Home At Last!

After 43 hellish days and nights, I was released from the City of Hope’s Helford Hospital last week.  I left my “bubble” twice during that time, once for a CT scan and once for a bronchoscopy (I started my stay with a lung infection/pneumonia, so they ran a tube down into my lung to check it out and take a biopsy).   I still love COH, but being in the hospital under strict sterile conditions is not my idea of a par tay.  My family and some friends made it quite a bit more bearable by loading my room up with horses (since my main treatment was ATG, which is a horse-derived serum of anti bodies).  My dad made an R-rated calendar/game that was up on the wall and we played every day.  Even the nurses got involved.  Only my immediate family was allowed to visit, and they made my stay so much better by being there every single day!  Rex made his way up to Duarte between SAE pledge duties, such as delivering cigs and JD to actives’ apartments and scrubbing the house kitchen.

My homecoming was not as glorious as I had hoped for.  The welcome home sign was wonderful, but as I got out of the car, my weakened legs gave way and I fell on the driveway, scraping my knee.  I hope no one was watching, because it was not a smooth move at all.  Once I settled in to my home bubble, I developed a hideous rash all over my body that was (and still is) quite grotesque.  Sleeping was almost non-existent.  All the meds I was given via IV in the hospital I was now expected to take in pill form, and this horrific f-ed up combo of 14 medications, which now had to make their way through my tummy made me incredibly barfy and nauseous.  In the meantime, my doc has adjusted some of the dosages, so I am not feeling nearly as bad.    Staying on top of these meds and the dosages and the timing of them is a challenge for me and my diminished intelligence – Does anyone know if there is a book out there called Medication Dosage for the Complete Idiot Who Has Lost all Mental Capacity?  It kinda sucks because I still can have no visitors and I am still on an anti-bacteria diet.

Another medication was added to my list, which is an anti-fungal given via IV every evening by Nurse Todd.  Each dose comes in a nifty little self-contained pump, which he hooks up to my PICC line. After about an hour, all of the liquid has been pumped into my veins and he unhooks me.

I am visiting Dr. P at City of Hope twice a week now, where he checks me out and adjusts my meds, gives me a blood test, and orders X-rays and blood and platelet transfusions.  He wants to give the ATG until November 16 to start increasing my blood counts.  If they are not trending upwards by then, we will start planning the bone marrow transplant with brother Leason as my donor.  The transplant will take place around the middle of December and I’ll be in the hospital for 4-10 weeks.  The procedure starts with one week of heavy duty chemo to rid my body of all my unhealthy blood cells and to shut down my immunity system.  Then I’ll receive my new bone marrow, which miraculously knows to go into my bones and start producing healthy bone marrow and blood cells.  This is called grafting and I’ll stay in the hospital until this occurs and I have no infections or other complications.

So I’m a pretty interesting specimen these days.  I did not say pretty.  I said pretty interesting.  I have skinny bird legs from lying in a hospital bed for 43 days.  The meds have given me a 7 month pregnancy belly.  FUSUOLS (F-ed Up Super Ugly Old Lady Skin) is in full swing.  My rash and accompanying scaly skin add a nice enhancement, as does my baseball sized hematoma that still sits under my muscle biopsy incision site.  My left leg looks like I have two knees.  And we can’t forget my oh-so-attractive mutton chops and mustachio!  I’m thinking about starting some dreads on my facial hair – could be a cool look, right?

If and when I go in for my transplant, I am going to really miss all the nurses who took such good care of me during my stay.  Two of my favorites were Jaclyn and Steph.

I want to apologize for not acknowledging all of the well wishes my friends and family have sent my way.  I have felt so tired, weak and nauseous that I have not been able to stay on top of that.  Please know that I appreciate every little thing you’ve done!

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).

61 thoughts on “Home At Last!

  1. Jos, you are in our prayers honey. Good strong healthy vibes coming at you and Todd. You will be beautiful again soon and all of this will be a fading memory. Thanks for taking the time and the effort to write this blog. It lets us all see how beautiful you are on the inside. You are a treasure. Love, the McDowells

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  2. Girl, you just do what you need to do. We are here to support you, not make more things for you to worry about. Fight On.

