Down the Stretch with Woodpeckers, Blutarsky & the Bubble

So after gearing up for a horrific 4 days of shaking, baking, barfing and feeling sh*tty, I am stoked and thrilled that I am not having much of a reaction to the ATG horse antibody infusions.  They have given me lots of great pre-meds to help ward off any of the nausea problems.   They are not giving me anything to guard against growing a mane, tail, forelock, hooves, or withers, however, so I am quite concerned about an equine transformation.   I have a private nurse who literally sits next to me for the 6-hour infusions to watch for any rejection symptoms and to take vitals every 30 minutes. She has an emergency kit of drugs to plunge into my bod if need be.  So far, the first three nurses have been pretty bored, which has been great news for me.  With three infusions down, I am heading down the home stretch tomorrow 🙂

No, it’s not been the ATG that’s f-ed with me, it’s been this damn lung infection and now, the newest gate to clear:  abnormally low heart rate.  You CANNOT be serious! (insert John McEnroe’s voice)  It’s been dipping into the 30-somethings per minute and as usual, everyone is concerned.  I had two EKG’s yesterday and another today and I will be wearing a holter monitor for 24 hours that will give my newest team member, cardiologist Dr. Y, a continuous report of my heart rate.  I have been monitored with the most ANNOYING ass wipe alarm that blasts every time I drop below 40 beats per minute.   Yesterday was like one loooooong continuous beep.  Dr. P is thinking I may have to move to the fourth floor, where they have heart-monitoring beds.  I don’t want to move!  I really like my KANPSBAFH (Kick Ass Negative Pressure Sterile Bubble) and all the awesome nurses I have gotten to know and have made my hectic stay pleasant.

BOTFUC! (Bring On The F-ed Up Complications)  Now the 2 trick pony is to get the little f-er that’s messin’ with my lung and to find out why my heart is pumping like an old donkey and not a thoroughbred.  TPMNAAFAHNAA  (They Promised My New Antibodies Are From A Horse, Not An Ass)

Here’s a peek at my Saturday night/Sunday morning from hell:  9-11:30pm – blood transfusion, 9pm – vitals, 9:30pm – vitals, 10pm – vitals, 10:30 – vitals, 11pm – vitals, 11:30pm – vitals, 11:30-12:30am – Voriconazole infusion, 12am – vitals, 12:30am – vitals, 12:35 left to “sleep”  (this is code for lying in bed, closing your tired eyes, and settling into…. a bevy of woodpeckers trying to peck their way out of the IV pumps 10 inches from your head competing for loudest aggravating noise of all time against alarms going off for low heart rate followed by a nurse constantly coming in to take your pulse), 4am – blood cultures drawn, vitals, 4:30am – left to “sleep” again, 6am – EKG.  Not all nights are this eventful, but that f-ing 4am blood draw is written in stone, along with the f-ing woodpeckers pecking pecking pecking pecking PECKING!  NTIFTBDAT (Night Time Is For Tests, Blood Draws And Transfusions)  NO sleeping allowed.

My four IV pumps (soon after there were seven)/woodpecker prisons with all the hanging goody bags

I’ve received several platelet and blood transfusions already during my stay, including the ever-popular middle of the night version, because my blood counts remain in the tank.  In fact, just yesterday, IBMWBC!  (I Blutarsky-ed My White Blood Cells)  For those non-Animal House affectionados, that’s a 0.0 score.

Dr. P thinks I’m retaining too much hydration fluid, so he has ordered a special little pill I now affectionately call DPPP (Dr. P’s Pee Pill).  It works!  The only problem is that I’m connected to 4 IV pumps 24/7 that I need to constantly unplug and take with me to the little girls’ room.

Now a little on my approved diet.  I’m on the “bacteria free” diet, which rules out ANYTHING except what’s printed on their special menu.  Limited choices.  Limited flavor.  Limited appeal.  Limited taste.  Limited chance I’ll be stoked after a 3 week stay.  Yes, my friends, ABFHDB (A Bacteria Free Hospital Diet Blows)

My docs are not allowing anyone to visit me except healthy immediate family members.  Todd and my parents have been here in their Haz Mat gear everyday to keep me company.  Today my brother, Leason, donned the mask and gloves as well, and my dad brought supplies for a group design project to occupy our time in a constructive and creative way during my 6 hour ATG horse transformation I mean infusion.  This weekend Mychaela joined the group and they presented me with a small collection of equine friends to adorn my bubble, which joins Todd’s awesome sign he brought and immediately installed 🙂

Mychaela with some of the Bubble’s new equine decor
Mychaela and Gramma fighting on through the Bubble’s glass during the SC game

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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).

