Transitioning Back to “Normal”

Health and Wellness, Health Humor, , , , , , , , , , 58 Comments

I’m feeling more and more like my prick (pre + sick) self lately, and my last visit to City of Hope’s Main Lab waiting room confirmed it.  Putting my new vision to use, I surveyed my fellow patients, all there for AFBT – Another F-ing Blood Test, and I realized I was the ONLY one without a wheelchair, dark glasses, beanie, barf bowl, PICC line, heart monitor, hospital gown, cane, oxygen, head scarf, nurse attendant, eye patch, IV tree, or bandage.  I gave the stuffed room a thorough recon and failed to glimpse a single patient without at least one of these accessories.  Most had more than one.  I had every one of them at some point during my brawl.  It struck me – how far I’d come in the last 18 months.  Damn close to a prick full circle.  You could almost say I was… normal.

My vitals from that last visit were:  BP:  122/78, Temp:  98.6, Weight:  56.5 kg.   normal.
My bloodwork (about 20 tests) was in target ranges.  normal.

Today I was driving around, doing errands and sh*t, and I remarked to myself, “Hey self!  Wow!  You are doing normal errands and sh*t!”  I noticed, however, that my new normal has a different mindset than my old normal.  Someone (my former normal self would have used the phrase ‘some a**hole’) cut in front of me in line, and I smiled, appreciating the extra minutes of air conditioning.  Someone (same as above) merged wayyyyy too close to me on Laguna Canyon Road, then flipped me the international bird, and I mouthed, “Have a nice day,” as I gave a little wave.  I took a tad too long communicating my Starb’s order to the (former normal self would have added a prefix that rhymes with the word, ‘witch’) barista:  ‘tall decaf coffee frap no whip’ – no, ‘grande decaf coffee frap no whip’ – no, ‘tall skinny decaf coffee frap no whip’, no- ‘grande soy decaf coffee frap no whip!’  She was way over me and my frap and let me know it, but I smiled and put some bread in her jar and said, “Man, what are you doin’ here?”  No, not that last part.  That last part is from a Billy Joel song.  I just enjoy messin’ with ya.  normal.

I’ve been able to get back to some normal adventurous sh*t, too.  Todd and I recently got away on a trip to the Exuma Cays in the Bahamas, where I was thrilled to return to the water and make some new friends 🙂  normal.

DSC01978
Swimming with some big major piggies on Big Major Cay. normal.
Diving a cocaine runner's wrecked DC-3. normal.
Diving a famous 1970’s cocaine runner’s wrecked DC-3. normal.
322 scheduled drops in 2 months. normal.
322 scheduled drops in 2 months. normal.

I’m seeing very well these days and I no longer have to adhere to my post-surgery eye drop schedules.  normal.*

*footnote ~ I will prob have to endure a couple more minor procedures on my eyes to off some growths that are prob going to start f-ing up my vision.  This condition is called Posterior Lens Capsule Opacification, or PCO, but I can prob think of a more fun acronym.  It is treated with a “frickin’ laser” – go ahead, make air quotation marks with your fingers, and say it like Dr. Evil  – “frickin’ laser.”  Ya, baby!  It will be outpatient and cinchy.  Dr. K assures me this complication is – you guessed it – normal.

We'll treat Joselyn's eyes with a
Frau! We’ll treat Joselyn’s eyes with a “frickin’ laser.”

I’m back to being a normal neighbor, too.  Todd and I hosted a Be The Match bone marrow donor drive in our community on the 4th of July, where, along with some radass volunteers (Mary, Kathleen, Cindy, Michael, Scott, Jeff, Diane, Mychaela, Hailey, Gary and Nancy) we were able to add over 200 new SEPDALS – Stupendously Excellent Potential Donors And Life Savers to the Registry!  I made sure that a little Bud or JD on the swab was okay, just in case one or two (wink wink) volunteer donors celebrated the 4th with vigor.  Shoulda asked about Cheetos 🙂  Huge kudos to Mary for her suggestion to have the drive!  We were overwhelmed by the eager willingness of these mostly 20-somethings to step up and commit to giving their marrow to otherwise terminal patients.  Hip Hip Hooray!  Get it? – marrow comes from the hips?  I may have chemo brain, but I can still produce some astoundingly mind-blowing word plays, right?   Just like if I were… normal.

