#nomorePICCforthischick

So after 217 days, my trusty little PICC line finally came out of my body last week.  It served me well, especially for my 90 days in the hospital, sparing me needle pokes on several hundred occasions, both for transfusions and for blood draws.  It even delivered my brother’s life saving super duper bone marrow into a very sick me 🙂  The 38 cm tube was inserted into a deep vein near my inner elbow, and ran upwards, through muscle, around my shoulder to my heart.  I loved it while I was having multiple transfusions and blood draws each day, especially those in the hospital in the middle of the night.  Grab your popcorn, settle in, and prepare to be amazed as you have a front row seat to enjoy a video of nurse Sallie removing my beloved Peripherally Inserted Central Catheter:

The news that I was to have my PICC removed came with the good news that I am now on an every other week schedule at City of Hope!  Dr. F said that this schedule will probably stay in place for the next 6 months.  IMG_1231_2Every visit will include a check up with Dr. F and a blood draw in the main lab with a needle stick, as opposed to the very special, small and cozy VAD (Ventricular Access Device) room, where I got to relax in a giant recliner with warm blankets and no pain, thanks to the PICC.  When this whole nightmare began a year ago, I was getting poked several times a week, so it’s no big f-ing deal AT ALL.  Stay in the know – be sure to keep tract of all of my procedures here:  www.joselynsbrawlwithshulmanssyndrome.wordpress.com/treatment-scoreboard/  I’d much rather not have to deal with these annoying plastic tubes coming out of my arm and wrapping my arm in plastic before showers and needing to have this whole thing cleaned and replaced each week.  Now I just have a quarter inch hole in my arm and an itchy patch where the sterile cover stuck to my FUSUOLS – F-ed Up Super Ugly Old Lady Skin.

Now here’s what you’ve all been waiting for:  an update on my post-transplant side effects!  My football feet have returned to their normal size and shape, although I have always thought feet were fairly bizarre and unattractive.  I guess they have a job to do and they get it done, but I’m not a huge fan of their appearance, especially when they resemble footballs.  The reason for their return to normalcy is the discontinuation of my high blood pressure meds, which were counteracting another med’s high blood pressure side effect.  It seems most of my meds are to combat side effects of other meds.  It’s difficult to keep it all straight with my chemo brain.  I have problems remembering lots of stuff – I just can’t remember what right now 🙂  The  joint pain continues, which is a total pain in the ass.  Not really, the pain is actually in my shoulders, elbows, wrists, hands, hips, knees and ankles.  I have a very specific temperature in which I feel comfortable.  Kinda like Goldilocks – too warm and I get a hideous prickly feeling, too cold and I can’t stop shaking.  Recently I got prickles on my head, and I tore my beanie off, started screaming and ran from the room.  Todd thought I was an insane freak (I mean even more than usual.)  We’re talking suddenly being thrown into a 700 degree sauna tightly wrapped in a cactus tortilla.  Still numb left knee.  Still fugly hematoma, but it’s definitely gone down quite a bit from it’s original baseball size.  Now it’s just slightly swollen, but the scar still LLFRMT – Looks Like Frankenstein Ravaged My Thigh.  I’ve noticed certain foods are not receiving a warm welcome into my digestive system.  These three particular foods were at the top of my favorites list for my entire life, so not being able to scarf on them totally blows.  Fish, chocolate and spicy foods.  Sucks.

IMG_1196I was totally stoked to learn of another volleyball team that is honoring me by printing my name on their jerseys!  This time, it’s Todd’s team that is going to Louisville in May to play for another national championship title.  The guys on Western States Laguna surprised both of us.  These “young” men are awesome athletes, who also happen to be super cool people and I so appreciate them thinking of me!

