Collapsing Cell Counts, Increased Injections and Frivolous Footnotes

I’m the luckiest person in the world because my army of supportive family and friends is THE BEST medicine!

Online shopping is the second best medicine.

Blasting Tom Petty and Donavon Frankenreiter is the third best medicine.

It’s a love/hate relationship with platelets, red blood cells and white blood cells.

Trojan football is going to f-ing kick ass this season!

Shaving a numb leg is extremely dangerous business because IHNFP. (I Have No F-ing Platelets)

Nurses are super duper awesome.

80% of the bills in my pile are from doctors, labs, hospitals and medical facilities.  One recent check I wrote for “my portion, after insurance” was for 69 cents.  “Oh, don’t worry, this cotton ball’s on me!”

NSHLAMFAANFP – (Neupogen Shots Hurt Like A Mo Fo And Are Not For Pussies)

I have made 101 trips up and down Pacific Coast Highway for appointments in the past 14 weeks.

A “normal” person has a platelet count between 150,000 – 440,000.  I’ve been down to 9,000.  Confirms a lot about my “normalcy” or lack thereof.

The skin on the upper side of the forearm (IV) is WAY tougher to put a needle through than the skin on the inner elbow (AFBT- Another F-ing Blood Test).

HAFATS – (Hematomas Are Fugly And They Suck)

Dear Trader Joe’s Carrot Juice, please stop tasting so divine, otherwise I may need to enter rehab when this is all over.  Yours truly, Joselyn

When I wake up each night at 3am – BIOTP (Blame It On The Prednisone) – I either play Scramble with Friends (Mary and/or Gianca) or I watch Project Runway.

Platelets look like butterscotch pudding.  No taste test arranged yet.

I haven’t worn jewelry or been inside a market, restaurant, shop, etc. in 8 weeks. Being the Girl in the Plastic Bubble is not all that bad.

I miss the Olympics!

After 96 pokes, my needle phobia is starting to subside.  Still terrified of snakes, and not planning to hang out with 96 (or 1) of them to cure me of that phobia.

I have NOTHING to complain about, compared to many of my superhero friends who have fought MUCH tougher battles than mine.

There is a clinical trial underway testing the effectiveness of microscopic whipworm parasite eggs, culled from pig feces, suspended in a tablespoon of saline solution, which have shown promise in preventing a patient’s immune system from attacking the body’s own tissues and organs.  Maybe this is my next miracle drug 🙂  Sounds yummy!

Anyone know where you can hire a stunt double to stand in for medical appointments?

A platelet walks into a bar…

I often feel something dripping down the back of my knee, but there is nothing there, just numb flesh thanks to a nerve being hit during my muscle biopsy.

90 days ago, I had no idea what these meant.  Now, my health depends on them!

HGB – Hemoglobin (red blood cells)

WBC – White blood cells

GRAN – Granulocytes (part of white blood cells, including eosinophils)

PLT – Platelets (allows for clotting in the blood)

My visit with Dr. A (oncologist/hematologist) on Friday included a Neupogen shot and AFBT (Another F-ing Blood Test) – surprise surprise!  Because of my sliding white cell count, he decided to increase my Neupogen injections to every day to try to jump start my bone marrow into producing more white cells.  Being that it was Friday, this meant trips to Hoag Hospital’s Cancer Center for Neupogen and blood tests on both Saturday and Sunday.  Joy!   Saturday’s numbers included the biggest drop yet (more than 50%) in platelets 2 days after a transfusion and dropping white cells and dropping red cells.  I had platelet transfusion #10 right then and there.  Sunday’s numbers weren’t too hot either, so we think there is another blood transfusion coming soon.   We now have all the nurses involved in guessing my blood count numbers.  They finally asked what the prize was if they guessed the right number, and they are not as enthused now that they learned the prize is a blood transfusion.  We laugh A LOT when we’re at Hoag 🙂

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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).

28 thoughts on “Collapsing Cell Counts, Increased Injections and Frivolous Footnotes

  1. You are in the “zone’…Mr. Madsen could help you here…Maybe I can call John Travolta and he can give you some hints on how you can have fun in a Plastic Bubble!

    Keep that brain sharp!

    Lots of love and laughter from the Colorado Rocky Mountains!

    Laura

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  2. You are such an inspiration to us all Joselyn. I pray very day that you will have your “normal” life back soon.

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  3. We just arrived home from moving Bug into BC and read all of you blog!!! Holy crap woman!!! It appears to us this little bug has picked on the wrong person! We are amazed at your attitude. We love and miss you guys a lot! Keep up you strong fight. We are thinking of you everyday. We know you have a fantastic support group up there, but yell if need anything from you San Diego pals.
    The Hanleys

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  4. Seriously J, you are unbelievable! I know this is not a laughing matter, but you are keeping me in stitches. You are the most clever person I have ever met, (don’t let Gary know I said that – he thinks, that I think, that he is!) You go girl! Keep up the good spirits! You know you have an army of friends and family praying for you!

    love ya,
    Nancy

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  5. Hang in there and let all who are willing help in any way possible. I have great veins and need money 🙂 let me know know if there’s a position available on your team…
    Love love

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  6. OMG Jos! I cannot believe what you have been thru and still able to keep your great sense of humor. You know they say laughter is the best medicine, or is it microscopic whipworm parasite eggs? I’m sure we learned about HGB’s, WBC’s & PLT’s in Bio 10? Maybe we should have paid more attention? Still praying for your full recovery!

