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!!!

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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).

135 thoughts on “We Have a Plan

  1. Having hair is greatly over rated, I haven’t had much since 12th grade and it wasn’t a problem. Look at Bill Macdonald he has a ton of it and it looks like crap (very grey) and because he has so much of it people thinks it is a wig. I have been with him where people want to touch and pull on it because they think it is fake. True story.

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  2. Wow, Joselyn you are amazing! The fact that you can cleary articulate what you are going through and still keeping a sence of humor is amazing- you ROCK!!!
    Love and prayers are with you daily!

    Tory 🙂

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  3. Hi Joselyn, sounds like the best plan although a tough one for you in the short run, the end justifies the means as I have witnessed successfully first hand for our Bro Dan Lucas. So give ’em hell and I will be thinking about you every step of the way. All of your many admirers would visit in a New York minute BUT we know that is illadvised for a while. Nurse/Bro Todd, SAE Rex ugh! lol, Michaela (sp? as always-am I close?) and your parents and Todd’s plus Hero Leason IV will cover for all of us. I don’t know Leason but please give him a special shout out for me. Love.

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  4. Hi Joselyn, Wow it breaks my heart to hear how much you have to endure on a daily basis. Your strength and sense of humor never fail to amaze me. I will be praying for you as you undergo the bone marrow transplant. Stay strong and know that you are loved by so many people.
    xoxo

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  5. Oh shit…my thoughts tonight! No words for all you are enduring. I came close to having to learn to stand on my head and walk with my hands! I thought I could join Cirque Du Soliel and live in Vegas. Thank God I was able to avoid this! I continue to keep you in my thoughts and prayers. You are stronger than this challenge and you are funny! I always knew this!

    XO La

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  6. So obviously heroics runs in your family. What a precious picture of Leason and you. Sad to hear what you are going through – but happy to hear there is a plan. We are sending you tons of strength, love and thoughts of healing. Next Thanksgiving you will be at your table -surrounded by some of the many who adore you and you will look back on all this and be in awe of yourself for how you endured. Thinking of you lots and wishing you wellness. Love, Stacy, n8, Elory and Elias

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  7. Hi Joselyn,
    My sister much preferred the Hickman to the PICC-she said it was much more tolerable and quite painless. So glad that there is what sounds like a solid plan for some long awaited progress with this fight. Been thinking of you a lot lately and as your Thanksgiving time came, I thought how thankful I am for all the friends I have made through meeting you and Todd. Our ’84 Olympic Team is planning to go to Torino to defend the World Championship. We have added Lindon Crow to our roster. We will not be Team Canada, but PIT Canada. PIT is Primo in Torino-thought you would like that!
    I am counting on seeing you courtside in the future-so happy to read there is no quit in you! As I would expect.
    Much love,
    Hugh

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  8. Joselyn, Your blog just blows me away. I tried to read it out loud to Bill this morning, and we were both too choked up to speak. Thank you for sharing your story with all of us. You have become an inspiration to so many. It is impossible to imagine what you and your family are going through. Positive energy coming your way, with many prayers and hugs. We look forward to celebrating in your recovery after this nightmare is over. Hang in there, there is a light at the end of the tunnel. xo

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  9. Glad you have a plan! I’ve heard so many successul stories from bone marrow transplant procedures, 1 frriend beat stage 4 cancer, the other free of lymphoma for 7 years now…all due to bone marrow transplants. I’m so stoked for you and hope your pokes and wounds heal soon. If I recall correctly you have a cute head, plus you’re a trend setter, so I’m sure baldness is going to catch on soon. I’d join you but I just had my hair weaved for the first time and I kinda like it. You’re almost to the finish line horsey girl. Our thoughts are with you!

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  10. Laying here not sleeping, thinking of you and I had an idea. As soon as you kick Shulman’s ass to the curb,, how about if you put your amazing design talent into creating your own scarf / hat line? I have 2 friends battling breast cancer right now who would love a hip, cool, unique fashion statement aka a Joselyn Miller design! Anyway just a a thought for you to distract yourself from itching, scratching, barfing,…..Hope you are able to sleep my friend. Sweet dreams Jos

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  11. Dear Jos,
    Seeing the kids and Todd on Thanksgiving was such a treat as i looked into their eyes i saw you and Todd your love and beauty transcends into Mychaela and Rex..You were so missed..You have so much love and support all around you …..When Todd spoke to me regarding what you have been through he had such love and respect for you..I think of you throughout my day sending loving thoughts you way…I will hold you deep in my prayers and believe that you will conquer this….
    FIGHT ON…
    I love you,
    Jennifer Miller..