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  3. Joselyn, happy to hear you are home! Thanks for keeping us posted, so we always know how to pray for you…which we do often!
    Corey Bauer
    (Mike and Jean Casey’s daughter and family)

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  4. Thanks Jos for always finding the energy to give updates to all of us who love and miss you. My hopes and prayers are with you and your family daily. Keep up the fight!! You are amazingly strong.
    TTF
    Sharona

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  5. Jos, I love your blogs. You have to write a book when all of this is over. Hang in there. We are all sending our love and prayers. Love, Bonnie

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  6. Dealing with the changes to your body must well and truly suck! But I’m not aware of any beauty contest out there you need to get ready for. The love and beauty inside you just pours out on the page as you write and glows around you, I’m sure, for all your family and caregivers to see. We all know it’s never been how you look or what you do but who you are that counts – and you’re my hero!

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  7. Hi Jos. So glad to hear you are home for now. I know it is probably a much needed change of scenery! Remember Forest says “Beauty is as beauty does” which means you are still a remarkably beautiful person! We continue to pray for your complete recovery.

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  8. We are so glad to hear you are home at last! Thank you for updating us and sharing your journey…it is an amazing one! You’re strength and humor through this is beyond inspiring. Hang in there and know we are cheering you on for a speedy recovery!
    much love,
    Kemi

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  9. Keep ALL your energy for yourself, don’t worry about anyone else. Our job is to keep sending love and prayers, yours is to get well. Love you and…FIGHT ON!

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  10. Love your blogs!! Getting ready to watch Ducks/USC. Logan is all about it in Italy! Steve has his Duck shirt on and I’m the only Trojan around. Love your spirit and know you will be thriving soon. Our best to you and the family 🙂

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  11. Jos,
    When I read your blog you have me laughing and crying all at the same time..I wish i could give you a big hug and say how incredible I think you are and how lucky i am to have gained another sister..Your beauty as a woman is inside as well as outside …I am so blessed that my brother found such a woman as his life mate…Keep strong and know how many people love and are praying for you..
    Big Hugs ,
    Love you,
    Jennifer Miller xo

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  12. well ‘flying hell balls’ as my daughter says. you always knew how to do something in the most unique and outstanding manner possible
    horse energy is carrying you. the prayer warriors are raising their battle wings.
    remember… Frida wore her stash and unibrow with honor and pride – as do you! both talented and sharp-witted, both courageous and creative in pain.
    horse energy is firstly a power totem – leader – teacher – you.
    H.ON.E.Y. F/ B.A.D.G.E.R
    rest and recieve – publish the game with the book and know we won’t stop – ever – storming heaven and sending light daer one.

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  13. Studette

    Todd P. Miller 18101 Von Karman Avenue Suite 330 Irvine, CA 92612 949 225-4444 tpm@westernstatestech.com “Catch the Wave” http://WWW.WESTERNSTATESTECH.COM

    On November 3, 2012 at 1:09 PM Joselyn’s Brawl with Shulman’s Syndrome wrote:

    > joselynmiller posted: “After 43 hellish days and nights, I was released from > the City of Hope’s Helford Hospital last week. I left my “bubble” twice > during that time, once for a CT scan and once for a bronchoscopy (I started my > stay with a lung infection/pneumonia, so t” >

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  14. Hey Jos~Welcome home! Home sweet home feels so good after all that time in the sterile room at the hospital, of that I am certain! Don’t worry about the physical changes as once you are well, this will all go away and you’ll be your gorgeous self again, as I can attest. It’s all just side effects and once you are off the meds, you will be as darling as you’ve always been! Besides, no matter how you look, your husband, kids, family and friends all know you~your beautiful heart and soul. Nobody even see the bumps and rashes and weirdness~just your fabulous self! You are amazing at keeping your sense of humor and entertaining us all with your incredible wit and funny acronyms. Keep the faith and know we all love you!

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  15. Thanks for the update JM. (May I call you JM?) Sorry you are having some issues since you are home but Dr. P. must have found it normal and given encouragement as we lay folks add our two cents along the way. Of course you now have stellar nurse Todd who also has facial hair! Now you see what we have to live with on the subject of PITA stuff. (Pain in the A…..) . If you do the BMT you will NOT get Leason’s, I promise. Amazing that they have created the bubble at home, and as it gets closer to the 11/16 Horse med review date know that we are with you all the way. Nurse Todd will take care of all the fungi or he’ll be sent back to the agency. Love, Bart
    OMG, I gotta get past Rex pledging SAE. Hellllllp!

