Hold Your Ho Ho Ho rses

Christmas came early for me this year!  I must have been a very good girl, because I got the best toy of all – a PICC line!  I know you’re all jealous as hell.  This device allows me to avoid the countless pokes my condition brings with it.  It’s a long-term port that has 2 tubes for drawing blood out and hooking up IV meds or transfusion blood products.  Just in the last 24 hours I have spared my weary veins 9 pokes 🙂

My new toy makes me the most envied kid on the block.

I was more than a little nervous about getting the PICC line inserted, because I had read what the procedure entails:  basically inserting a long catheter into my upper inner arm, into a deep vein, through my muscle, around my shoulder to a spot just above my heart.  Just didn’t sound pleasant to this girl who is not a fan of pain.  I had a fantastic nurse, Ginny, do the procedure, and she walked me through every step.  It really wasn’t that bad.  Definitely worth it!  Kinda blew the nickname Jae had for me, though – Pokey.  Get it?  Pokey, because of all the pokes and Pokey is a horse.  Not really a horse, more like a pony pal.

My pony pal Pokey

So I got my PICC line and I’m all ready to check into City of Hope’s hospital to start my ATG horse antibody shake and bake treatment, but of course it couldn’t be that simple…  After a PICC line insertion, they always do a chest X-ray to make sure the catheter is in the right spot above the heart, but not piercing the lung…  My X-ray showed a dark spot on my right lung.  Wooop de f-ing doo!  My docs are extremely concerned, because my body has no defense to fight off an infection at this point, and it’s a dangerous sitch we find ourselves in.  Once again.

This discovery, which we wouldn’t have known about if I wouldn’t have had the PICC, has set off a firestorm of follow up exams and tests to try to determine WTF is in my lung.  I went straight to have a CT-scan of my lung, I had 4 pokeless blood cultures done (thanks, PICC line!), I had Dr D (infectious disease specialist) added to my team, who did a thorough exam and work up on the possibilities, and I had the pleasure of enduring a bronchoscopy and lung biopsy.  Just because I’m certain you’re dying to know, a bronchoscopy goes like this:  they first give you a peace pipe apparatus, and you have to breathe in this awful tasting stuff that coats and numbs your throat, then they stick a scope down your gullet into your lung and take a look around and collect a sample of the infected area.  The best part is that I got to perfect my moon walking, because I had MJ’s Propofol knock me out once again.

My first night was miserable…  I started an antibiotic that was aimed at killing off whatever is in my lung called Abelcet.  Over the 4 hour infusion, which went from 10pm-2am, I shook violently and had massive chills.  In addition to this fun, I had blood drawn, vitals taken, several other antibiotic infusions, a platelet transfusion and 2 units of blood transfused.  I had a fever throughout the night.  Basically, an f-ed up night with no sleeping.

We did receive some rare, good news!  After searching the national bone marrow donor list, it looks like I have over 3,000 potential first level matches.  They still have to go through the DNA matching phase, but with 3,000 possible matches, my docs are very confident that they will find some good matches for me, in case my brother is not a match.  Once again, I told them that I am interested in finding a match that is extremely good looking and highly intelligent 🙂

Dr. P visited me during his rounds this morning, and he and the COH Hematology Team received some results back from my bronchoscopy.  They believe it’s bacterial pneumonia, and they want to proceed with ATG infusions and treatment for the pneumonia at the same time.  It’s a little dicey, because the ATG is going to lower my white cells even more than the .3 level they are currently measuring, which would significantly lower my ability to fight an infection even more.  The white cell count in a normal person is 4.1-10.9.  I will have a private nurse in my private negative pressure room, sitting by my side during the 6 hour infusions for the next 4 days to watch me like a hawk for any signs of rejection.  I will be in my room for about 3 weeks, because I will be watched for ATG after effects (mane and tail, joint pain, flu symptoms, etc.) and to make sure the pneumonia gets completely cleared up.  So, a little change to the original plan, but the rodeo will begin today.  I’m gonna be so pissed if I am shaking, barfing and/or too nauseous to root on my Trojans today!  I‘m definitely planning to Fight On!

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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).

57 thoughts on “Hold Your Ho Ho Ho rses

  1. You are riding the bucking bronco and it is tossing you around but I know you will ride until it stops bucking and it is tamed down. I see you with your cowboy hat in hand riding around the ring and we will all be cheering for you! And the horse’s name is Pokey! Ride’m and fight on! Thinking of you with all the positive energy possible.

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  2. Okay, could you possibly be a more impressive human? Just heard through Danielle about your challenge (I’m good with understatement)and can’t tell you how inspirational, moving, and absolutely hilarious your storytelling is. You have always been such a creative,unique, and strong individual and those traits are what will guide you through what absolutely must seem like a nightmare. We are holding you and your amazing family in our hearts and know that you will prevail. All that time on volleyball courts taught us something, right? Much love to you, Patty, Frank, Danielle, Devon, Scott, and Maddie.

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  3. Joselyn – my husband, Dave Chase, built the house your dad designed for the Devines. I have met Leason but do but claim to know him well… I have been reading your blog and in the midst of being appalled at your battle and sorry for your illness, I find myself laughing hysterically at the humor and grace you display throughout all you endure… You are a fantastic writer and envy your talent… 🙂
    A good friend of mine works at COH and may check in on you, and I wanted to give you the head’s up so you won’t be confused. Her name is Tricia Kassab.

    Please know that you are in my
    and Dave’s thoughts and we that no horse-related symptoms rear their ugly little head.

    A very goods friend

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  4. Joselyn – my husband, Dave Chase, built the house your dad designed for the Devines. I have met Leason but do but claim to know him well… I have been reading your blog and in the midst of being appalled at your battle and sorry for your illness, I find myself laughing hysterically at the humor and grace you display throughout all you endure… You are a fantastic writer and I envy your talent… 🙂
    A good friend of mine works at COH and may check in on you, and I wanted to give you the head’s up so you won’t be confused. Her name is Tricia Kassab.

    Please know that you are in my and Dave’s thoughts and we that no horse-related symptoms rear their ugly little heads.

    Paige Chase

    A very goods friend

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  5. Jos
    I was hoping to be a potential bone marrow match however the “intelligent and good looking” request throws me out of the running… Your amazing Jos and you will win this battle I am certain. your blog rocks and your strength and attitude while confronting this blood disease has all of our respect as I have learned from you that perspective is key!!!!!!!!!!!!!!!

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  6. Hope your day went well! I think of you so often. You are in my prayers..
    I had a love/hate relationship with the hospital. It was a very safe place for me and the nurses were wonderful
    I guess it was easier for me to be there if I had positive things to think of.
    Sleep well!
    Julie

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