buster[1]My family met at Gabbi’s in old town Orange last week to celebrate life and it was SO wonderful!  I have no photos from the evening, because my chemo brain made sure I forgot, but my parents, Leason 4, Kesha, Andie, Leason 5, Todd, Mychaela, Rex and I shared stories, thanks, hopes and tears.  I am recovering from a life threatening disease; my father just successfully kicked prostate cancer’s ass and he was about to go in for a second surgery – this time on his spine to relieve some excruciating pain; my brother, Leason 4 is my lifesaver; Todd is the best caregiver and supporter this world has ever known; my mom is a boulder for all of us; Kesha is a super supportive wife, daughter-in-law and sister-in-law; Andie and L5 are amazing cheerleaders for everyone, sending fantastic cards and letters; and Mychaela and Rex are super strong sources of support, constantly checking in.  Gabbi and Ed let us take over their private dining/living room, which was a perfectly beautiful spot for our candlelit celebration.  This particular building holds a very special place in our hearts, because for many decades, it was a Buster Brown shoe store, where my father bought his childhood shoes, and my brother and I also bought our childhood shoes.  I can vividly remember going in there to buy my new kicks for kindergarten.  I deliberated and then deliberated some more.  I played with the totally bitchen foot measurer thingy.  I sat on the super boss red vinyl stool with the non-slip slanted ramp.  I still have my red leather lace-ups 🙂  BTW, my dad’s spinal surgery went very well, and after harassing the nurses quite a bit, he’s now recovering at home.  Yay Dad!  You’re a stud!

I want to thank everyone for continuing to support me in my recovery!  It is overwhelming to receive so many well wishes in so many different and wonderful forms.  It helps so much to keep my spirits up.  There are two of you that I MUST identify by name:  Mary McDonald and Erin O’Brien Meyer.  Mary has been there for me every step of the way from the very beginning.  She has provided love and support beyond what anyone could imagine, including a weekly pot of her amazing homemade chicken noodle soup, complete with her “Aunt Dottie’s” cheese that she imports from the deli she frequented as a child in the Bronx.  Erin has sent me a hysterical card EVERY day since I checked into the hospital.  Never missed a day.  NOT ONE DAY.  Just pulled today’s out of the mailbox.  Unreal!

#PICCremovaloscarwinner    #bringonthepokes     #footballfeetsacked     #goldilocksjustright     #nomorechocolatesucks     #gowesternstateslaguna     #myfamilyrocks      #busterbrownsforgenerations      #myfriendsrock

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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).

24 thoughts on “#nomorePICCforthischick

  1. TOJ-tears of joy!!! Love ya jos! You’re such an inspiration and I am so happy that pesky little effer is out of your arm!!! Xoxo

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  2. BBC – Buster Brown Rocks! Now you’re talking some good memories and I also used to play with the foot measuring thinga ma jig! Wow those for sure were simple days…just wondering what kind of shoes you’d get for back to school! I miss those days!
    So glad #footballfeetsacked is a reality in your life as the last time I saw you you were still not able to wear shoes and had on your flip flops. Also so glad you got that PICC line out…life is getting better all the time for you Jos and you so deserve it.
    It can only get better and better!
    ENFU…jae

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  3. Oh, it just keeps getting better and better. You are the toughest, strongest, meanest kick-ass chick south of Jefferson Boulevard, and we couldn’t be any happier for you. Relish every single moment — feel the sun, smell the sea, taste the pizza — you have survived! (By the way, we KNEW you would.) Cheers to you, Joselyn. You’re our hero. S3

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  4. PICC line out – check! Football feet gone – check! Every other week visits to doc – check! Intolerance to chocolate – whoa – does COH have a specialist for this?; by far one of your more disturbing symptoms!!! JK, sooooo happy everything(except chocolate issue) is trending in such a healthy, happy direction! Excellent news! Small world connection – Eddie and Gabbi are Frank’s step-mom’s son and daughter-in-law! What a great place to celebrate the embracing of life and the people we love

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  5. Great news Jos! I knew it would work out as you are the best patient and most courageous young lady on the planet. Buster Briown and his dog tag agree wholeheartedly too! They live in a shoe, ya know. that brought back memories all around. Now that your football feet have receded you can put on those kindergarten kicks again. PICC line out and numbers up. You are on a roll. Soon nurse Todd will be out of a job. Well that job at least. He ain’t going’ anywhere else any time soon either. We all got your back.

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  6. Another milestone, CHECK! So glad to hear you are doing well!!! Love Gabbi’s a total fave. Mary and Erin are awesome women, so so wonderful to have such devoted friends. I marvel at your ability to face challenges with humor. Congrats on this day! xo

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  7. Great news. Positive steps towards a full recovery! Keep blogging and inspiring all of us. Especially all those waiting for transplants and going through them. Keep movin’. Xo, La

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  8. Jos-
    When I grow up I want to be brave and funny like you, a friend like Erin and Mary, a partner like Todd, a daughter like mychaela and a mom like Maureen. I’m already a Trojan so I’ve got that part covered. You and your group inspire me everyday!
    Love love and so happy for you!
    Mary

