What Cide Effectz?

So, I’m staring at this ever-growing mass of pill bottles and ever-expanding list of procedures, and I’m starting to wonder about all of the combined potential side effects I may have the pleasure of experiencing due to all this sh*t I’m exposing my body to.  Don’t be alarmed, I won’t list all 2,361 here, just the most interesting/alarming ones:

Prednisone:  Bleeding of stomach – (yes), Extreme sense of well being (not so much), Complete stoppage of heart – (holy sh*t!), Hives, Delirium, Hallucination, Paranoia – (My heart is going to completely stop!  When is my heart going to completely stop?), Acne – (yes), Confusion – (not sure what they mean by this), Impaired wound healing – (yes), Feel like throwing up, Hiccups, Excessive hairiness – (actually, Ringling Bros. called and they said if this professional patient thing doesn’t work out, I could go on the road with them)

Cyclosporine:  Lymphoma – (narrowly escaped that one), Confusion – (wait, what?), Vomit that looks like coffee grounds – (can’t wait for this), Loss of consciousness, Night sweats, Swollen gums, tongue or throat, Nausea, Tremor, Acne – (again, yes)

Solumedrol:  Seizures, Slow wound healing – (yes), Dizziness, Vomiting – (just plain old fashioned vomiting I assume), Personality changes, Unusual bruising – (yes)

IVIG:  Stroke, Heart attack, Kidney failure, Meningitis, Encephalitis – (any of these would really throw a wrench in my healing plans)

Neupogen:  Hair loss – (yes, I’m resembling Mr. Magoo more and more each day), Eye swelling, Bone pain, Nosebleeds, Bloody vomit – (these vomit side effects are pretty colorful), Easy bruising – (yes), Spleen rupture – (sounds like a blast!)

Amitriptyline:  Rash, Hives, Nausea, Trouble sleeping – (huh?  This is a SLEEPING pill!), Delusions (What was that?), Hallucinations (Did you see that?), Panic attacks (OMG, what WAS that?), Exaggerated feeling of well being, Yellowing of eyes (only when I can’t get the IV pump to unplug in a timely manner, so I can take it with me down the Hoag hallway to the little girls’ room)

Omeprazole:  Seizures, Choking feeling, Jerking muscle movements, Hives, Swelling of lips, tongue or throat, White patches inside mouth

Open Muscle Biopsy:  Bleeding (yes), Bruising (yes), Nerve damage (yes), Hematoma (yes)  Looks like I get an A+ on this one!

Blood Transfusion:  HIV infection, Hepatitis infection – (both get my attention)

With all of these possibilities, I’m amazed:  1.  None of my organs have exploded.  2.  No men sporting white coats have come to take me away.  3.  Not one mention of my radical increase in swearing like a f-ing sailor.

It seems all of my docs and nurses have input on my diet.  I’ve been told by various members of my team to avoid:

all wheat products

all dairy products

all soy products

all red meat

all citrus

all alcohol

all caffeine

all nuts

all spicy foods

all unpeeled fruits

all lettuces and sprouts

all uncooked, unpeeled veggies

all acidic foods

all salty foods

WT(EF) am I supposed to eat?  Being that I am on a very tight pill-popping schedule, I am forced to eat at specific times of day with no snacks in between meals.  I lied.  (Must be those Amitriptyline delusions setting in.)  I get snacks.  My snacks consist of gallons of water – mandatory for keeping my veins nice and hydrated for the constant pokes.  Needles, I mean needless to say, my meals are VERY important to me.    My secret weapon is my personal master chef, Todd, who last night prepared a sumptuous red sauce with lobster, served over a delicious asparagus risotto with a wonderful, delicately seasoned pea soup starter.  I’m serious.

