Big Thanks from the Bubble

There is no way to properly thank everyone who has reached out to me with encouragement.   First, I want to thank Todd and my parents for being here every single day, and Leason, Mychaela and Rex when they are able. So many of you have volunteered to drive up and visit, although my docs have restricted visitors to immediate family.  Many have also volunteered to donate blood and platelets.  You all ROCK!!!  I wish I could thank each of you wonderful family and friends individually!  I’ve received prayers, emails, fb messages, blog messages, text messages, calls, cards, letters, recipes, articles, photos, drawings, books, movies, magazines, and art supplies.  I’ve received p.j.’s, slippers, socks, a horse blanket, beautiful body lotions and exquisite soaps.  The flowers and succulents are gorgeous.  The champagne and home cooking has been divine (sooo missing that right about now!)   I’m  loving the electronic gadgetry.  The jewelry has been so generous and thoughtful.  My thundering heard of horses has given me encouragement.  Loved the stuffed animals, and the goody boxes!  The Halloween, USC and political bubble décor has really made this place “my own.”  I even received a home made wall-mounted calendar/game filled with all the typical Pomeroy crude humor you would expect.  For example, it features Bernard and the twins, which I learned about at an early age 🙂  It has served as a great time keeper as well as a source of amusement for not only me, but for my nurses and doctors.  Please know that every thought or item sent my way has been greatly appreciated, and I am truly thankful for all you have done!  I know I’ve made some sort of impact (not necessarily good), when my usually very conservative friends and family start dropping f-bombs 🙂

So, tonight will be my 36th at City of Hope.  I thought I was coming for a week’s stay of ATG treatment (the horse antibody serum), but so many side effects popped up that they had to keep me to try to crush those while improving my blood sitch.  Most of those secondary problems are under control now that they are actually talking about possibly letting me go home next week!  My fungal lung pneumonia is not gone, but it is quite a bit smaller, according to my latest CT scan.  We’re still waiting for the ATG to take full control of my blood counts, and according to Dr P, it could be another four weeks.  He thinks if my pneumonia continues to shrink (and is approved by the infectious disease team here) and I’m tolerating the pill versions of all my IV meds, I could go home late next week.  It would still be a bubble sitch at home, but at least I wouldn’t have someone wake me up at 4am every morning for AFBT- (Another F-ing Blood Test), alarms wouldn’t start blaring if I got out of bed to pee in the middle of the night, and I’d be free to move around the house (I have been outside my bubble on exactly 4 occasions) – 2 CT scans, a bronchostomy, and an X-ray.  If after another 4 -6 weeks, there is no upward trend with my blood counts, we will move toward a bone marrow transplant, thanks to my hero and brother, Leason IV.  That would mean a much more lengthy and involved procedure for me.  For now, we’re still betting on the horses!

I’ve actually spent my time at City of Hope in two separate bubbles.  About half way through my stay, a nurse told me that another patient needed my negative air pressure room and that I would be moving to a positive air pressure room.  My first room was located at the end of a corridor, where I did not hear or see much through my sterile vestibule.  After my parents loaded up all my sh*t onto the COH wagons, and moved me down the corridor, I settled into my Bubble #2, which has a fantastic view of the San Gabriel Mountains.  It’s located directly across from the main nurses’ desk, so I get to hear all details of my fellow patients’ situations and the personal lives of all the nurses.  Think General Hospital or ER, whatever your generation was into.  BTW, WTFWLT – What The F- Was Laura Thinking with that disaster on top of Luke’s head???

I finally settled into my new bubble and had the nurse give me a shot of Ativan, so I could sleep, which I was doing until around 11:30pm, when a male nurse said very close to my ear, “Shannon?”  I was groggy, but it almost sounded like he said “Shannon.”  As he proceeded to hang IV medications and who the hell knows what from my IV tree, I woke up a little more and said, “No!  I’m not Shannon!”  “Are you sure you’re not Shannon?”  “Hey pal, I don’t know who Shannon is, but I’m Joselyn (then I wish I said, and I’m gonna mess you up.”)  He then gathered up his meds and gave some lame apology and crept back out into the nurse world.  I’ve gotten to know the awesome nursing staff pretty well, and I’ve never seen him since.  City of Hope is THE BEST, so this entire episode was probably a hallucination.

The doors in my new area have that automatic controlled close thing, but instead of closing with a gentle click, they close as if they’ve been slammed by a 14-year old girl who’s been told she can’t go to Trevor’s epic party, especially dressed like THAT!  My new next door neighbor has changed quite often.  First I remember a guy who was hell bent on coughing up not just his pancreas, but also one of his kidneys.  After a couple of days, they moved him to another area and brought in a girl who hosted bubble raves every night.  So I’m trying to sleep with two tubes coming out of my arm, knowing the 4am blood draw is on the horizon, and all of a sudden, PSY shows up and GangNam Style starts rocking the 5th floor!

So, in a few weeks, we’ll know if the ATG treatment is going to cure me or if we’ll need to move to a bone marrow transplant, thanks to my heroic brother, Leason.  We have heard that oddly enough, some of the traits of the donor can be inherited by the donee.  Such things as blood type, allergies, etc.  I’m wondering about some other specific traits:

astoundingly hairy chest and knuckles

toleration of tomatoes

talent for long distance running

stinky feet

thick, gray hair

obsession for Formula I racing (setting alarms throughout the night to catch races in Europe, the Middle East and Asia)

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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).

60 thoughts on “Big Thanks from the Bubble

  1. Good morning, Joselyn. I just heard about this journey you are on. I’m sending you every good thought and wish that your treatment will work and that you’ll be home soon. Gypsy

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  2. Jos…so que pasa at the Bubble? Are you moving soon? We’got to get you out of there…..you have your “groupies” (yes because you are now a rock star!!!) cheering for you and sending loving thoughts… rest well now… XXOO Silvia…

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