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  12. Dear Joselyn,
    Todd just informed us of what you are “brawling with” and we just read all of your blogs which show the incredible feisty spirit that you have against this mo-fo, f-ing syndrome. I would say that you are definitely winning on style and invective aginst it! Your blog gets my personal pulitzer recommendation and should be read by anyone going through such “very challenging health problems” as Todd so euphemistically put it. I relish your hard hitting, fists out attack and your appreciation of your brother. The syndrome “blows” and you are amazing!!!
    You will dominate!! Barbara and Greg

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  13. NYLESOJ, DEAR FRIEND AND NEIGHBOR,
    (you are wonderfully amazing)
    KEEP T HE BLOGS COMING!!!
    THE “F” WORD IS STUNNING !!!
    I HAVE ENTERED THE FIGHT,
    AND AM THERE DAYAND NIGHT!!!
    WITH HEARTY, HEALTHY HUGS, AND LOVE
    SALLY FORBES

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  14. Joselyn,
    Your positive outlook and humor during this really sucky time are simply amazing. Your blog posts are so poweful, informative and are should be published. I am not kidding! They are an inspiration to all of us. You have such a gift in your writing and I am so impressed that you have found a way to share your humor in all of this.
    It is nice to know you are taking a very important step that can put all of this behind you! Hair is totally overrated. Does this mean those little chin hairs go away too? I knew there was a silver lining here … haha.
    We will all celebrate Christmas wth you in the spring when you are healthy. The holidays have way too much LA traffic and cranky shoppers anyway.
    We are here if you need anything.
    God bless you. You rock!
    Leslie, Dave and the boys

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  15. Hey Jos – So….enough about you 🙂 I just got back from Cambodia and Vietnam. A last minute trip to take advantage of things being slow with Thanksgiving. Saw some pretty cool stuff and millions of Vespas as I’m sure you know. Todd gave some pointers about things to do in Siem Riep but I was already poolside in my Swedish Speedo, Tiger Beer in hand (let me know if you want a picture of that). Good times. Went with a college roommate so was sin hermano Luke.
    Your last post talks about going bald but I was honestly hoping for more of an update on your Movember Mo – maybe even a picture too. It is a lot of females (and in my case males) dream to represent.
    As Will Ferrell says in Old School – keep on trucking. I’m not sure there is much I can offer to help you out besides back up marrow or blood but let me know if you can think of anything I can do for Todd or other members of your Dream Team Support Crew.

    Much Love – el Jefe

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  16. Joselyn, Not the plan you had hoped, and many of prayed for, but a plan indeed. My son’s fiance had a bone marrow transplant three years ago at Stanford and so I understand what you’re about to endure. Please stay positive, never-ever give up, don’t worry about anything but getting better one day at a time. Don’t rush the process and listen to your body. You can beat this! You are about to get New Life and what a blessing and the best x-mas gift ever from your brother. You and all involved are in my daily prayers. Thanks for making me laugh and cry every time I read your posts. You are such an inspiration to all of us!

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  17. JOsssssssssss, We love you so so so much. and know we are thinking of you every single day. I cant wait to sing pi phi songs with you all around the world and hear about all of your future adventures and try…just try to beat you in collecting the most things from each country. See you soon, Meebs

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  18. wait that is so weird, i just saw that my mom commented above me. We Pi Phis must be able to read minds. Mychaela i know you can hear us.

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  19. Hello Joselyn,
    A few more weeks of major BS and then the start of your healing. One day at a time, stay strong and may that morphine button help get you through the toughest times. I think about you every day, and send positve thoughts and healing energy your way. Your Blog is one of the most amazing things I have ever read, by far the most compelling war story ever written. You are my idol.

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  20. Jos – If anyone can rock bald, you can… I don’t know many gals who are as stylish and gutsy as you. You’ll surely start a new trend and women everywhere will be racing to their stylist for a #1 buzz! In all seriousness, you are beautiful with hair or hairless.

    Keep soldiering on and keep writing… You’re giving us the gift of perspective and what is truly important.
    Love you xxo
    Nettie

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  21. Josh,
    We are praying for you and your brother.. Just found out about your illness. So sorry to hear of it. You are so brave and you have an amazing family and I know all will go well for you. You are very strong.Much love, Sondra and Ted Millard

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  22. Jos,
    We are thinking of you and the entire family. On December 7th you and Leason will be very much in our thoughts and prayers. Thank you for your updates.
    Lots of love
    Sam and Abra

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  23. Hi Josely,
    I just read your entire blog – you are an amazing writer!
    I am so sorry for all you are going through.
    Please know you are in my thoughts and prayers.
    You are going to kick this!
    love,
    Erin Meyer

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  24. Love the blog – but wish you never had to write it. You are totally amazing! Our positive thoughts and prayers are all for you, todd, and the kids. What an inspiration! Much love – wizz aschieris and family

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  25. My mom told me about tonight’s singing. I will be thinking of you and praying for you and your family in the days and weeks ahead. Love to you, Kirsten

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  26. Jos
    My dear big sis! Sorry I am just finding out about this now. Thanks for sharing your story. You are amazing and strong. Using your fabulous humor to get you through is key. It will all work out! COH is a wonderful place. Sending hugs and blessings to you. Love, Melanie

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  27. Hi jos!
    We will all be keeping you in our prayers during your new treatment. You are so strong and have been thru so much! My deal is that you work to beat this and I will review Project Runway each week for you! My prayers will be with you and your wonderful family’
    All the best!:)
    Julie

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  28. Joselyn!

