believe they have helped bring me safely through this experience, and I don’t know if I’ll ever take them off!

I continue to make trips out into the real world, including another matinee with Todd – The Internship.  I give it a B-.  I give our lunch at R & D Café an A 🙂  I’ve been out to lunch with several friends as well, and I’m loving getting out with them!  Yesterday, we took Rex to LAX for his flight to London, where he will join the Semester at Sea Summer ’13 voyage.  Todd was very concerned that I was mingling with the great unwashed in the Bradley International Terminal, so we basically ran out of there after a tearful goodbye at the security line.  Two nights ago, we had a casual Bon Voyage with Rex at Sushi Laguna, and I had my first raw fish in a year.  I ripped open a few tender spots on my lips to open up wide enough for the Maui Roll, but it was totally worth it!  Yum yum in my tum!!!

OK, so THSIOOC – The Hair Situation Is Out Of Control. We’re talking not even close to the Bad Ass scoreboard.  What ever this is on top of my head doesn’t even register a 0 on the scoreboard.  I went from straight, fine “brown” locks to chemo bald to a runaway train bound for the disastrous fro look of a 76+ year old lady who has basically thrown in the hairdo towel and said WTF – I don’t give a sh*t anymore. I purposely wrote 76, because my mom is 75 and definitely NOT in this category – she’s a hottie 🙂  I don’t actually know any ladies who fit this description (and NONE of my readers fall into this category), but I’ve seen some around, and I want no part of it.  So, I’ve made an emergency appointment with my hair expert, who I’ve known and trusted for over 25 years, to save the day and slam on the fro freight train brakes.  I’m getting a little bored with my hat collection.  I’ll keep you posted on the magic he works on my head.

Today is Father’s Day, and the three most important dads in my life could not be more precious to me.  My dad, Leason Pomeroy III has taught me that I can laugh in any situation.  Side by side, we have been battling various health issues, and we’ve been kicking a sh*t ton of major ass!  My husband, Todd is the most amazing father my kids could ever wish for, and he has been the most dedicated care taker anyone could ever ask for, going way beyond what any other care taker has ever done!  Appointments, prescriptions, correspondence, driving, keeping the stress level very low, cooking, shopping and emotional support are out of this world!  My brother, Leason Pomeroy IV literally saved my life by donating his bone marrow.  He is a fantastic father to Andie and Leason V.  He and Kesha are raising two incredibly smart, well adjusted, talented kids.  I wish them and all the great dads out there a very happy Father’s Day!

F-bombs heard ’round the world :

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The countries that have any color are those that have checked out this silly little blog.

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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).

17 thoughts on “Repulsive Rash, Loathsome Lips and Heinous Hair

  1. Jos — you are simply AMAZING!!! Although I’m just now commenting, I’ve been reading, laughing & crying along from just about the start. Keep fighting, keep writing & find yourself a publisher & get this thing in print! Erma Bombeck has NOTHING on you my friend!! 😀

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  2. Amazing jos!! Keep on keepin on! Can’t wait to hear how your hair don’t will turn into a hair do!!!! So jealous jef and Vacco got to see you!!! Love, hugs, and prayers!! Xx french

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  3. Ugh…so sorry about the rash and blistered lips…and all the med’s…and the tearful bye at the airport with Rex! Your heart for your kids, your friends and family just shines in the midst of this yucky yuck! Love your charm bracelet and All it represents! Keep on fighting Jos! Special shout out to Todd and hoping y’all had a good Father’s Day together on this beautiful Laguna Sunday! Love from Cooper 5

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  4. OK, I have been reading and following this blog from day one and I have never made any comments. It has been completely overwhelming to me from the beginning. My God, how do these things happen to good people? I cannot express enough how much I admire you and your whole family for all the strength and love you have shown each other. To me you are the example of what we would all strive to be. So many have said all of this and more so eloquently,I have hesitated to add my inadequate 2 cents. But in honor of father’s day I decided to chime in. I will light my usual candle for you all — that is what I have been doing. Love Kathy

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  5. My biggest take away from this post is “What’s with Greenland?”. How is it that no Greenlanders have read your blog. Are they that behind in internet connectivity? When you start up with your travels again (and you will) I suggest Greenland be on the agenda so you can investigate first hand. Again, you continue to bedazzle us all with your amazing outlook and humor. So sorry to hear about the annoying side effects. But glad to hear the doc is confident they will pass. We have total confidence that whatever you do with your hair it will be the new trend. Rash, blisters, afro – you will still always be truly beautiful. A very Happy Father’s Day to all those dads who helped to influence the wonderful person you are. Sending healthy thoughts your way, The Singers

