The Eyes Have It

 Have you ever tried to see through Vaseline?  I have 🙂  My eyes have been taken hostage by Graft vs. Host Disease and in addition to that, TDVPHCCIBP – The Dreaded ‘Vitamin P’ (Prednisone) Has Caused Cataracts In Both Peepers.  My newest team member, Dr. S3 diagnosed me with multiple cataracts and told me that I need to have separate surgeries on each eye.  They will go something like this:  a small incision will be made on the side of my eyeball, then an ultrasound will be inserted, which will pulverize the lens, then vacuum out the pieces, leaving enough space to implant an artificial lens.  I’ll be awake during the surgery.  My right eye will be operated on first, followed by 8 weeks of sitting on the couch downing Haagen Dazs mocha almond fudge, then it will be the left’s turn, followed by another 8 weeks of slothing and gorging.  My vision absolutely SUCKS right now, so I’m looking forward to these procedures!   In addition to seeing the world through what appears to be petroleum jelly, I’m very sensitive to light so I often make like a mole and dive into the nearest hole in the ground.  Objects or people in front of a light source appear in silhouette (completely black).   No boo hoos here!  There is a massive silver lining!  I’ll get to play pirate for a while, and the surgeries will be AWESOME, because I will be able to get my vision prescription put into the new lenses (for distance AND reading).  The plan is that I won’t need glasses, contacts or a white cane 🙂 Jealous much?  I know, I know – sorry to rub it in!

So now, even if my chemo brain could remember your name, it doesn’t matter, because I can’t see a face in order to recognize you.  The epitome of sub-par social etiquette.

Dr. F has referred me to a second ophthalmologist, due to the fact that I have GvH in the eyes in addition to cataracts.  Dr. I has lots of experience with patients who have had similar health experiences as me and he will have the final say on when and where I have my surgeries, as well as who’s holding the cutlery.  And, hot off the press:  I am starting to taper one of my meds!  Yay!  I’m dropping 2mgs of Tacrolimus (Prograf) from the daily lineup.  Pass it on.

1512759_10152035765823463_1215177621_n
Dr. F making his way down Colorado Blvd.
1506590_10152035763818463_1835011403_n
Dr. F and his patient, Ben

So…  This is super cool:  City of Hope’s 2014 Rose Parade float featured none other than Dr. F 🙂  Show of hands:  who saw him waving to the world in his Dodger cap?  He was riding next to a great guy who underwent a stem cell transplant, which finally cured him after 3 rounds of cancer.  Through COH, he was able to meet his lifesaving donor just before the parade began!  His story:  http://breakthroughs.cityofhope.org/rose-parade-float-ridersben-teller-dream/10733/  This year’s float was beautiful, complete with wish trees, adorned with individual wishes of patients, friends and family, just like those outside City of Hope.  One of those wishes was mine 🙂

DSC_5136
Our gang of Spring ’84 shipmates with our dean, Lloyd!
DSC_4893
Todd and yours truly – shipmates once again
DSC_4938
Leason (Spring ’88) and me (Spring ’83, ’84)
DSC_5025
Lovely Valerie gave me this sweet jacket
1505059_10101025613778807_1810077241_n
Jackson 5
1016272_10101025614597167_467087844_n
Japanese ninja, jailbird, jesuit, Ja’mie, 2 Jacksons
1505030_10101025614746867_1760128750_n
One of the Jacksons, jogger, Ja’mie