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  16. Thanks for keeping it real and reminding me that I’m big fat loser if I even think of complaining. Keep up the fight. Do love the pictures, gosh dang your funny and… brave and obviously loved and thought of by loads of Jos fans. Shout out to Nurse Todd! Go team Miller!

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  17. Joselyn we are praying for you every day. You are so brave and you have such a wonderful husband to take care of you! Keep up the fight and we are all here for you! Sending good thoughts and hugs….The Bridgfords. 🙂

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  18. Welcome Home!!! Despite the skinned knee and barfiness, we hope you are enjoying being in your wonderful casa – which is a display of your cleverness and creativeness. Take it all in. As to the facial hair – I say you start a new fad. Surely there are plenty out there who would follow your lead and be relived to give up waxing. Seriously – any person who reads your brilliant blog quickly knows you are truly beautiful. We are thinking of you lots and sending thoughts of wellness your way. Love, Stacy, N8, Elory and Elias

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  19. Love your blog. Hate what you are enduring. Admire your courage. Truly amazed at your wit and humor. Get well soon Joselyn. You and Todd are always in our prayers. Love you guys.

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  20. So glad to hear from you and get an update. I live for your blog posts and love your humor and always want to know how you’re doing. Thinking of you daily and wishing good thoughts to you! Xoxo jae

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  21. Joselyn, I just read your entire blog tonight…I wasn’t aware of your battle these past months until a couple days ago…I’m saying prayers for you and Todd! You have truly shown what it means to “Fight On”!! (your blog should be required reading for the USC football team…then they would know what it means to Fight On and would have been able to beat those ducks today!!) You can add me to your growing list of admirers….sending you tons of love, strength and healing energy!
    Love, Susie

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  22. Home sweet home… So happy you are able to rest and relax in your haven… Thinking about you daily and visualizing a strong, healthy, beautiful jos… I see her right around the corner…love you. Hugs and kisses. Karen

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  23. Oh Jos! I can’t believe you are going through all of this!!! We all love you so much and you are constantly in our thoughts, conversations , and prayers!
    You are such an inspiration, although I am sure that is not your goal right now. You are a trooper keeping all of us informed about this nightmare of a journey.
    All of us wish we could help in some way to make is easier.
    We love you kiddo !!!!!
    Nancy

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  24. Jos – YOU define “hang tough”……keep on keeping on……you
    ARE beautiful and your fighting spirit is simply GORGEOUS!!
    Xoxo
    Kristi and Doug

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  25. Joselyn, I’m so incredibly happy you’re home. I’m just so sorry for all you are having to endure. Please know I am thinking about you every day and knowing you’ll get better. Hang in there girl. Sending all my love, heartfelt prayers, healing vibes and hugs!! ❤ ❤ ❤

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  26. Jos,

    Thanks for the update! We so appreciate and look forward to them! We will pray that your blood counts will increase. You are amazing and so strong through this incredible journey.

    It was a good call to miss the SC Oregon game! You had the best seat in the house. Love you and know that we are praying and thinking about you everyday.

    Gretchen xoxo

    Sent from my iPhone

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  27. “home again, home again, jiggety jog!”
    we hope you are able to rest on this Sunday morning in your own home, in your own bed!
    Your ruby reds are way prettier (&yes, more interesting!) than Dorothy’s ever thought of being!
    Keep the faith!
    Xo, Cooper 5

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  28. Aloha Jos!

    Spoke to Jae last night after the game. (Sorry by the way!) She gave me an update on your progress. I wanted to let you know that you are in my prayers daily. Your strength and humor are an inspiration. Keep fighting.