BTM donor drive volunteers
Fellow transplant survivor
Not much clothing for stickers
Cheek swabbing by Gianni
Patriotic potential donors
Fellow transplant survivor
Busy, busy booth
200 potential lives saved
IMG_2651
Ready…… swab!

If you are interested in possibly saving a life, go to bethematch.org or join my team by going to my team page.  Perhaps you could be the lifesaving cure that gets someone back to their normal!  Todd and I made a house call yesterday to get 6 more terrific SEPDALS on the Registry.  Thanks Clayton, Andy, Justin, Devon, Chloe and Katie for supporting Be The Match and swabbing your cheeks 🙂  One or more of you could be the return ticket from sick to normal!

As I return to normal, I can’t celebrate completely, as Louisa, my next door neighbor at City of Hope’s Helford Hospital, who had her transplant 4 days after mine, is struggling greatly with her recovery.  She’s still suffering with some major Graft vs. Host eye problems, causing her sight to be very poor, she’s got large Graft vs. Host lesions all over her body, she’s been told she will have to have all of her teeth removed, and her hair isn’t growing back.  She’s a brawler, don’t get me wrong, but she’s been hit with some tough sh*t, and I’m anxious for her to get back to her normal.

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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).

58 thoughts on “Transitioning Back to “Normal””

  3. Jos…. Your blog is, once again, amazing!! I am always so entertained and so very touched. This one hit me hard at the end with the news of your precious, struggling “neighbor”. It just made me so sad for her and her family. After wiping my eyes and blowing my nose (I’m on Percocet for my two week post op knee replacement….shall I complain? NOT a chance!!! But I do think the pain killers add to my already overly tender cry baby heart), I prayed for your friend and I gave thanks that your journey is going so “normally-ish” now!!!!

    XOXO Kristi

    IPad – Kristi DeCinces

    >

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    1. Kristi – Thanks for the kind thoughts and prayers for Louisa… I hope your knee is healing well and you don’t need your Vitamin P for too much longer! You have an amazing tender heart ❤

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  4. Hi Joselyn

    Wow what a great blog. And the marrow event looks amazing. 200 great job.

    Vacation, life is good. Great smiles. Looking happy and healthy.

    ☺

    If you decide to host another drive give me a call and I will come visit.

    So good to hear from you…..

    Say hello to the family. Next time you are here at COH, give me a call and we can visit.

    Vivian Abernathy
    Community Outreach Specialist
    Be The Match Marrow Registry
    City of Hope
    Phone: 626-256-4673 ext.63812
    Cell: 626-283-9182
    vabernathy@coh.org

    [cid:image001.gif@01CF9C32.AFF79550]
    Be the One to Save a Life, Register Today
    join.marrow.org -Promocode: Hope4All

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    1. Hi Vivian – Thanks for checking out my blog 🙂 Yes, we were very happy with our donor drive’s turnout! I just got 6 more to add to those we got that day. We’d absolutely love to get the news some day that one of “ours” was called as a match! We’d love to see you again at a drive! I’m so glad I met you at COH!!!

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  5. I love reading your blogs, Josrlyn! Your ability to weave in humor and wit into your creative literary posts keep me smiling to the end! Once again, you remind us that our small problems are so very miniscule … you are an inspiration and a warrior-hero. Congratulations on leaving the worse behind, and enjoy those “normal” adventures and travels that are in your future!!!

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  6. Hi Jos, Glad to hear you continue to make gains toward your new normal, which surely will be appreciated more than the old normal would have been. We love to read about how you are continuing to do the more “normal” things that you like to do – swimming with pigs and sharks. You know you are in a better place when you can happily wave to someone who cuts you off and then flips you off. Love, Lynn and Carolee

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    1. Thanks, Lynn and Carolee, for the continued positive thoughts and support! It means so much to me knowing you are there 🙂 Maybe we can all swim with pigs and sharks together, since you are both divers 🙂 XO

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  8. Joselyn, received several FB posts today regarding friends and/or their family members who are in hospitals or who have just passed. And so I’m really ecstatic to read this post. I’m so happy to hear about how grateful and blessed you feel, about the awesome work you’re doing for Be The Match, and that your perspective on life has changed for the better. I too feel extremely blessed right now and want to thank you for the reminder friend!! Love, Karen

    Sent from my iPhone

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    1. Dear Karen – I’m so sorry to hear of your friends and their family members! I’m glad you are feeling blessed ~ you deserve it! I’m hoping you are back to your normal! XO

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  9. You made my DAY! Who else swims with PIGS? it’s supposed to be Dolphins, silly.
    Keep writing, love it, love it , love it! Cheryll McDowell

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  11. Joselyn, All this news sounds so positive, except for other rude drivers.
    Very happy to hear.
    Also nice pig in the water is that why the shark was circling?