Today’s field trips included an early morning meeting with Dr. A (oncologist/hematologist) for AFBT (Another F-ing Blood Test), which was not very encouraging on all battle fronts:  white cells, red cells and platelets– we’re hoping the new drugs just haven’t had enough time to show improvement yet.  I also had my second Neupogen injection, which, frankly, stings a little more than I would like.  From there, I visited Dr. S2 (surgeon) to see about my wound swelling.  I have a sizeable hematoma under my incision now, which my docs want to just let go away on its own rather than try to aspirate or drain it at this point.  With the meds I am on, combined with the low blood counts, an infection would be likely, disastrous and not worth the risk.  I was thrilled to learn that I have dodged an additional procedure – for now.  The tour ended at my HAFH (Hoag Away From Home) for platelet transfusion #9.  I took in a larger amount than usual, which hopefully will last a little longer than the previous 8.  I received a call from Dr. M2 (gastroenterologist), confirming that the results from my recent 6 biopsies of my esophagus and stomach came back without cancer or bacteria.  Yay!  Some good news!

 

My 1″ high thigh hematoma – notice FUSUOLS (F-ed Up Super Ugly Old Lady Skin)

Arriving for platelet transfusion #9, not to be confused with the famous love potion

Posted by

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).

30 thoughts on “What Cide Effectz?

  1. Guess what?! Good news!! Your thigh WITH hematoma still looks ROCKING WAAAAAY better than mine ever has WITHOUT hematoma. Yay!!! And… don’t hate you because of your beauty! In fact, sending much love, hugs and here if you need anything including my O- blood!! Hang in there!!!! I’m so so sooooo sorry you have to go through this. You will be ok. Love love love! Lmk if you need ANYTHING! Xoxoxox

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  2. Ok, how are you still sooooooooo cute, beautiful, stylish, funny, bubbly, darling, rockin’-hot momma?!?! Just read your latest…I am laughing & crying with you at the same time! Wow…Jos, you do go big!!!! You amaze me!!!! Kisses from Cooper’s

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  3. I would be laughing at your hysterical comments if I wasn’t crying inside. Hang in there. You are an amazing woman!

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  4. Joselyn- you are amazing! Good thoughts and prayers for your quick and complete recovery, wisdom to your docters and love and peace to you and your family. You are a hero! XO

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  5. Anytime Todd needs help with driving and picking up Im here!!!we live on lido very close to hoag if you need a place to come in between doctors!!! Xoxo

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  6. Jos, you have an amazing story. I feel like anything I say is not enough, empty and silly. There is so much beauty in pain, so much to learn. It can cause you dig deep to see what you are made of and what those around you are made of. Todd is my new hero for his kindness toward you, and you, the every sweet and smart gal who has dreams to dream and adventures to live. May God bless your efforts! A merry heart is good medicine. XOXO

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  7. Sending good vibes, support and love throughout this journey. Please shout out if there is ANY thing that I/we can do to help in any way… I am very available for Drs visits on down to picking up fast food or a home cooked meal, errands whatever. I would seriously love to be of any help.
    Love and good health are in their way.. You are in our thoughts 💙Ann and Jay Thornton

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  8. Lobster risotto? Lucky. My kids had Mac and cheese out of a box. Tried to make it gourmet with tuna and provolone… They hated it. Like the blog Jos. Keep those posts coming and your chin up! – Cousin Brian

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  9. OK………. you are the funniest person I have ever met! You will be able to write a best seller with all of your blogs. You are an inspiration to all of us. We love you and keep up the PMA (positive mental attitude)! When you are all better I hope you keep up a blog. You put a smile on my face every morning. We all hope that our thoughts, prayers and words do the same for you!!!

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  10. Jos, I knew that you were dealing with a lot, but I really had no clue just how much you were dealing with until I just read everyone of your Blog’s. Without a doubt the way in which you are handling this is truly amazing, I love your strength and courage, Fight On! My prayers are with you and your family, keep the faith Oh Strong One!!!

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  11. Tee hee hee… I love your Bombeck style sense of humor! You really have a knack for it. Thank you for showing all of us that attitude is everything. You’ll get better, I know you’ll get better and when you do, I’m with Nancy, I hope you continue blogging! You brighten the day my friend!!! xo

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  12. Joselyn, Sweetheart , Toady, Myc and Rex, esw!!
    What you report in this recent chapter of your adventurous experiences sound like the doctors have apparently forgotten about Schulman’s
    and are trying to give you something else!!
    Steady Jos….and please let a health magazine… print your e mail..as I am sure, many people who are going through this and would enjoy how you describe everything as I did!
    Eventually, your health will be restored and you will certainly do good for your fellow patients. Seek some medical journal (?) to accept your story.
    Jos, I have been praying very hard for you and have questioned God why you are suffering so much…. Do the same and believe me, it helps.
    Uncle Bill has been dead 9 years and we all are still suffering so much carrying the burden and disbelief.
    I will never forget your coming to the funeral and
    were in tears… Thank you so much for sharing that with us. ..
    Toady, the menu for last nights dinner of Lobster sounds ummmm good with pea soup to begin. you diden’t mention wine???
    Jos, are you working on designs for men’s shirts and collars and tie desighs?? This would be a good time to think about your idea…. get your paints out and design away.
    I love you so much,
    love,
    Auntie Char.

