On Second Thought

SECOND CHANCE

I’ve been thinking a lot lately about how lucky and blessed I am to have a second chance at life.  A do-over.  If I had been born a few decades earlier (before bone marrow transplants), I wouldn’t have seen my 50th birthday.  If my brother, Leason, had not been a match, I may not be alive.  If I didn’t have the world’s best caretaker, Todd, seeing to my every need, I may not be alive.  If I wasn’t fortunate enough to have been treated by the best doctors in the field, I may not be alive.  If I wasn’t fortunate enough to have been treated at the best facility (City of Hope), I may not be alive.  I don’t look or feel (mentally or physically) like I did before the big ship hit the iceberg, but I’m still afloat 🙂

“It’s okay that I may not be normal again, because I am again.”

Freshman Year
Fairly certain Captain & Tennille had me in mind when they were singing about muskrats.

Speaking of not looking like I used to, I frequently see people I know and they look right through me ~ not on purpose, they just don’t recognize me.  Obviously my hair is a clusterf*ck, and I haven’t been able to wear makeup for months.  It’s kinda fun to not give a sh*t 🙂  This is not the first time I’ve had a bad case of the fuglies!  I recently found some ancient photos in my parents’ garage, including this unfortunate example from my freshman year of high school.  Todd and Mychaela were viciously laughing their asses off when they glimpsed this slice of 1970’s horror.  They told me that I’d have to have huge balls to post it on Facebook, so I didn’t.

SECOND DNA

Chimera
You can call me Chimy!

I heard from some of the wonderful peeps at City of Hope say that I was now my brother/donor Leason’s twin, and I’ve enjoyed playing that up with the Tweedle Dee and Tweedle Dum thing, but I’ve never really understood what that meant, biologically.  That is, until I did a little research on the subject and found out that I am a chimera.  I know, that’s what I thought…  WTFIAC – What The F Is A Chimera?  I’ll tell you exactly what it is:  It’s a mythological beast made up of various parts of a lion, a goat and a dragon, with the tail of a snake.  How RADASS (rad + badass) is that?  It may be radass, but it’s another cruel reminder that I haven’t made much progress in the way of good looks since 9th grade.  Patients who have undergone a bone marrow transplant are called chimeras, because we have TWO SEPARATE DNA’S!  My blood cells and my bone marrow cells have the identical DNA as my brother does, while the cells in the rest of my body have my original DNA.  That’s why my blood type changed from my O to Leason’s A.  Is your mind about to explode?  All three of mine are.

SECOND SURVIVORS’ REUNION

I attended City of Hope’s 38th Annual Celebration of Life ~ Transplant Survivors’ Reunion, which was my second.  Once again, it was an inspiration fest, with survivor buttons stating how many years it has been since the wearer’s transplant.  The largest number i saw was 38!  They don’t call it City of Hope for nothing!  My family was there to celebrate with me, including my caretaker/husband, Todd, my daughter, Mychaela, my son, Rex, my parents, and of course, my donor/brother/hero/life-saver, Leason.  Our good friend, Jared, also attended.  Rex and Jared signed up for the Be The Match Registry in the hopes of donating bone marrow and saving someone’s life.  Mychaela surprised me and signed up on her own.  It was fantastic to witness a couple of first time meetings between a donor and a patient, especially an Israeli donor who flew from Tel Aviv to meet her Lebanese recipient!  I wish I could register!  It’s a life-altering gift for both parties.  The highlight of the day for me was getting to visit with Dr. P, my wonderful main doc from the time I first stepped foot into City of Hope until my transplant.  He oversaw all of my treatments, transfusions, tests, bone marrow biopsies and ultimately, my transplant.  He absolutely saved my life!  When he first saw Leason, he didn’t recognize him, but then Leason turned around and gave him a view of his backside.  Dr. P’s smile grew wide as he recognized the spot where he had harvested a quart of marrow 17 months earlier 🙂

SECOND EYE SURGERY

photo copy 2
Pull!

After my second cataract surgery, I can happily report that my vision is bionic, and I’m loving my new peepers 🙂 As soon as I woke up from the anesthesia, I was anxious to show off my sharpshooting skills!  The surgery is really cinchy, especially with Dr. K at the helm.  It just sounds kinda rad, since your eyeball is getting sliced, but it’s quick and not very painful at all.  I have learned over the past couple of years to NOT Google whatever procedure is on the horizon, because it’s no fun to spoil the surprise by knowing what to expect ahead of time.  Here is a play by play of the miracle that prevented me from going blind:  

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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).