    All my best,
    Jim

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  29. Wow, Joselyn…I had to take a day to allow all that you shared to sink in. I remain in great awe of you and your journey. I only wish you didn’t have to go through so very much to share this story.
    My heart goes out to you and your family. I have included you on several prayer chains and remain in prayer for your complete healing.
    May you continue to find strength and God bless you, your humor! Just as I feel I may cry, you say something so hilarious, I’m laughing out loud…your resilience in full display.
    Love and huge hugs to you!
    Linda…..and our guy Ry, who was always your fan 🙂

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  30. Joslyn, My parents keep us updated daily on your progress. You, Todd and your fam are in the Pickett family’s constant thoughts and prayers. I am so sorry to see you going through but your positive mental attitude is inspiring beyond words. I wish you strength, healing and a speedy, painless recovery. Sending lots of love, Kaley

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  31. Hi! So glad you are at home!!:)
    Wasn’t the weekend beautiful? Do u have a big window by you to look lout? The sunrise on Sat was wonderful! Mom loved hearing from you! Take care!
    Julie

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  32. We love you Jos! Hang in there girl! Tom Petty, Won’t back down! Pretty much sounds like your at the gates of hell! Persevere well! And know you are loved and cherished and prayed for daily. Love, Carolyn and the Clan.

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  33. Hi Jos, We are glad you are back home. It sounds like the medication transistion from the IV to pills was painful, but hopfully that is over and you are feeling better. We are all hoping that the serum kicks in and you start growing that tail soon. Those legs are not the ones I remember, so maybe the serum will give you the legs of the Trojan horse or of the true filly that you are. All kidding aside, you are in our thoughts constantly and we get updates from Leason and Todd which help us feel close to you. I wish I could trade places with you, or take some of your pain – you have certainly had enough to pass around, but I doubt I could be as courageous as you have been. You are a true warrior. Love Lynn and Carolee.

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  34. Joselyn, You are trooper! I feel so bad for all you are going thru. How you are maintaining such a great sense of humor is amazing. We hope and pray that you are on the road to recovery and that it will be quicker now that you are home. Keep your spirits up.
    The Cargile’s

    Michael Cargile | Senior Vice President
    Voit Real Estate Services
    2020 Main Street, Suite 100 | Irvine, CA 92614
    T (949) 263-5338 | F (949) 261-9092
    mcargile@voitco.com | http://www.voitco.com
    License #00491668

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  35. Joselyn,
    Dana and i read your blog with tears in our eyes. We are so sad for all that you are going thru. All of us think about you every day, hoping and praying it will be over soon and you will be well and fully recovered…so happy you are home. Sending good thoughts your way……
    Love
    Steve,caron,dana,steven………

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  36. there are no words…wow….you poor thing….i am amazed everytime I read your blog that you still maintain a steady stream of humor through all this..omg you are amazing….still think you need to publish this stuff:) so sorry you are dealing with this…keep fighting girl…you can beat this….praying for you and your family:) xoxo

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  37. Aint it SA-WEET to be HOME!! Im sure there’s plenty to do….all that laundry that piled up in your absence!! Maybe some of those horsey’s will come in handy!!
    Because of you….Ive added shooting range to my “to do” list! Paige and I are going
    to check it out! I’ll take a pic and send it your way! Lots of love to you and your
    wonderful and supportive family and friends!! Someday Im coming for a visit !!
    xoxo Martha Olson

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  38. An election day joke to make you smile (sorry about the last, this is better)

    I’m not a member of any organized political party, I’m a Democrat.

    Best Wishes, Luke

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  39. So glad you have been released/paroled from the bubble! Yeaaa! You must have been a good girl. Think about you all the time & hope that those horses giddyup & get into gear soon. Take it easy & rest that body. Sadly, with my varicose veins, cellulite, lack of ankles, etc, your legs DO look better than mine! XOXO

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  40. Jos-Cory and I cried a bit and laughed very loudly. Good for you on the humor. We know there is nothing funny about your ordeal but your faith, family, friends and funny will prevail. We are praying for you. We will talk soon outside the bubble! You rock!

    Sent from my iPhone

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  41. Just read your last post…I’ve been waiting for good news and being home certainly is but gosh darn why can’t they figure out some better way for you to take your meds!!! So sorry, no one likes a tummy ache. Hang in there, I hope there are some yummy things for you to eat on your special diet. However the only thing better than food is love and you certainly have that covered. I also hear love is the best medicine. You and your family have all our good thoughts, positive vibes and love. : )

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  42. Hi Joselyn and Todd.
    Just a note to let you know how many people are thiinking of you and sending a big hug and a lot of love………Mindy

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