    Michael Cargile | Senior Vice President
    Voit Real Estate Services
    2020 Main Street, Suite 100 | Irvine, CA 92614
    T (949) 263-5338 | F (949) 261-9092
    mcargile@voitco.com | http://www.voitco.com
    License #00491668

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  12. Goosebumps everywhere for the most abnormally normal friend a girl could have!
    XOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXO Love, Mary

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  14. Hey Jos, I love the NEW NORMAL I pray with you for Louisa’s recovery. Your “match” was flawless as siblings most often can be, so our thoughts and prayers for Louisa whose match may not be as perfect are important about now. After all you have been through you are still thinking of others, which is your “OLD” and wonderful normal. Glad to have you “back” Jos. You’re gawgous and don’t ever change!

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    1. Hey Jos!!!
      Your new normal is better than a lot of people’s old normal!
      Thanks for sharing yourself!!
      So happy to see so many prayers answered thru fun & amazing You!
      Keep hanging in there!!
      Xox, Ann

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  15. Hey Jos–Guess what you’ll never be normal. You are exceptional. So happy for you and Todd. Keep on Writin’.

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  16. First off, Jos…you will never, never truly be…normal. No, not you. Never took the normal path a day in your life, I suspect. But now, I must tell you that you will never, ever, ever be normal…because, my dear Jos…yep…drum roll, please…you are definitely not in anyway shape or form normal. You are EXCEPTIONAL and always will be and all of your family and friends know this to be the truth! You keep on being your amazing and exceptional self and I, for one, wouldn’t have it any other way! Love you, you not a drop of normal, you!!!!!

    PS So glad you are back…now you really can say “Been there and back” and mean it~

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  21. I had a guy try to turn left in front of me at a stop sign yesterday. I would have let him go ahead of me if he had indicated his intentions with his turn signal. But he didn’t, so I pulled out very slowly and blocked his progress. He gave me a singular finger hand signal of some kind. So I smiled, said something in French, farted in his general direction and carried on. So you see, Jos, your new normal is not normal at all – just a little bit of me.

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  22. So happy you r feeling back to “normal!” You always enlighten me and give such a great perspective on life xxxsue

    Sent from my iPad

    >

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  24. Well Jos, although ‘normal’ was never really your style, I am very happy to see that your life is returning back to your much better version of ‘normal’. Wishing you and your family all the best always.
    Love you,
    Patty

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    1. Here’s to swimming with PIGS and normal sh*t for you my friend! Such amazing progress you’re made in 18 months and so glad you’re collecting bone marrow donors with your “swab” drives! It’s interesting when you go through a life threatening disease how you don’t sweat the small things in life anymore…As you’re just grateful to be here and be alive! Love your spirit Jos!! TTF Jae

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  25. Joselyn,

    This is such great news! Thanks for the update and love you! xoxo

    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

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  26. Jos:

    This all sounds “normal” and reading it, I held my breath every paragrph but you are doing so well and looked so pretty at the shower…Oh, Jos… I am so proud of you and your family.

    You are probably just returning from Pa- riee as I have been thinking of you, your daughter and mom zipping around our favorite city!

    Just let me know how you were and I am praying for your neighbor’s recovery…. It must be very difficult seeing her suffer like you did… but what sad things she must undergo to live…

    Je te ami Cherrie et bon Toady!

    Auntie Char

    Date: Thu, 10 Jul 2014 18:08:42 +0000 To: charlotte_mayfield@hotmail.com

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  28. Hi Joselyn! I found you :)… I will need more time than just a couple of minutes to go over your blog to get a better understanding…But, I can say for sure that is very impressive and touching. Wow! You are amazing, not just beautiful… I will get back to you soon.

    Big hug and respect,

    Diana (Barracuda Grill/Bermuda)

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