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  9. Oh Joselyn! It is so wonderful to have you back and continually improving! You keep up being a good patient! We love you and are looking forward to playing with you in the hood again!
    xoxo
    Nancy

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  10. Dear Joselyn-I just finished reading all your posts – WOW! You had me laughing and crying. You definitely need to transfer your blog posts into a book. I am so amazed by how courageous you have been. And I am so happy you are surrounded by such a wonderful and loving family, and your dedicated friends, and amazing medical professionals. I will continue to remember you in my prayers. I know I haven’t seen you in a very long time, but please know that I love you and care about you. You are such an inspiration to me. xoxo Maureen

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  11. Jos,

    What an uplifting email! I am so glad that the PICC line is out and only ever other week doctor visits!

    We met Hayley in Barcelona too and she loved Senester at Sea. What an experience and she can’t wait to talk with you! We love you and are praying! Xoxo

    Gretchen and Dick

    Sent from my iPhone

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  12. Joselyn, So incredibly happy for you and your family. You absolutely must transfer your blog into a book. You are a talented writer that has kept your followers all spellbound throughout your journey, patiently waiting for your next blog to hit the inbox. Final chapter….RECOVERY (my personal favorite)-surrounded by friends, and family you are truly blessed. Thank you for sharing your amazing story. Happy endings are the BEST. xo kelly

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  13. amazing news! everything heading in the right direction….such a relief…..happy to hear about your wonderful fam celebration! many more to come…….

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  14. Oh, Jos: I have read your e with tears in my eyes and no matter what, you endured every polk and prod with dignity and bravery. You are a trooper, Sweetheart and your two friends you mentioned are just the best… little saints whom I love without ever meeting them. Jos, my tears are of joy…. you are finally almost there….almost able to live on your own with your beloved husband Toady. HAPPY BIRTHDAY AGAIN on April 2nd…. I want you to glance/ read Dante’s “Divine Comedie” because it describes so well what you have gone through as one of the great works of literature. Hell to Heaven (Wil Durant’s works on history has a synopsis of the cantos described so well if you do not want to read the whole thing!!). I hug you dear girl… Almost there…. I am proud of you…. Auntie Char

    Date: Mon, 29 Apr 2013 23:11:17 +0000 To: charlotte_mayfield@hotmail.com

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  15. Jos, It’s wonderful to hear your upbeat voice about the positive changes and progress you continue to make. Bummer about the fish, chocolate and spicy foods though. Maybe like a youngster you will grow out of that – you ARE brand new you know, despite that crinkly skin. You have been on an unbelievable trying journey and have shown us all how to deal with life threatening adversity with your strength, tenacity, sensitivity and humor. Lynn and Carolee

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  16. Jos,
    Love the video of the PICC removal. All this weird science is amazing – from a tube living in your body that can draw blood without additional pokes to delivering Leason’s life saving mega marrow. So so grateful for all the brilliant doctors that make this kind of thing possible.
    XOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXOXO

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  17. This is fantabulous news, Joselyn! So happy for you. All these little steps back to normal. You have now been officially inducted into the Survivor’s Club! Yahoo! Your outlook on life has forever been changed~the gifts just keep on coming. Proud of you, Jos. You have handled this life challenge with dignity, humor, humility and great joy in the little things that make life so amazing. You have had the rare opportunity to get to know what is really important in life and it has forever changed your perspective. Another little gift nobody tells you about, but you just get it~
    Much love to you, my friend!

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  18. Good for you Joselyn…that’s it, one day at a time. Soooo glad to hear things are going in the right direction!

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  19. Yeah Jos that must feel like such a relief to get that out …You are on a upward and onward journey to health, happiness and everything your beautiful heart desires.Keep up the amazing attitude and courage and know that your are so very , very loved and honored in every way. Love you so, Jennifer, Chanel, Trent, Weston and Savannah….xoxoxoxoxoxoxo

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  20. Joselyn – sounds like the saga continues but things continue to improve. I am so very happy for you and your whole family. I went to Chapman College from 1972-1976 so I also have a warm spot in my heart for downtown Orange. The Huggins used to live across the street and a few houses up from your current house. They had a furniture store very close to Buster Brown’s. I used to play basketball with Maggi’s husband, Patrick. What a great restaurant. Sorry you can’t eat spicy food but happy you got the foreign object removed from you arm. Lots of Love !

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  21. Jos you are the bravest girl around. All this good news is wonderful. Courage and humor wins out. Good Luck Todd at Nationals. Fight On.

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