I apologize for taking an exorbitant amount of time to get another post up, but I have been feeling rather sh*tty as of late. I am sitting here in a slightly morphine induced haze, trying to update you on the previous 5 weeks of my life. Here goes nothing: On December 3rd, a couple of carolers started singing outside our house just after sunset. I walked outside to see about 200 of my friends and family singing Christmas carols to me, Todd, my mom and dad, and Santa Claus, who all happened to be there hanging out with me :). It made me feel beyond honored and extremely loved to see everyone there and feel the Christmas spirit. After about 15 minutes of some of my favorite Christmas jingles, Todd said a few words to thank everyone for their support and then he introduced Santa as my brother Leason 4, my bone marrow donor. The crowd erupted with cheering and it truly lifted my spirits like never before!
I found out later that many of the carolers were also writing me well wishes that night on these awesome little cards and all of them are hung up in my hospital room right now in the form of a garland. It is quite the sight and I love looking at it each day. Thank you to everyone who put the caroling together, especially Micki Rach, amazing soloist Lynn Nolan, Gretchen Miller, Mary McDonald and Jennifer Martin. Thanks to all my Pi Phi sisters for helping put the notes together.
The moment doctors or nurses walk into my room, they are amazed at the way it is decorated. It is far removed from the sterile hospital environment I first walked into. It includes a nerf dart board (areas of target include “chemo,” “bloody mouth pain,” and “aplastic anemia” as the bullseye). This game has become so popular among nurses and doctors that they usually take a few shots during their room visit to better their scores. I also have three Christmas trees, a bulletin board full of pictures, the garland of hundreds of notes from friends and family, two new games my parents have come up with, and a creative display for all of my new head wear. I’m feeling quite at home here, and it definitely helps to have my family here supporting me each day as well. Todd has brought me a very creative and encouraging card each and every day!
On December 14th, as the sun was rising behind the City of Hope, my brother, Leason, had a quart of his bone marrow removed from his hips. To do this, Dr. P drilled a total of 6 holes in the back of his hips to retrieve the bone marrow. As the sun set later that same day, the precious life-saving marrow was transplanted into my body. Leason was able to recover enough from his surgery to come into my room and be there with me during the transplant. I felt so lucky that my brother was a perfect donor match. I was thinking about that day for so long leading up to it, and to watch his bright red bone marrow move through the clear IV tubing and enter my vein in my arm with him and my family there watching was one of the greatest experiences of my life. I’m happy he is almost fully recovered from his surgery. I will always be eternally grateful for my little bro.
You know how when you close your eyes and you can still see the pattern that the light has made, through your eyelids? Shortly after my transplant, I started falling asleep for short little bouts and saw what looked like millions of red dots flowing across my screen of vision… Jimi Hendrix, Transplant Haze.
Now onto the serious stuff….I’m bald. I have a strong affinity for the morphine button next to my bed. My mouth, throat, esophagus and stomach have been hacked up from my chemo, causing me an intense amount of pain. It basically looks like someone blasted a blowtorch down my throat, leaving me with many oozing sores. I am constantly coughing up a bloody mucous from these sores as well. Hence the acronym: CIDNFPAIIB = chemo is definitely not for pussies and is indescribably BRUTAL.
Other than that, there have been minimal complications. Many of the doctors and nurses around here refer to my transplant day, December 14th, as Day 0 and have different benchmarks I should be hitting from there. Today is Day 20, and my team told me that my transplant should ingraft to my bone marrow around Day 21, or January 4th. I got a nice early start! The next big hurdle I’ll be aiming to reach is Day 100, or March 17. I’ll be pretty much in the clear from any “graft vs. host,” or rejection complications. Celebratory green beers and gold chocolate coins are all “on Todd” this St. Paddy’s Day.
My daily routine mostly consists of hanging out with my family, watching movies and all of the recent college bowl games. My parents have two trivia games that I get to play each day as well. One of them is titled “A Little Less Hair and Proud of It” and I am given clues to guess show-biz people (and cartoon characters) lacking in the hair department. Speaking of which, Todd shaved his head as well as his sign of solidarity and love. The other game involves a charm bracelet my parents have started for me. I get a new charm each day and I’m given clues to guess what it is before they add it to the bracelet. Each charm has something to do with my life. Todd brought up every Christmas card as well as all the wonderful letters I’ve received, which I love.
I have a physical therapist visit me each day to help keep me in somewhat decent shape and help prevent my muscles from any major atrophying. I also have a mouth care regimen where a specialist comes into my room every four hours to help prevent any infections from starting in my chemo sores. One of the medications they give me for this resembles a peace pipe, at which point I invite all into my “hookah lounge”. Because of the current state of my mouth and throat, I’m not able to eat. I get all of my calories from a giant bag of yellow liquid that resembles urine through my PICC line. As you can probably recall from a previous blog, I couldn’t stand the low bacteria diet I was on during my previous 43 day stay at the hospital, so I’m a big fan of my new diet.
In addition to my mouth care medications and new bag o’ calories, I have an average of about 6 other meds going into my PICC line each day. These include different antibiotics, liver meds, blood pressure meds, and anti-fungal meds. The longest break I get to myself is about 2 hours during the night, as I have nurses continuously coming in to check my vitals, give me mouth care, do blood draws, and renew or change speeds on my IV meds.