61 thoughts on “On Second Thought

  1. So rad! I love that you are a Chimera! Sounds like something out of Game Of Thrones that would kick everyone’s ass. Now that your eyes are bionic, give us the list of your new favorite summer reads. Congrats!!!!

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    1. Hey Robin – I am living for GOT, especially now that I can f-ing SEE! I am just getting on the reading bandwagon after a two year hiatus… I’ll let you know if I come across any must-reads! XO

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  2. You’re an amazing women and it’s always great reading your updates! Best to you and your family, you are one amazing, close and awesome fam!

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  3. It is amazing what you have been through with your sense of humor in-tact. Glad to hear your second eye surgery was a success. Pause for a minute. OK – I’m back. The pause was because I was sitting in the dentist chair when I started this message, but had to stop when they were ready to work on me. When the doc approached with the syringe I thought of how many times you saw that scene over the last couple of years. One little shot in the mouth for me and hundreds for you – I don’t know how you did it. You are blessed and we are all blessed that you are here with us and that we are witnesses to your most amazing life.
    Love, Lynn and Carolee

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    1. Thanks, Lynn, for the continuous kind words! You and Carolee have been a.maz.ing.!!! I definitely look at the past 2 years as a wonderful gift with so many silver linings! I hope the time spent in the chair today was a blast 🙂 XO

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  4. So happy to witness how you use your second chance . . . by living it. Go for it, girl. You inspire us all. S3

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  5. Dear Chimy, Thanks for another beautiful, funny and inspiring post! Seriously LOL’d more than once. So happy to hear your cataract surgery was so successful. Oh and LOVE the heavy bangs : ) – great photo. I had some of those too,
    handy for keeping ones forehead warm. The live surgery video was interesting, glad I was done with lunch! Take care Wonder Woman- and btw you look beautiful as always.

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  6. Jos,
    I am home now and have ben thinking about your message. I can FEEL through your words your appreciation that you are alive and for the help you received from Todd, Leason, your parents, the doctors and everyone involved. It is difficult to appreciate each moment of each day we have – we usually take life for granted and it passes us by. But, you have had such a shocking experience, you will not take it for granted ever again, and that is a gift. To awaken to the moments and to the days we are given is truly miraculous. The miraculous is all around us, and with your second life and x-ray vision you have the opportunity to see it all.

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  7. Hey Joselyn, My name is Julie Wolfe an I’m a friend of Todd’s. I was in the hospital having my bone marrow transplant at the same time as you. I have AML Leukemia and the bone marrow transplant has also saved my life. I live for your comments as I can relate to everything and it makes me laugh so much. I can chimy up to just about everything except the cataracts. Although I go through a pair of glasses every 6 months. My hair used to be straight now it’s curly and has a mind of its own. When you said “I don’t look or feel the same as I did before” and that It’s okay to not be normal again because I am again” you gave me the freedom to say it’s ok to be like this. I’ve been wrestling with this for sometime and always try to find humor in in my new found stupidity and yes people look right through met but at 53 if this is it, it’s ok. Keep writing. Your beautiful humor keeps us above it all. Your family is wonderful, same as mine. Oh my doctor is Dr. Stein. Man of few words but I wouldn’t be here without him. I love him so much! Take care!

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    1. Dear Julie – I remember that we were in Helford at the same time… I am so glad to hear that you made it through under the expert care of Dr. Stein! Now, if we could just get through this pesky GvH, we’d be done, right? Keep going, Julie! You rock, my fellow chimera! XO

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  8. FANTASTIC JOS!!!! (hahahaha, about your ending info!!!)…..you crack me up. Like crazy!!! You are beautiful. Always have been. Always will be.

    Just keep having fun! I’m telling ya……it is going by SO fast!! I cannot believe I am sixty five years old. What the hell?!?!?!

