We Have a Plan

So, we have a plan.  I will check into City of Hope on December 7 to begin my bone marrow transplant festivities.  On the morning of the 7th I will receive a Hickman catheter, which is wider gauged than the PICC line I now have in my left arm.  I guess marrow is thicker than all the other blood products and drugs I have received through my PICC.  The Hickman goes in my chest, under my collarbone and will have 2 available lines.  My chemo will start on the 8th, which I’m told is quite brutal.  I will not be able to eat through my mouth, because one of  my chemo drugs is going to tear up my throat and guts and make it too painful to take food in, so I will be fed intravenously.  I consider this a blessing, since I think the non-bacteria diet at COH hospital BLOWS.  My brother/hero/lifesaver, Leason IV, will be there the morning of the 14th to have his marrow harvested (about a quart), then it will be transplanted into me on the same day.  I will be there quite a few weeks after that to be monitored for rejection and any other infections or problems that may arise.  Christmas Day will probably be my official Shave My Head day, since I will be losing my hair, and at that point I may resemble a Chinese Crested “dog.”  While we are waiting for Leason’s marrow to graft to my bones, I will be in pain, but I am comforted to know that I will have my thumb on the morphine drip 🙂

There has been quite a bit to do in preparation for my BMT.  I have had or will have this coming week:  an EKG, an echocardiogram, a pulmonary function test, a CT scan of chest, pelvis and abdomen, an exam by a surgeon to determine whether my hematoma on my thigh will present a problem, a mental health evaluation, 24-hour pee test, a class on bone marrow transplants and another bone marrow biopsy.  I had my 3rd bone marrow biopsy last week, and all was going as planned and expected until I suddenly awoke with a f-ing drill in my hip bone.  I yelled, “I can FEEL that!” and they said, “We’re almost done.”  Not a pleasant procedure.  Not a pleasant day.  We left the house at 5:30am to get to my 7am appointment, after which I felt totally barfy for the rest of my appointments at COH that day.  Somehow, the knock-out drug didn’t mix well with the 19 other meds I’m on, and it made me delirious with nausea.  When I got into the car I knew I was going to hurl, so I got out some plastic bags and started my 12 hour barf session.  I felt more miserable than I can ever remember, throwing up every 20 minutes.  The big problem was that I missed an entire day of medication and consumed no fluids for 24 hours, when my kidneys were about to shut down as it was.  If I couldn’t take my morning meds and keep down some food and fluids by noon the next day (Thanksgiving), I would have to go back up to COH and check in for an f-ed up Thanksgiving dinner of IV fluids and medications.  Somehow, my body cooperated and I found a way over night to take down and keep down some ginger ale and some saltine nibbles.  Thanksgiving morning was a nervous time, as I tried to eat a little and take all of my pills.  They stayed down and I could stay at home 🙂

It’s been even more challenging to sleep lately…  I am trying to avoid putting pressure on my painful areas, which now include:  my upper left arm (where my PICC line is inserted and I have 2 tubes coming out of my body), my left thigh (where my f-ing hematoma is STILL the size of a baseball), both upper butt cheeks (where my bone marrow biopsies have been taken and are so very sore), my jaw (where my high level of Cyclosporin has decided to attack and make it appear as if I have been chewing tobacco since my kindergarten days at La Veta Elementary), and most currently my hips, quads, calves, biceps, and triceps where the Neupogen –NSHLAMFAANFP (Neupogen shots hurt like a Mo-Fo and are not for pussies) is in my bones trying to make white blood cells.  Maybe I could try standing on my head.

After considering the fact that I will lose my hair, I have come up with some pretty bad ass advantages:

-Saving huge $ on shampoo, conditioner, and all other hair care products

-No bad hair days

-Endless costume possibilities

-Ability to ride in convertibles without the fear of my hair suddenly whipping my eyes or choking me

-Cutting down on prep time in the morning

-No chance of being electrocuted by a hairdryer that somehow finds its way into a body of water

-No one can pull my hair during bar fights

I hope everyone had a wonderful Thanksgiving!  I am thankful to all of my supportive family and friends, especially for my awesome caregiver Todd and my generous little bro!!!

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).

135 thoughts on “We Have a Plan

  1. …keep strong as always……it’s count down to recovery from now on….warm wishes and affection to you and your loved ones….Silvia Marjoram…

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  2. I’m thinking about you so much today Jos as you begin this last leg of your journey to health. This very tough last leg. I hope it is going easy for you and the doctors and nurses are able to help you float through most of it. If love can heal you, then you will be okay because there is so much love coming your way. Stay strong dear friend.
    XOXOXO Love, Mary

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  3. Hi Joselyn!

    It is Cherri Peterson, I took two hundred toothbrushes to Nepal in October…furnished by Globle Grins, boy did I get a lot of Grins!!!

    My granddaughter Hailey was diagnosed with a rare bone marrow disease coming up on three years ago, she was five at the time. When she would go to Children’s Hospital to receive her blood transfusions and platelets she would say to her mother,
    ” do you know why I don’t cry?” the reply was “I have no idea, Hailey.” Hailey informed her…”I am stronger than I think I am!” Those words have become the whole families mantra. Hailey’s Hero was her two year old sister Emily and today Hailey
    gets to be a healthy seven year old in second grade.

    Thank you for being “stronger than you think,” May God surround you and your
    “Hero” through this recovery process!