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  7. Get better fast…I want to take you on the road…you could entertain at hospitals worldwide…ok, if that doesnt sound appealing, how about villages in Fiji?! Do you sing and dance too?!? Your humor might go over the Fijians heads…but your fun loving spirit would fit in beautifully! do you like kava?! Xoxo

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  8. Dear Joselyn & Todd,

    Most of us would someday hope to enjoy meeting a GREAT person such as a United States President or famous war hero, etc. It is hard to image that in just our family, we enjoy having not one but two “GREAT people” in Joselyn and Todd.
    This is made perfectly clear when you read JOSELYN’S REPORT and all the comments from all their friends contained therein.

    In addition to being “GREAT”, you are lovable, humble and strong. As you know

    Joan is in overdrive with her prayers.

    Love,
    Papa

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  9. Hi Jos,

    I have always been so very proud of your many recent accomplishments!!

    1. Iron Man Competition
    2. Certified Scuba Driver
    3. FID Graduate
    4. Summiting Kilimanjaro
    5. Founding Global Grins Charity

    I think “Team Miller” is awesome and that you and Todd are so well suited in every way.

    We are looking forward to adding many more to this tremendous list including victory over EO.

    Our love to you,

    Jojo

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  10. What grace under pressure you have, Jos! You’re phenomenal. Your spirit, inspirational. Love your humor. When you can laugh in the face of adversity, you have conquered. God Speed His health to you.

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  11. We are praying like crazy for your QUICK recovery! Your blogs are amazing…so witty and humorous, thank you for keeping us up to date with what and how you are doing. O+ blood here if you need it! We feel so helpless- wish we could make this all go away for you. Lots of love and Big hugs too from the Longfellow Family xo

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  12. Blue skies are ahead. In light of your devotion to the Trojans, I hereby declare and predict a wire to wire finish on top. You have my full support Jos even if it means rooting for Tommy on the 15th ( of course after Barkley is pulled to rest). Keep writing in your blog if you are able. It makes us all focus on your fight. Fight on !!!!!

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  13. Joselyn, it is absolutely pure 100% s**t! In case you are feeling as I did, that my life would always be focused on the next dr. appointment or ouchie treatment, it won’t. I shoved all those “visits” into a mental box and put it away when I could. We are all sending you strong, healing energy. I’m A positive, if you want it. Fight On!

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  14. Hey Jos…..I can’t believe all you have been through and are continuing to go through! I thought about just writing all the swear words I could think of in a row but they weren’t enough to make the point. Shit! Your attitude is amazing!!! Julienne and I are praying for you daily and we are following your blog (thanks for it).

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  15. Joselyn, your positive attitude with all you are going through is inspirational, as if you weren’t already with all the amazing things you do for your family, friends, and others. I am so glad to read the updates – I speak to your parents often, but it is great to know first hand from you how things are going. I am wishing, hoping and praying the best for you.

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  16. What can I say that hasn’t already been said? You are more than awesome and I am so glad you have an awesome family, too. Your blog is so informative plus you get an A++ for wit and humor. Fight On!

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  17. Joselyn,
    You are incredible !..Amazing wife, mother, daughter, friend and sister in law.I feel your strength and courage…Your attitude if off the chart “What a woman” I am here
    for you and Todd dropping by Lucy’s on Thursday..Hang in there most incredible awesome wonderful woman that you are..Sending you love and healing.
    I love you,
    Jennifer xo

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  18. Jos,
    I am so sorry to hear about the health battle you are waging! Keep up the fight, girl — you will be in my daily prayers. Your ability to still share your incredible sense of humor and strength is inspiring. love to you, Tara

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  19. Jos,
    John just showed me how to look at your blog. What you are going through is so odd and weird. I get to see your wonderful funny side in the middle of this miserable health fight. Fight On! Oh that might be a good tag line for a SC song.
    Duh!!!! Peggy

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  20. Joe,
    Thinking of you and the Fam a lot. Keep the faith and the positive attitude. I’ll be sending you lots of prayers and positive vibes. The Miller family is the best. Let me know if you need anything at all. When you get better, frozen dinners on us.
    Love ya,
    Craig Crawley

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  21. Hi Jos,
    So it seems to me that this has gone on long enough and if it seems that way to me I can only imagine your view! That said, I remember a quote by Don Quixote and I pray that this is true for you.
    “For neither good nor evil can last for ever; and so it follows that as evil has lasted a long time, good must now be close at hand.”
    ― Miguel de Cervantes Saavedra, Don Quixote
    Smile in the face of adversity and it will cower in the face of your courage.
    Lindon

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