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  13. Your EPFC (Excessively Positive Fan Club) AKA Team Brandt stands firmly behind you (or firmly on your behind, not sure which). Think of this as an “episode” which you will undoubtedly pass through. We are sending you positive energy (can you hear it?) You are never far from out thoughts. Hugs to you all. S3 (Steve, Susie, Steffi).

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  14. Hi Jos…Our whole family is rooting and praying for you…the day Uncle Butch cooks for me all hell will freeze over…the dinner sounded wonderful…what a guy!!!

    Lots of love,
    Auntie Caryll

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  15. Jos,

    You are unbelievable! We love the updates and miss you. We pray all the time! Xoxo Gretchen and Dick

    I

    Sent from my iPhone

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  16. Thank you for keeping us aware of all the miserable stuff you have to go through. My goodness how well you are dealing with it! You set the gold standard for any of us who fall ill. Keeping you in positive light and hoping you will beat this soon.
    xo DD

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  17. Hi Jos…how about I teach you to swear in Italian? will that help? Let me know…happy to share…….

    Much love

    Silvia Marjoram

    P.S. ……will be at the house on Sunday….6000 toothbrushes for Operation School Bell kids…. WOW thanks and 600000000000 smiles back to you :).

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  18. Hey Jos, thanks for creating such a clever method to share your miserable experience with the rest of us. I never realized you were such a gifted writer… To be added to your many other talents. Thinking of you often and selfishly praying for your speedy recover. Nothing but Love, -Chad

    Oh, and kick the F*@king sh*t out of Shulman’s. (From sailor to sailor :-).

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  19. Swearing like a F-ing Sailor…or a Truck Driver…Normal side effects! And, kind of fun! Going through a heart transplant with my Dad…Amazing. I have been going through some of the same kind of hell as you…sucks. But, with a little humor and lots of love you can make it through. You have inspired me to keep writing my book. On bookshelves soon. Keep your family close and the laughter in your heart!

    Much love and hugs!

    Lausoi Mad Mad…

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  20. Oh, Jos, I’m so sorry to hear this news. Todd emailed me. My prayers are with you. If there is anything I can do, please let me know.

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  21. Hi Jocelyn:I have been thinking about you so much lately. We are praying for you and a speedy treatment. Stay strong and humerous. Laughter IS the best medicine and we are here for you if you need anything. xo Susan

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  22. JOS AND THE CHEF…I am O Positive if you need platelets!
    You have our constant love and prayers…..Todd give us a shout if you need assistant chefs! Can’t wait when you can look back at this experience and give it a good A__ __ Kicking!!! Love, The Linkletters

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    1. Hey Joselyn, since it doen’t matter what blood type you are for platelets as one does not have to be a match. Unfortunatley I know this from experience since my dad had cancer and I could not give him blood, however my platlets were very useful. I am happy to give too. B positive that is me and that is what I try to keep in mind. Stay strong and if you need platelets I will be home in two weeks. Please put me on you list to reach out to for that. BTW…great idea Dana! Love and light Debbie D

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  23. Hi Joselyn, you are the cleverest most amazing woman I know right now and how you are finding humor in all in the hardest places is not easy but you will WIN in the end… and yes Dana you said it the best! Give the experience a good f#$@ kicking! Let Todd know we are here as backup as being useful makes us all feel part of our fabulous Jocelyn team. Stay strong and wonderful…so love reading your blogs. Love and light, Annette

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  24. Hi Joselyn, I wanted to let you know that I have been thinking of you. You are such a strong girl, I realize every day is a struggle, hang in there.
    xoxo Bridgette

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