    Many Blessings,

    Cherri Peterson

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  4. Hey Joselyn, You don’t know me but I’m a friend of Todds’ from high school. I’m actually at COH in room 6235. I have lukemia and I had my transplant on the 27 of Nov. So far so good for me, I was diagnosed June 8th and did all of my chemo at Hoag. Loved it! Got the big corner rooms! Nurses and doctors were great so I spent most of the time (summer) in there. Now over to the big town of Daurte for hopeefully my last and big horray! I’m with you on the bubble. I got released from that yesterday and felt like I had my freedom back. So I’m hanging for a while more. You think you have a lot of free time but i’ve been her for 3 weeks now and first time I’ve opened up my computer. Anyways, just wanted to send you my good energy and blood cells and know I’ll be think of you and Todd and although the road is long we need to keep the faith, I’m relating it to that stupid history class in high school that seemed to never end but all you have to get is a C.

    Take care and if you feel up to it maybe I can sneak in for a few minutes and say hi.
    Julie Pope Wolfe

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  5. Hi Joselyn.. I love your zest for life, your sense of humor & the fact that you always can find the positive in the negative! You Go Girl!! You can beat this $#!+ !!!! Cuz U R Joselyn!!!! ❤ U OXOX Laurie

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  6. Heard an ad for City of Hope yesterday and know you’re in the best place you could be! Thinking of you often. Hugs and hope! Linda

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  7. Uncle John and I thought about you and Leason all day Friday, and throughout the weekend. One more hurdle down. Let’s hope this is the last one. We really think it will be, and you are now on the road to recovery. I hope the side effects subside, and that you will be feeling your normal, vivacious self very soon. You’ve been through enough to last a lifetime, so enough of all these needles and drugs, etc. Let’s get you well! Bless Todd for all he has done, although you would have done the same for him. Bless Leason for all he has done, as well. I hope he is feeling okay. I imagine he will be sore for a while. Again, you would have done the same for him in a minute.

    One good thing about the chemo and losing your hair, at least if you were to get all hairy like Leason is (that is meant as a compliment for you, Leason) the chemo will hold things off for a while. That is one less thing for you to worry about right now. At least the hairy chest and back (if you get it) will come later when you are feeling good and can better cope with it. We promise we won’t laugh if you get all hairy, Jos! If we run out of the room suddenly, it’s probably just John having gas.

    Keep that sense of humor. I know Todd is good at that. I know he keeps you laughing and your spirits up. He really would make a good nurse, you know. He’s so cute, people would forget they were sick, or what was wrong with them! (Uncle John didn’t say that, Aunt Wendy did…just so we are clear on that!). You take care of yourself and gets lots of rest for your homecoming. It will be here before you know it.

    Say hello to Todd and Leason for us.

    We love you guys and can’t wait to hear that the graft has been successful.

    Love, Aunt Wendy and Uncle John

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  8. Hi jos
    Thinking of you! Went to Disneyland last week. The decorations are beautiful know u love it too, it’s such fun! The parade is my favorite though. This time of year is special ! Got your card with your beautiful kids with their wonderful white teeth on the front! Yes we are all hoping!
    Julie

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  9. Joselyn, thinking & Praying for you and your Amazing Family! I know this will work!!! Merry Christmas, Peace in the New Year, & Loving Congratulations as
    you heal and Bounce Back from this bad dream…………… always thinking of you.

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  10. Hi Joselyn, I just stopped by to check on you – although not physically there, I just wanted to see how you and your family were holding up. Hang in there! Leticia

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  11. Keeping you and your beautiful family in our hearts and prayers every day.
    Stay strong and remember there is endless love coming your way!

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  12. Joselyn,
    We are thinking about you and continuing to pray for you. May this new year bring you good health and happy days.
    Terri and Blake

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  13. Jos and family…..we are thinking about you and sending the best healing thoughts! And we hope and pray you are feeling better than the last report!! We continue to send much love,
    Kristi and Doug

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  14. Joselyn,
    I was just thinking of you and thought I would let you know that. I have been thinking of something fabulous to say that would just take all of your pain away for a moment, but I’m, just not that fab, I guess…So just know that I and a gazillion other people are thinking about you and Tod and your kids (and Twiggy!). You are an amazing person who is part of an amazing family. Stay strong!
    xo
    Samantha

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  15. Hi Joselyn,
    I was thinking of you today and logged onto your blog.
    Wow- you are one tough woman! I don’t exactly know what to say or know what you’re going through but I’ve always said that I would fight the fight if I ever had to!!! ….especially for my children! Your strength, courage, patience, love and….humor is amazing!! I know you will get through this!!
    A smile, a wish and positive thoughts to you and your family,
    xo Kristin

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  16. Hi Jos,

    I was just thinking about you (again) as you seem to be in my thoughts on a daily basis. Happy 2013 & let’s hope this year will be the best ever for you, as you recover from this horrible illness. You are such an inspiration to all of us who are lucky enough to call you our friend and I want you to know that we are all here pulling for you with love, with prayers and with good wishes! Just remember: “You is kind, you is smart, you is important!” ~ Abilene from The Help

    XO, Barb

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  17. Hi Jos,
    We are hoping things are going smoothly and thinking about you (all the time!). Praying for this to be over and for you to be back home real soon. Keep fighting and stay strong! We love you!

    Like

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