    I get a new partial knee in two weeks (actually called a Patellafemoral Resurfacing…..I always told Doug I was special!)….having it done by a specialist in Utah (he has two office…Salt Lake or Park City. I bet you can guess which one I chose). Could NOT find one doctor in California that had done more than a teeny handful. NOT comforting. I even broke down and went to a doc up at Keck….:) Super great, wonderful credentials…….I would have been number 1-3. Ahhhhh….no thanks. SO, I found this guy, actually my fab internist found him after she did some research after receiving my cry for help….. (she really is fab). He has been doing them for TEN years!! Hooray! AND he followed Doug’s career. Big baseball fan. Never hurts to have personal touch, I say. So off I go to the land of polygamy. Pray for me. I’m still scared. I will think of your bravery……and I will whoop my sorry ass back to reality!

    xo Kristi

    p.s. have THE best fun at your folks Taco Time Party! I just love those two…..what a blessing to know them!!!!!

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    1. FANTASTIC KRISTI!!!! I also canNOT believe you’re 65! No one would believe it ~ you’re a fox 🙂 I’m excited that you are getting a bionic knee in Utah! Sounds like you found the perfect doc. Thanks for all the kind words and support throughout this adventure! Love you!

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  9. Hello there Jos. Just so nurse Todd is reassured that you and L4 are not now anatomical identical twins. I’m sure he checked that out first thing actually. That mighjt be too much of L4!! DNA rocks however! FYI, don’t worry about Muskrats,Tennille’s nephew Chris Cognac is a Kappa Sig Bro from San Jose so we have clout in that regard. I will say, based on your team of docs friends and family Jos that, no doubt, “love” was key in keeping it all together” throughout your journey and what a terrific outcome ensued.
    You never quit, never gave up, never lost hope or your sense of humor in the face of such adversity, and you are reaping the spoils of success big time now. Take a deep breath and smell the roses, You deserve it!!

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    1. Hi Bart –

      Yes, only sharing L4’s DNA of the blood and marrow 🙂 Thanks for putting my mind at ease on the Muskrats thing… We may need to call on your contact to keep that on the down low. You are so fantastically, wonderfully funny and supportive, Bart, and I dig it! XO

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  10. Just seeing you gave me the best gift and then you topped it off with the jersey. I will always treasure it as I do your friendship!

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    1. I loved seeing you in Phoenix, Hugh! Glad you like the jersey 🙂 Congrats to all your teams for doing so well. I, too, treasure our friendship ~ you are a very special guy! XO

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  11. You continue to inspire! I’m having a little fun with my knee right now and having followed your travails I have my situation firmly in perspective. May every day be better than the one before!
    Cheers!
    Karen

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  12. Joselyn, I am so happy for you!! Congradulations on your second eye surgery. Thank you for sharing your life with us, I am so honored to be a part of it. Your such an inspiration and I admire you so much!! Your beautiful, with or without hair and makeup.

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  13. You couldn’t be fugly if you tried. You radiate cuteness. (Ok, except for maybe that freshman photo.) You can’t help but to be fashionable. But that is just the stuff on the outside. As we’ve all seen, you are an absolute beauty inside and out. And with your successful eye surgery – you can see that is so! Here’s to you!

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    1. Stacy – You have been there every step of the way, right there with me, and I appreciate it SO much! You have always sent just the right message to keep me going! You and your adorable family are a bunch of radasses 🙂

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  14. Jos:

    You left your article unfinished or you dident finish writing about the “play by play” of the second eye operation????

    The screen went blank.

    Oh, Joselyn Ann …… words cannot express my great joy knowing you are pulling out of all your last “fight for life” as you and your family have gone through so much, it makes me weep with joy because you have won the battle Sweetheart ….. could it be true, at last ??!!

    No one will ever know how, in the middle of the long nights and days you could have stood the hours of anxiety and waiting and anguish not knowing what was going to happen next which went on for days after days… months after months.

    Your drama has been shared so eloquently with all your friends and families and this time of dispair and hope must be shared with the world….

    When you say you have been blessed, you have, because you have now been given a chance to live on with us.

    JOS…. I am soooooo relieved and love you so much.

    I thought of you last Thursday, May 22 when you had your second surgery and …..

    It has been a desperate and bewildering time for all of your family and for all of us so please tell us you will, indeed be OK, that the suffering is behind you…that the drama indeed is over… has wound down….

    Can we all relax a little?

    Can you, your beloved Toady and familly start living again.

    In my last agony I hope I shall be as brave as you have been, Joselyn, my beautiful niece CONGRATULATIONS….

    Auntie Char

    P.S. Are you really going to have a shower for Lisa July 12th??? We are excitedly looking forward to it….. We will all be there: “The Fambly from the North”: DivinaGracia, Isabella, Sofia Rose, Millicent, Olivia, Chloe and me.