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  6. As always you are taking all of this in stride. Leason IV’s perfect match Marrow (PMM) has definitely minimized some of the G/H symptoms, as you say other’s have worse, but your transplant reaction report (TRR) would send most young ladies up a wall instead of to the hair dresser, a matinee, or for sushi. So kudos once again. We all got your back as you shoulder all of this from 18 docs to a sh*t ton of meds, creams and ointments daily with our love and admiration. Giv’em hell!

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  7. Dear Joselyn Happy to hear you are getting out and also happy to hear Rex is on the summer voyage. Warm warm wishes and lots of love JOHN

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  8. God bless you Joseyln. You are the strongest person we have ever know. Damn, I (Pete) have had the flu the last three days and em whining and carrying on like a baby. Moaning and having nightmares in the middle of the night. Cookie says I’m nothing but a big wimp. Her and Tyler want to shoot me. I told Cookie as she loaded the gun–“God Bless Joselyn Miller. She the bravest person on earth.” Cookie put the gun down and stayed the execution. You and Todd are the best and you will win out. Thank you for the blog. pete

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  9. Your post are awesome, I have been following your progress. Whe I read I laugh, then cry. Are you going to publish this? Hang in there. You are a brave woman and an inspiration to us all. Xxoo👍🌞💃🎉

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  10. Jos, That last .03% of your blood is putting up quite a fight against my 99.97… Maybe your hair will lay down when .03 gives up the fight. Even on the worst hair days I have never sported a fro. Love, Leas

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  11. hi jos – you are almost there! the top of the mountain – waiting to storm down the other side and leave that struggle in the dust – FINALLY!!! what a joyous feeling it will be – completely well and sporting a new hairdo, a brand new beginning!!! lets get in your new race car and paint the town red! xxxooo mom

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  12. Jos ,

    Thanks for your touching Father’s Day blog! I am so glad that your blood levels are still strong and normal and I pray that your awful rashes get better!

    You are amazing Jos and a role model to us all! I love your charms and need to keep an eye out for a special one. We need Rex updates, too and Danny will have a beautiful answer for your hair. He is the best!

    Love you and we are praying and thanks again for keeping us posted!

    Xoxo Gretchen and Dick

    Sent from my iPhone

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  13. Joselyn, We are SURE this is just a temporary distraction from your ultimate terrific recovery from all this shit – there I said it – no asterisks or apostrophes – we are all so lucky to know you and, as always, you set the BEST example for others to follow – you are amazing – if we could, we would have a box of relief delivered pronto – as is, we send you focused beams of energy to stay positive and kick this stupid setback out the f*@!ing door (too vulgar for your PG blog). Always thinking of you – S3

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  14. Nylesoj- mouth sores, frizzy-spotty hair, skin rash…just ugly bumps along the way, and you’ve kicked everything else in the ass! You are my HERO! Love you and think of you everyday my ttf!
    xoxo, your enfu pal forever jae
    ps. can’t wait to celebrate my 50th and your 28th on June 29!

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  15. Your courage continues to inspire me. I think of you guys often. Hope your journey through these challenges eases in the coming days! All the best! Your Canuck friend!

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  16. Jos – Thank goodness for brazilian blowouts, you’ll be looking quite smashing in a jiffy! You are right when you say you know and love the best three dads in the world. Lucky girl you are! Keep inspiring us with your wit and kick ass atitude. From the looks of that map you are doing a lot of good in the world!

    Happy 28th early! I remember that day well, loved the mermaid dresses, all the rage in the 80’s, and the bright happy colors. The party was off the hook, total “miller time” with guys in party mode with turquoise pants, dark sunglasses, neckties as headbands, great music, dancing, the pool… Great memories! Congratulations!!!

    Love you lots Jos xo
    P.S. I was so bummed that I was out of town and missed out on helping with Global Grins. Next time, anytime, I’ll be there.

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  17. Jos,
    Keep up the fight, spirit, strength, courage , attitude and know that you are very ,very loved and admired by many…
    Love you lots,
    Jennifer, Chanel ,Trent, Weston and Savannah xoxoxoxoxox

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