Marrow, Moon Walking and Mid-day Mexi Magic

Wednesday I went to Dr. G’s (neurologist) office for another MRI to check the inflammation of my muscle fascia.  Literally 2 seconds after getting dressed, I was called back in for a second 45-minute session in the tube, this time with dye.  UGG!  I mean FUGG!

The results showed that the inflammation that was huge in the beginning of all this is almost completely gone, which I can feel in my much improved flexibility.  The best news was that Dr. G saw that what I could have sworn was a stick of butter under my muscle biopsy incision, you know, where ILLFRMT (It Looks Like Frankenstein Ravaged My Thigh), is actually a 4” x 4” pool of blood, not fluid, with no abscess and no inflammation.  We are hopeful that the blood will just be absorbed within a few months.  It was good news, but still, HAFATS (Hematomas Are Fugly And They Suck)!

Yesterday began with a 5am wake up call, then a 75-minute sunrise drive to City of Hope.  I started at the lab with AFBT (Another F-ing Blood Test), then moved on to my second bone marrow biopsy.  My first biopsy was ordered 2 months ago when my platelets were very low, but now that the red and white cells are also almost non-existent, my docs need to see what the hell is going on in there.  (All three components of blood are made in the marrow.)  I made it absolutely clear that I wanted to be sedated for the procedure, which otherwise is a wicked bitch – 2 holes are drilled into your hip bone and marrow is drawn out.  I met my new bff (anesthesiologist), and he told me that my knock out drug was going to be Propofol, yes the same Propofol that was Michael Jackson’s undoing.  He assured me that I would wake up, because I was being closely monitored, unlike the King of Prop, I mean Pop.  I was prepped, hooked up to an IV, heart monitors, bp cuff, pulse monitor and oxygen, then I was flipped over pancake-style with hip bones exposed and marked.  The next thing I knew I had bright pink juice, bone marrow and a piece of bone in tubes next to me and 2 holes in my back side to show for it.  Todd quickly whipped out a Cliff bar and some water so I could take down my morning pile of pills.  After an hour in recovery, I was told I could go, in other words, Beat It 🙂  I moon walked out of the room and down the hall to my appointment with Dr. P (hematologist/cell transplantation) and Dr. F (hematologist/department head).  I ignored the nurses calling after me that I needed to be in a wheel chair.

Our meeting with Dr. P and Dr. F went very well.  My morning blood test revealed that my white count was up quite dramatically, which was very encouraging.  We will learn more after tomorrow’s blood test which precedes my 14th platelet transfusion (it just wouldn’t be the weekend without pumping strangers’ blood into my veins), and then even more on Monday after we receive the bone marrow biopsy results and I have yet AFBT (Another F-ing Blood Test).

We were feeling very HOPEful after our morning at City of Hope!  We grabbed a couple of La Paloma burritos and hit the 210 east.  As the local anesthesia began to wear off, and the biopsy pain started to settle into my hip, the pollo y frijoles wrapped in that heavenly homemade tortilla became my entire world.

Because INPEP (I’m Not Popping Enough Pills), my docs have prescribed a new thick liquid med called Mepron that will keep me from getting a dangerous pneumonia that often attacks immune-deficient patients.  It looks, smells and tastes exactly like neon yellow high gloss lacquer – just thought you’d want to know.

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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,, 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).

28 thoughts on “Marrow, Moon Walking and Mid-day Mexi Magic

  1. Keep on Trucking, Jos. You are a winner and will find a way to beat this thing! Prayers for you everyday. Love you all, Cookie and Pete


  2. Wow, unbelievable. Your unending positive attitude is so inspiring. It is great that there is some encouraging news! We have been compiling the checks form the Calcutta for Global Grins and Dick will send you guys an update next week. It is very exciting!!! Xoxo and we will continue to pray as always! The Millers


  3. Dear Jos, What a day. Hoping for great results. Know that I am not surprised by your atitude as we first met when Todd introduced us well before Micaela and Rex were born and your spunk shown through way back then. I told Todd you were a keeper then and that applies to adversity as well as the joys of life so here’s to Jos, our friend and our rock. Give ’em hell!


  4. OMG! You are cracking me up. I’m crying with laughter as I read your update. After your ordeal you should publish your account. Keeping your humor and the energy to keep being so witty is inspiring. I hope you have a nice and restful weekend. Love ya -Sharona

    Sent from my iPhone


  5. I just love you!! Your blog needs to be public with others that are going through what your going through. When my mom was sick 9 years ago I would read blogs all day from patieDnts that had the same thing. Your blog needs to be on the top of the list!!! Please call when you need an extra hand, blood, Mexican food or red bulls!!! Xoxo


  6. Joselyn, I never had a more interesting “book” to read, I cry and laugh, feel pain and relief, I am happy for all the good results and pray for even better news. Hope, you get some rest this weekend!
    Rita N.


  7. David and I are reading your blog at a little hide-away called The Orchid. Happy to read you were moonwalking with hope…love and hope your hips are feeling better…argh…


  8. Jos, this story sounds more like “Thriller” than “Beat It”, and it better have a happy ending! Glad to hear your white cells are up & I’ll be praying your biopsy results are
    great. Hang in there and keep on moonwalking!


  9. Joselyn,
    Mickie has tuned me in to what you have been going through. I can now follow your progress and I’m so happy to hear things are improving. We will continue our prayers for your total recovery. Love, JoAnn and Dick Mattingley


  10. Dearest Joselyn……Please hold off on jacking up your car in the front yard…..champagne is on it’s way!!!
    Love and Prayers……your neighbors on the 500 block


  11. Thank God your ordeal of having another bone marrow biopsy is over. Finally, it looks like things are taking a positive turn. Will pray extra hard for your results on Monday. Hope you are having a quiet, relaxing weekend. God knows, you need it!


  12. Hi Joselyn – your are a true inspiration – I have been thinking about you and sending positive energy – keep up the amazing spirit – you will beat this thing!
    Love mary


  13. Jos, you just made Sara and I laugh pretty hard. Your positivity is contangious. We are thinking and praying for you everyday. Keep up the good work! We can’t wait for you to beat this thing!!

    Nick and Sara Clement


  14. Sounds like some positive news for you Joselyn, so great. That marrow test does not sound like fun, thank goodness a good burritio was nearby when you needed it. Drink that yellow lacquer and keep fighting.. and moon walking too. “King of Prop”.. priceless!


  15. Burritos and Bone Marrow! Let’s substitue the Bone Marrow, for Beach…hope you’re back to it soon! Hang in there Jos! You’re conquering this mountain!


  16. I signed up with – waiting for my test kit. Hope all the red wine I’ve consumed during my life is a positive towards acceptance ! 🙂


  17. Wow! How do you keep such a great attitude!!!! You are really being tested and we are praying that you get an “A” on the final. I am sure your blog is therapeutic for you to write, but it also keeps the people that love you updated. I think you get your bone marrow results back today and all I can say is “please God let them be good news”. We love you Joselyn!


  18. Hi Joselyn …

    Jeff and I have been following your progress via friends and neighbors… just not a big enough word to describe you… We have always been beyond impressed by your talent in the arts and design, your embrace of this beautiful planet, your generous heart…And WOW….though we always looked forward to receiving your funny, creative Christmas greetings, it turns out you are master with words.

    Be it through laughter or tears..thank you for sharing your journey. I really do wish there was a way we could spread the pain and the PITBM (pain in the butt moments) around…I am sure if all of your friends and family could sign up to share in just a bit…there would be a waiting list..

    Know you are in our prayers…

    Diane Morris


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