    As you may be aware, I have been living on Mars for the past couple of years with only a faint glimpse of the earth. Your blog just found it’s way to me through comrade Erin Meyer.

    To say that this is the most fascinating, compelling and hopeful piece on this sort of subject any of us have read would probably be an understatement. Lets put it this way.. I left my son waiting 35 minutes on the blustery pool deck because I couldn’t tear myself away as I sat sequestered in my car glued to the screen. WTIBY,YSBPBYAFB (When this is behind you, you should be published because you are F-ing brilliant).

    Everything you do, you do with grace, humor, jaw dropping creativity, and love. I bow at your feet. Leasy-boy is our hero for doing this for you, but know too that you are everyone’s hero. Thank you for showing all of us what this situation could look like; the superhuman possibilities of how your circumstances could be handled. What an example of joy and dignity and prevalence you have exhibited for everyone in your sphere, and beyond.

    Finally, may I address the obvious, and that is that you are a Pomeroy, and the Pomeroys are simply the most awesome people in the entire Universe (and I like Todd too). In my mind, you have already gotten through this, you are just now on your final victory lap. Know too that everyone you have ever known in your life (including those in the shadows who don’t want to interfere or burden you with their thoughts) are with you these next few weeks. You are beyond loved.

    You ROCK Joselyn.

    XXX Merry

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  29. Pops came home from his heart transplant on a feeding tube. He was not able to swallow food after his transplant and they said he would never be able to eat food through his mouth again. They also told him he would never be able to come back to his home in the Colorado Rockies because of the altitude. 3 months after his transplant he drove to Vail and ate a piece of strawberry pie I had made. The Colorado Rockies and pie were his motivation! You can overcome anything! This is proof. Focus on your will and you can overcome anything!

    XO Laura

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  30. Best of luck tomorrow and in the weeks ahead. I’m thinking about you and Todd every day and will be checking in for good news. Be strong and keep fighting.

    Rich

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  31. HI Joselyn,

    I am thinking of you tomorrow and sending prayers your way. I too lost my hair and I had a few different wigs depending on my mood – one was this hot little blond number on my Marilyn Monroe days. Rick never knew what woman would await him at home it was kind of exciting 🙂 I did pretty well on Chemo and it did not end up being as bad as everyone said – I hope you find the same. I am just so sorry you are having to go through all of this but it must be so comforting knowing how many people love and support you – WOW! It is just such a tribute to the amazing person you are and how much you are loved by so many. Hang in there my friend – Blackmore

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  32. So sorry to hear about your ongoing battle but am quite sure knowing you that you will pull through this awful crap!
    As you may know you have always been my favorite sister in law (joking at dinners, etc.) You are a great person and would just like to share with you a quote by Chuck Pagano (Who? He is the head coach of the Colts who is battling leukemia and going through chemo).
    “We will, we must, we have no choice by any means necessary. We MUST overcome!”
    Please enter I or you in this saying, enjoy and I truly hope it helps!
    Good luck with your upcoming process(es)! Stay strong and funny (as you always are) as humor is a very strong and powerful part of staying positive and healthy!!!

    Grant

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  33. Joseyln,

    Sending positive thoughts and prayers your way. You are a truly awesome lady and will get through this. Your positive attitude amazes me and you have so many family and friends who are supporting you. I hope to see your blog published one day in the not so distant future with a picture of a very healthy beautiful you on the cover! Your story inspires us all.

    xoxo Ali

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  34. Jos- had a fun Christmas Luncheon today with “the girls” (we missed your mama OH so much)….wanted you to know we ALL prayed together for you, lil Leason and your whole fam!!!!!!
    Don’t ever forget EVERYONE is thinking about you, sending you the very best healing energy and squeezing you (gently but firmly) with a GIANT GROUP HUG!! God’s speed you gallant, precious, beautiful woman!! Love love love…….looking forward to hearing all the GOOD news ahead!!
    Kristi

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  35. Jos… you’ve got this… you’re in control… keep kicking ass and proving to the world that we all get to choose to be the best versions of ourselves no matter what the circumstance! Love you…

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  36. Jos, you are in my prayers and I am not happy about everything you have to go through especially the tests, but the transplant is the beginning of restoration, a word that means so much to me after the hurricane. Picture troops with bagpipes coming over the ridge…Anyway, thanks so much for doing this blog. Keep the faith!!! New York sends its strength and its love!!!!! xoxo
    Celia and Jim, and your Brownies: catherine and jamie

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