Last week I was able to step foot into my first foreign country since these creepy diseases crept up on me.  I attended my Semester at Sea 30-Year Reunion Voyage from San Diego to Ensenada, Mexico.  But it wasn’t really about the port visit.  It was about our group of 40 shipmates getting back together again after 3 decades.  I met my husband, Todd, on the Spring ’84 around-the-world voyage, and we were so happy to be able to join our pals for a very FUN four days.  The new ship offered no classes, no lockers for closets, no losing an hour every other day, no soot on our clothing, and no cabin stewards with a fetish for short-sheeting their cabin residents.  My brother/hero/donor, Leason is a SAS alum, from the Spring ’88 voyage, and I am so grateful that he was able to make the voyage even more special and meaningful!  Our awesome reunion chair, Val, presented me with an incredible jacket, with a ‘J’ on front and ‘Courage’ embroidered on the back!  A group from the Spring ’09 voyage (which Todd and I joined for a few weeks from Morocco to Namibia to South Africa) decided to dedicate a dress-up night to my recovery (I know – so f-ing amaze balls) where everyone dressed up in a costume that started with the letter ‘J’.  These crayzeee individuals came as the Jackson 5!  There was a jailbird, a Jesuit, Jared the Jeweler, Jameson Whiskey, some Japanese ninjas, a Jew in a jacket, Jesus, J Lo, and many more!  I came as Ja’mie, the self-proclaimed hawt and insanely popular Aussie high schooler from the hit HBO show, Summer Heights High.  As soon as the bar was packed with shipmates, and the drinks were flowing, Leason  ‘jogged’ up, donning a neon singlet, micro running shorts (borrowed from his wife, Kesha), a headband, wrist bands, and neon Asics.  Classic costume!  Those sought after ‘J’ tats made a showing on the voyage as well.  My eyes were acting up during the fab four days, but it was a GREAT time!  What could be better than being surrounded by ‘J’s, my second favorite letter?  🙂

—————————————————————————————————————————————————-

Suppose someone told you that a woman had these symptoms:

cataracts

wtf hairdo

painful joints

runny eyes

no short-term memory

violently shakes when chilled

bags under her eyes

owns a cane

downs a sh*t ton of pills daily

feels the need to nap every afternoon

throws in profanity at inappropriate times

cannot make it through the night without a trip to the loo

no night driving allowed

pays the price for eating spicy foods

FUSUOLS – f-ed up super ugly old lady skin

no flexibility

uses ‘sensitive’ toothpaste

probably legally blind

weak muscles

and

gets sh*t faced after one cocktail

How old would you say that woman was….  91, 97, 104?  HA!

————————————————————————————————————————————

IMG_0020
Told you!

Once again, my friend, Karen sent me an outrageously awesome t-shirt.  This one is mucking afazing!  LOVE it!

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).

36 thoughts on “The Eyes Have It

  1. OMG Jos. With all of this on top of all of that – and your attitude remains so kick ass positive – you are a miracle. The heart of a lion and a personality to match. We are happy to see you are getting out and having fun with old friends and fellow shipmates. Get your eyes fixed so you can see all the beautiful places you are headed toward when you resume your travels. Love Lynn and Carolee

    Like

  2. Your attitude is F___ Amazing!!! I shake my head in disbelief and admiration as you continue on your journey to health and healing. Knowing you, you will have the most fun and outrageously colorful sunglasses known to man!!
    So many more adventures await you, dear Joselyn … and we will all benefit from living, and learning, vicariously through you!!!

    Like

  3. Jos! You are the epitome of positivity and light. All of these surgeries, pills, & your incredible brother have been a great help to get you on your road to recovery. All those factors along with your amazing attitude is what ultimately heals you! I am so happy to call you my friend.

    Like

  4. It boggles my mind to read the extensiveness of what you are living with every day — especially when you looked so great on our reunion and have such an amazing attitude. I hope the eye surgeries go great and you continue to kick this crazy disease’s butt!

    Like

  5. Hi Jos….Just read your blog and we are so sorry about what you are going through. You are (as always) so positive. We wish you luck with your surgeries and will be thinking of you. You are an inspiration for all of us, Jos. We love you.