46 thoughts on “Down the Stretch with Woodpeckers, Blutarsky & the Bubble

  1. Wishing I was there in Haz Mat gear to keep you company! Seriously… your heart now, that’s not fair. Enough already and I wish you would get a break. Keep up the positive juju Jos! Attitude is everything and girfriend you’ve got it! Love your partner in crime and boom boom sister…xoxo jae

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  2. Dear Jos. Keep up the good fight. Sounds like a horrible ordeal but what piqued my optimism in the last 2 posts is the 3000 first level Marrow matches available for DNA testing if Leason is not a good match. That is a huge number. Of coruse, that’s only if everything else doesnt work and they sure are trying everything! City oif Hope is a miraculous place. Fight on for the Trojans and I’m rooting for and betting on you. Bart

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  3. Sending love and gratitude for the post. Really appreciate being updated realizing with no sleep and constant wood pecking this can’t be easy! Love my childhood super special friend’s (Jeef’s) BFF! Get well soon sweetheart! You’re amazing!!!! <3<3<3

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  4. Hi My most special ,incredible ,heroic ,best spirited Sister in Law…..Wow I always believed that a persons ‘true character ‘ shows up when the going gets tough” You have showed that Jos…I loved the picture of Marleen and Mychaela ……Sending you my love and a big huge hug…xoxo
    Love you,
    Jen

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  5. I have been quietly following your amazing saga. You are in my thoughts daily.
    I have a candle I light for special people. I am lighting it for you and your family and sending my love. Kathy Thornhill

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  6. Time for a good pair of noise blocking headphones? They should cancel the woodpeckers, and maybe even the nurses coming in to take vitals….maybe?

    I think your “Traveler” juice is in mourning after Saturday, but it’ll rear up soon and start kicking booty.

    FIGHT ON!!

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  7. Hi Jos: Glad things aren’t as bad as you thought they would be (nausea-wise anyway). Hopefully, they will get that heart rate back up soon. I would think a low heart rate would be much better than a high one. It sounds like you are doing okay and being very well taken care of at the City of Hope. Keep those nurses bored! We don’t want them to have anything to do except watch you. If you entertain them like you entertain us, they probably don’t want to leave!

    I hope the time goes by quickly and you continue to get better. I know you will. I just hope you don’t start doing that snorting thing horses do with their big lips. It’s always scared me a little bit. Oh, even if you did, we’d still love you!

    Take care. We love you.

    Love, Auntie Wendy and Uncle John

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  8. What an ordeal – I can’t believe how much you are enduring with such humor and grace. Thanks for keeping us informed of your journey and I hope and pray you get some much-needed rest and good news soon. Mary

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  9. You have so many players on your team, you are going to need to either put some on injured reserve or start a farm team! You are such a good writer, Jos….I can’t wait until you get this behind you and write a book about your journey. I will be so proud to tell people – “Yeah, that best seller, the one on Oprah’s book club – that was written by my cousin!” I love your Animal House references…maybe throw some Caddy Shack or Airplane ones in there, too. Hang in there Jos…and as Chip said, “Remain calm…all is well!”

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  10. Hey Joselyn:
    Keep on fighting! I’m thinking of you constantly. I’ve even taken up swearing! Using code when I remember and WTF if I don’t !
    Good vibes in constant waves being sent your way! Fight on!
    Karen

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  11. Looks like you are going to end up with another collection AND an award for the best decorated bubble! With those 2 extremely cute cheerleaders on your team you are already a winner! Know that we too are cheering you on from the rails! Sending prayers your way.

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  12. Good to hear that you’re having little rejection to the ATG. Also so happy to hear about the high number of potential donors. You’re in my daily thoughts and prayers. I’m thinking of you and your family often and I know you’re strong and will continue to fight. Please remember that you have so many people fighting for you too. Try to get some sleep and I like the idea of headphones.

