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. Sure hope today’s appointment was full of Hope & Promise…Sending love & feel good wishes. Big bear hugs & sweet sweet kisses. Auntie M & Uncle J

    Like

  2. Hi Joselyn, I just read your newest message, and hope and pray that your body has adjusted to the meds, and you continue to feel better, and better. I am so sorry for all that you have had to endure. David and I, and our family, admire your courage so very much, and want you to know that we are right there with you each day in our thoughts and prayers. With love always, Carole

    Like

  3. Joselyn…you are such an incredible inspiration. Your humor and spirit are amazing. My thoughts and prayers are with you and your family…Nov. 16 is my bday…good news will come your way that day!!!! Tell Todd I said HI…and the fam.

    Like

  4. Hi,
    i am the person from SAE, Formal Pledging Group. That a bone marrow transplant Jan.23 08, 2013 is my 5 years.
    I will see your 5 plus years in the years to come. This I believe and will be around to congratulat you myself.
    Please send my love and support to Todd,Rex & your lovely Parents.
    sally jameson
    patrick jameson (Sr.)

    Like

  5. Jos,
    I’m thinking about you all the time. I know it has been incredibly hard, all that you are going through. I wish it would all go away right now. Time must be creeping by for you, but I do believe that good health is in your future. When you are up and running again (and you will be) we will celebrate with a nice walk, something to eat that is not anti-bacterial and lots of hugs.
    XO Love, Mary

    Like

  6. Hey Jos,
    We’re on the late freight as usual, but we wanted you to know how happy we are that you are home. Home is good medicine. That beautiful view, ocean breeze with all the memories and comforts are good for the immune system. We’re praying for the reset in your bone marrow production, and we know you are going to win this one. There’s no one more positive and determined!

    Please know you are in our thoughts everyday. Let’s make a plan for old times sake, by this time next year we”ll be shopping Vet’s and eating Mexi on a Sunday in November! We love you very much. xxo Nettie & Doc

    Like

  7. Jocelyn,

    I’m happy to hear you are home and Todd is taking such good care of you. You are an amazing woman and I hope you keep up your high spirits – you are inspiring to all of us!

    Good luck on the next steps of your journey – I’ll be cheering for you all the way from Brazil!

    Leticia

    Like

  8. Joselyn…I hope being home makes you feel better and more comfortable….and that this “gig” is over soon. We distributed a bunch of toothbrushes to our OSB kids last week…and I know they are all smiling back at you. With much affection…..every day…. Silvia Marjoram

    Like

  9. Joselyn,
    I just learned of your condition and would love to communicate with you. I live in Emerald Bay and had a successful bone marrow transplant 5 1/2 years ago at City of Hope. I had AML Leukemia and my donor was my sister who was a perfect match. I was just there today for my 3 month check up with Dr O’Donnell. She and the fabulous care I received at COH saved my life. I can give you much encouragement and information to help you know what to expect with the transplant. Having a perfect and a family match is HUGE! You can and will do this. I am a phone call away so please contact me when you desire at 244-5555 (cell)
    Prissy Eeds

    Like

  10. Joselyn,
    Bill and I just heard about all that you have been going through. We want you to know that you are in our thoughts and prayers. You are an amazingly strong woman and we know that you will pull through. You are also so brave as we know how tough this road has been for you. We will continue to pray for your recovery.
    Always, Bill and Kathy Metzger

    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