    Love, Uncle John and Aunt Went

    Like

  6. Hi Jos, I can’t believe all that you have gone through with your sickness. You are the most inspirational person that I have ever known. You must write a book and go on a speaking tour to give hope and inspiration to those who have not been privileged to read your blogs. You write beautifully and I love your blogs. Good luck with your eye surgery and keep that wonderful spirit up. I am praying for your quick and full recovery. Love, Bonnie (Wendy’s sister)
    Also, FIGHT ON! We are all Trojans here.

    Like

  7. Hi Jos,

    I hate hearing you are having more side effects but I am happy you are having fun in life and with the blog. Good reading if I want to feel good and have your spirits lifted. We should design you a book! We all now know you are tougher than most men, verified and in the books. With Love, C. Luke

    Like

  8. Jos,

    Amazing blog as usual! The pictures are so fun and you look fabulous. It was so exciting to hear about your SAS trip! I can’t believe you are going to have eye surgery and that the Graft vs. Host is in your eyes, now. You are so courageous and we will be praying for a successful surgery. You are constantly in our thoughts. We love you!

    Dick and Gretchen

    Gretchen Miller
    Leasing/Investments
    Transtar Commercial Real Estate Services
    2101 East Coast Highway #101
    Corona Del Mar, CA 92625
    949-813-6122 cell
    949-760-4013 work
    Fax: 888-717-2563
    gmiller@transtar.com
    DRE# 01071427

    Like

  9. Wow Joselyn! Keep that positive attitude going. We’re all praying for you to have super vision and get travelling again. So fun to see you and Todd at the SAS ’84 reunion! Todd was a top notch beach boss getting the beer and kayaks and having volleyball fun.

    Like

  10. You are soo cool, inspiring, and amaze balls! I love the map dress. Is that one of your creations? The pictures were beautiful of you by the way!! You are in our prayers.
    xo Marilyn

    Like

    1. Marilyn – Thanks for everything! I hope all of the Christians are rocking! Yes, I made the dress especially for the SAS Reunion 🙂 I saw the fabric a few days before the cruise and I had to buy it!

      Like

  11. Jos – You’re a tough fighter and a fabulous person! Yours is an example of how to live an amazing life amongst some pretty crappy circumstances. Congrats on the reunion voyage.
    Xo, Nettie

    Like

  12. Joselyn, Wilfried had this eye surgery last year, first one eye, 3weeks later the other eye. Everything went really well, he just needed a lot of eye drops, but he can see so well and doesn’t need any glasses anymore. He is very happy he did it!!!
    All the best!
    Rita

    Like

  13. Your strength is Herculean! The way you deal with all of this shiesse with humor and grace is amazing. You are one tough cookie. Always in my thoughts and prayers. ♡♡♡

    Like

  14. Jos and Toady:

    What a great e mail! I am going to send it on the Brian and Milly so they can read what their beloved eldest cousin is doing and bravely putting up with!!

    Your report takes my breath away, Sweetheart… still nip and tuck with graft vs: host and eyes/body that need taken care of .

    Still things are a bit better and you were able to go on the cruise ship once again together. I know you will be coming up here for wedding next weekend?? January 31st and I hope we can, at least, have tea together…. You will be at the Olympic Club…. my favorite place in the world.

    Auntie Char

    I will be coming down on March 13 and hope I can see you both. I am coming ….. to celebrate Pow Wow and 60 years since our class graduated FUHS in 1954.

    Date: Fri, 17 Jan 2014 17:32:29 +0000 To: charlotte_mayfield@hotmail.com

    Like

  15. Jos,
    I am in awe of your strength, determination and positive will! Seeing you tonight reminded me of your true beauty! Although you have been tested at every turn you continue to show all of us how lucky we are to have you as a role model and again, a MODEL you are or should be! I can only imagine with all the F’d up events, you may not feel as beautiful as we all see, but honestly, your sense of style, your new hair do (do blondes really have more fun?) and your genuine smile always warms my heart. God Bless and know you are in my prayers for a continued journey to good health.
    Love and admiration
    Mj

    Like

Comment (pretty please!)

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s