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  13. Hey Joselyn:
    Tactical food recommendation!
    I LOVE the high protein chocolate drink from Costco.
    If you have a Costco nearby and can send one of your awesome team on a treasure hunt for it…… if you like Chocolate – it’s like a rich creamy milkshake – low carb but high protein. Each one is individually sealed in a little container – no mixing required. I hope it would pass your Dr.’s strict requirements? and it would be YUMMY!
    I’ll post a picture to facebook.
    Hope it helps!
    Karen

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  14. Hey Jos,

    OMFG! Keep up the fight. You can beat this thing! You are in my thoughts and prayers. On a semi positive side the football game was a disaster so you did not miss much there! I may have to dig my Bruin attire out of the attic!

    HUGS

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  15. Jos –

    Have you started talking s#%t to Shulman yet. In a small sense it makes me think of Forrest Gump when Lieutenant Dan is on top of the mast during the hurricane pretty much saying ‘is that all you got.’ Low pulse – no big deal…what else you going to throw my way 🙂 Having said that, the bacteria free diet was kind of a low blow especially since you know about La Paloma. That is a bummer and I feel for you.

    On a more positive note. I know this is SFPA (So Five Posts Ago) but I’m surprised that there weren’t more comments about the facial hair – particularly the mustachio part. Honestly, I’m jealous. What style are you going to rock – Pencil, Fu Manchu, Handlebar….? http://en.wikipedia.org/wiki/Moustache

    While the Brothers Lombardo have been blessed with a pretty darn good life we were not graced with the ability to rock a beautiful bushy stache. If you get close enough to recognize that we’re attempting to grow one at best you’ll think – 70s blonde porn star stache. Far from Tom Selick/Magnum PI.

    For a polo tournament the team grew mustaches. Brothers Lombardo had to resort to hair club for men which only ending up dyeing our upper lips brown. Enjoy the stache and if you can pocket a couple of pills for us we would appreciate it.

    Keep on trucking Jos – lots of love from the Brothers!

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  16. can a girl catcha break? Jeez, the heart, the blood….You are definitely a fighter, Jos. Hang in there, we are cheering with Mychaela and your mommy. Complete with pom poms.
    Sterile hugs from afar. Karen Kushner

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  17. Jos-glad to hear the spirits are still up, you amazing woman!!
    Damn the ticker prob….I’m sure they will get that under control soon as they know WAY more how to handle that sitc than damn Shulman. With the darling team you have it’s easy to keep smiling……we are with you all the way!!!!! There will always be plenty of burritos when you are done with this rodeo! Can’t wait for it to happen and you can blow that whole corral and get back here to ride in the sand!
    XOXO

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  18. I am sorry. This is beyond my comprehension. I guess I am not that smart. I fing hate this Schulman thing and am wishing so hard that the tide will turn soon for you. Thank goodness you have the power of love on your side. That man and those kids of yours are incredible and I know why. Much love and strength. Debbie & Lee Drucker

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  19. Jos –

    Your positive spirit comes through always! The humor in your blog posts makes me laugh as I reflect upon your determination every day! The support you have from your wonderful family & friends will be there at all times!

    all the best,

    Steve

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  20. Remember, after McEnroe screamed at the chair umpire his “You cannot be serious!” line, he added, “You guys are the absolute pits of the world!” which is probably what you’ve felt like yelling at your red blood cells, white blood cells, and platelets! And, in another infamous McEnroe tantrum, he hacked the heads off the courtside flowers at the US Open. (Or, wait a minute, was that Connors? Can’t remember which of the two brats did that.) Regardless, is there any chance a member of your fam could sneak a tennis racket into your bubble so you could use it to hack the hell out of those woodpeckers? The tennis greats have nothing on you; you’re the real champion. Love you and thinking about you always–Cathy Kent

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  21. Jos-we are saying prayers for you and a speedy recovery. Stay positive and you can beat this. Our thoughts are with you.

    Cory and Lisa Alder

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  22. Carissima Joselyn

    I have been reflecting ion your amazing sense of humor and here is my take on it: it is an absolute act of generosity on your part towards all of us and especialy your loved ones….may the prayers of someone who does not pray (me) be heard up there! Much love, affection and admiration!

    P.S.I can’t wait to see your mane and tail!

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  23. Jos,
    I could not believe it when I read about your slow heart rate!!!! ENOUGH ALREADY!! I am thinking about you and sending lots of love.
    XO Elizabeth

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  24. Dear Joselyn,

    YOU are truly extraordinary! I think about you daily and praying for you and your amazing family!! Loved the cheerleaders! Were cheering along with them!!!

    xo Patty

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  25. Hi Joselyn,

    I left my first reply after reading your blogs up through your “beautiful esophagus”, and now realize there are a lot more! I hope you found it.