    Love to Toady,

    Auntie Char

    Date: Thu, 29 May 2014 18:07:44 +0000 To: charlotte_mayfield@hotmail.com

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    1. Dear Auntie Char –
      Maybe you didn’t see the video of a cataract surgery ~ that was the play by play 🙂

      Thanks for the sweet support you have always given me! Yes, we are hosting a baby shower for Lisa on July 12, and we are very excited that you all can come down for it 🙂

      Love you,
      Jos XO

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  15. Oh Jos, you are such a light for all of us!! Knowing from experience the fear that can over take our clear thoughts if we allow it, you continue to quell and squash all of them. You inspire us with your humor and looking fear straight on and knocking the sh*t out of it. Not sure “super hero” is a large enough title for you. You encompass a deeper meaning to life, courage, strength, compassion, and the best part of life, Love!! You are a true “chimera” but not just because you carry Leason’s DNA. You are, always have been and continue to be a unique true to self You!! That in it self gives others the courage and impetus to be who they are. You are the true gift sweet You. I’m not alone in this thought or gratitude for you. You make my heart soar with joy and effervescence. Want to wrap all of that which you are around every living being. You’ve seen, felt and know what a treasure living in this linear life is and what it’s

    Sent from my iPhone

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    1. Hi Nanc’ – Your words are so incredible and they are SO encouraging to me! Thank you for reading my rants and for all the kind thoughts! Love to you and your awesome family! XO

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  16. You always make me laugh. You are so beautiful inside and out. Your amazing spirit and energy are palpable and draw people to you. I’m so glad your eyes are better than ever and I’m so blessed to be your friend.

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  17. Jos-
    After reading your post today it made me smile, laugh, and encouraged me to press on. You radiate beauty and definetly encourage many through your sense of humor and openness. Thanks for being so awesome!!

    xo Marilyn

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    1. Marilyn – I’m so glad to hear that this post has given you encouragement! You are a perfect combination of beauty and strength, and I’m so honored to be your friend! XO

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  18. I have no idea what you are talking about my friend! I just spent three days with you and you look hot! I didn’t even motice you weren’t wearing makeup and I think your hair is adorable. Of course your golden tennies were my favorite accessory you wore this week and they did being our dudes lots of luck.
    You look fantastic and are one of the most beautiful people I know. Thanks for the inspiration you bring all of us every day.

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  19. You will always be a princess 🙂 Thanks for sharing your updates…but this time I couldn’t get through that eye surgery video! You are amazing and truly an inspiration. I hope to see you soon. Love, Barbara

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  20. dear chimera! your words are so inspiring! and the video is amazing! it’s hard to believe how a surgeon can perform this intricate surgery!!! YOU have been so fortunate to have been in the hands of such skilled doctors. starting with our dear dr. P WHO SAVED YOUR LIFE!!! XXXOOO MOM

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  21. joselyn,
    damn girl…i love your hair! us 70s girls used to pay for a lil somethin that wasn’t stick straight! and who can pull off wearing neon pink top at lunch with no makeup and look like the bomb! all that being said, as we grow “more mature” we are constantly reminded that looks are nothing if the heart isn’t strong and in your case super human! grateful that you are the torch bearer for the new age WOMAN!
    xo
    mj

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    1. MJ – You are so funny! As you saw, my hair is completely OOC – Out Of Control! It was great running into you at Fashion Island 🙂 Thanks for the very kind words ~ you are quite amazing! XO

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  22. YOU ROCK!!! I love your OCC hair and your attitude and blog are an A+++!
    So glad to call you my friend for the past 35 years and keep the blog posts coming and the hair growing! ILD, TTF and FTFO and of course ENFU!!!

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  23. joselyn……..played golf with your very special mom yesterday, after which we had a “conversation.” As I am undergoing a second bout of cancer, she really encouraged me to read your blog; your positive attitude and clever sense of humor have served you well and obviously impacted tons of people (both healthy and unhealthy). It is a beautiful thing to realize how you have created so much goodness from such a bad situation. You GO, girl!! I’m right there with ya!

    Susie Cornett

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    1. Hi Susie – My mom told me how adorable you are and how much she loved playing with you on Monday 🙂 Thanks for checking out the blog. I hope it brought a smile or two to your face 🙂 Rock on, Susie ~ wishing you all the best! Joselyn XO

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