    David and I are thinking of you, and praying for you daily! As I said before, you are truly amazing with your humorous explanation of all you are going through, and your fabulous attitude!

    I am so glad to hear that you haven’t had a bad reaction to your newest treatment. I was given rabbit serum when I was six for Pneumococcus Meningitis, and no one has told me that I have rabbit ears, or wiggle my nose abnormally, and I don’t even hop well! So don’t order those fancy horse shoes yet!

    You are very dear to me, and I have such admiration for you!

    Much love, Carole

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  26. J-Dawg!

    After reading every single one of your posts, I am feeling extremely proud of you and your family! It is amazing that you have decided to create this blog and boy it is comical (and a little upsetting)…I am wishing you a speedy recovery and want you to know you are a BFD (big fucking deal) and a BA (bad ass). I will be thinking of you everyday and wish that I could come visit your KANPSAFH! Stay strong and keep blogging. You are educating the world and serve as an inspiration to all!

    Sending many hugs, kisses, and lots of love always,

    Your girl, Miami ❤

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  27. Jos, Thinking of you!! GO LEASON!!!! Love your cute cheer leaders! Hope you realize that you have cheer leaders from all over the world!! We’ll push the WETFII (Whatever the f… it is) back….. WAY BACK!!!!!

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  28. Jos,
    Larry, the girls and I are all praying for you! I hope its ok if we join the band wagon. Your sense of humor is amazing! Seriously, you are going through hell and entertaining us!!! I can’t even begin to imagine how much all of that sucks. Fight on and kick it’s its ass! I have a healthy horse if you need some more of the equine whatever it is. Please know how much everyone loves you and wants you well!!! You’re lucky to have your amazing husband and family with you all the way!!! If you have’nt already heard the Trojan’s beat the #1 ranked Bruins last night in volleyball!!! Yes!!!!! Much Love, Trish, Larry, Lindsay & Greer XOXOXOXO!!!!

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  29. If you are hoping to make a little some some on the side, can you slide out a few of Dr. P’s Pee Pills to Todd? I’m coming down next weekend and can make the redezvous. Also, I am making an offer on a new house tomorrow and need your modern eclectic aesthetics. Concrete floors throughout. I want it Jos wild! Get better and design the interior for me.

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  30. Oh Joselyn — I’m thinking of you and rooting for a turn for the better! I ran into Jae J today at tennis, her team was playing another team at our club. You are on both of our minds daily. But what I want to know is, where were you hiding all this amazing writing talent — seriously, you are such a gifted writer. Thank you for letting us in and allowing us all to pray and root for your recovery. Let’s hope the Trojans give you something to cheer about this Saturday — last week’s lost, well it BLOWS. Love to you, Tara (Owens) Balfour.

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  31. Hey J-Rock!

    Been thinking and praying about you lately. Saw Gianca and Logie in Santa Monica the other night. Miss you!

    Your incredible, keep it up! Excited to see you when you kick this bitch.

    Nothing but Love,
    Tyler 🙂

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  32. Joselyn: Sending you special “get well” thoughts. I met your wonderful mother in a writing class (Marilou’s) and I understand your ability to write well …and with humor .. It .is in your genes. A former classmate told me of your ordeal. I want to extend my positive thoughts and prayers for a speedy recovery with as little pain and discomfort as possible. It appears that you have a lot of loving family and friends wishing you to recovery.
    A silly “get well card” that I had seen years ago and that I purchased several dozens to send to others because it made ME laugh : by Gary Lawson …a man dressed in a hospital gown seated across from the doctor. The doctor looks at the cows’ heads coming out of his knees and says”Cows, Mr. Jones, Yes, you’ve got cows.” (Perhaps it is funnier when you see the card!)
    I hope you can laugh a little more and that your spirits soar with the blood cell count and the heart rate. …Paula Pichon

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  33. Hang in there Jos! I’m thinking about you all day long. I know you are going to come through this in one piece. I can’t wait to just have lunch with you. What we take for granted……
    XOXOXO Love, Mary

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  34. I have been thinking about you all week and was wondering when you get through this, where you will go on your first trip/adventure?? Masses and masses of love to you Joselyn. Love, Rosemary & Bill

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  35. You are amazingly strong and my prayers are always with you. in the plus column, my daughter is outgrowing her horse and will be looking for a new one soon, so let me know how that mane and tail grow out, because you would make a beautiful horse just like you are a beautiful human!

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