I can’t believe I have already been here for 3 and one half weeks. I am so happy to have my family here and to hear from friends and my extended family each day. I love the blog and facebook posts too. My nurses and doctors have been truly amazing. I hope the rest of my stay goes just as smoothly, and I’m so stoked to start seeing some improvement from the transplant. My white blood cell count is currently 1.6 (up from a recent 0.0 – normal is between 4.0 -12.0)!!! I hope you all had a Merry Christmas, and here’s to a great 2013. I’m not exactly sure when I’ll be going home, but it looks like around 2 weeks from now.
Before I left for City of Hope I had Dora cut my ponytail off and give me a new pixie cut. I sent my ponytail to Locks for Love 🙂
JOSELYN'S BRAWL 
You are such a hero and an inspiration to us all!!! Keep on keepin on Jos!!! Praying for you all the time and thinking of you! Can’t wait until we can celebrate like the Irish for st pattys 😉 LOVE YOU
LikeLike
Jos,
So glad you are feeling up to writing again! There are no words to explain your bravery through this ordeal! I’m embarrassed that even in your state of turmoil, your Christmas card arrived and mine never went out! Know that I think of you every day and that the force is with you! TTF
Laura
LikeLike
As much as I looked forward to hearing from your mom it is truly great to hear from you once again…I knew good news was on its way!…keep on keeping on ..you will be home in no time. Sending prayers and hugs your way……
.
LikeLike
Please know we continue to pray for you, Todd, the kids and all involved. This was a great update and we look forward to you getting to go home soon. Love and prayers!
Corey Bauer
(Mike and Jean Casey’s daughter)
LikeLike
Jos, So glad to hear from you and happy to hear you are moving toward 100%. Our family speaks of you all the time. We are so impressed 🙂 Had a dream that we were out to dinner with you and you looked great! Wow!! We will be there for the green beer – can’t wait. Best to your family 🙂 Cinda
LikeLike
Think about you every day….so happy to hear the great news and know that soon you will be home…..you are mighty tough!
Keeping you in our prayers.cant wait to share a pitcher at EL PATIO…….
LikeLike
Hi Jos…Uncle Butch and I and our whole family are thrilled with the good news…we will continue to pray for your complete recovery…I bet you look like a flapper girl in the hats…so glad you are feeling a little better…and I know you will continue to with every passing day…you blog is extraordinary…wow…how do you do it??? It’s good to know that you feel like writing it again..love it…thank you…
Lots of love..Auntie Caryll XXOO
LikeLike
You amaze me Jos! I am honored just to know you. You are for sure the strongest woman I know!!! I just found out that your bro has kids at Arroyo. I am back there teaching after taking 16 years off to raise my kids. I look forward to meeting your hero when I get back to school. Take care, my friend. Jill
LikeLike
YESSSSSSSS!!!!!!! The blood counts are climbing!!!!!!!! Have been thinking of you daily still and Happy New Year because you’re going to be all better soon!!!!!!!!! Sending love, hugs, hope and peace!!! GO JOSELYN!!!!
LikeLike
Joselyn, I’m so glad to hear the transplant went well and your blood count is up! You and Leason are my heros. I continue to pray for your complete recovery. Fight on Jos!
LikeLike
Jos…U rock! Love seeing the pics of your hip hospital room…thank you for sharing, and even in your drug state you write with clarity and courage…!! 2013 is going to be a banner year for you and Todd and all the Miller/Pomeroy crew…keep bulls eyeing those big bad boys of health, because you are winning this fight for sure. Love, Ann GO TEAM JOS! Xoxoxox
LikeLike
You are an amazing inspiration Joselyn!
Keep up the good results.
St Patrick’s Day is the perfect way to celebrate!
Lots of love and prayers!
erin meyer
LikeLike
Hi Erin! I don’t have great email service here at the hospital, so I’m sending you a message this way 🙂 You have been unbelievable with your daily card delivery!!! You are so inspirational to me, and I am very grateful to you! Thanks again for your thoughtfulness.
Love, Jos ttf
LikeLike
Hi Joselyn!
No worries – just want you to know that I am thinking of you and I have enlisted lots of others to pray – even the Domers! No pressure, but when you are up to it, you and your incredible sense of humor need to get a funny get well card company going!
xoxo
erin
LikeLike
Oh Jos, it was so wonderful to hear from you on your blog! There isn’t a day that goes by that you aren’t in our thoughts and prayers. I have to admit, it doesn’t sound like a fun way to spend the holidays! But I am sure you had to feel the love! We all send you our love and hope the next 3 weeks speed by and continue to bring GOOD RESULTS!
We love you,
Gary and Nancy Pickett
LikeLike
Hi Jos, so glad to hear that your blood count is up and that you are back to your blogs. You have so many friends and family fighting for you, how could you lose? My prayers and thoughts are with you and here’s to a GREAT 2013. Love, Bonnie
LikeLike
Press that morphine button for me! Best wishes for the new year and I can’t wait to see you running around the world again. La Querencia, watchout!
LikeLike
Super exciting! You are in our thoughts and prayers.
LikeLike
Joselyn! Your brother is truly a hero, and you are truly the most amazing woman ever. Hang in there and get well and bring up that white blood count! Can’t wait for you to be back to your routine of just being wonderful YOU! NYLESOJ!! Praying for you! Did you watch “Matilda”? Either you thought it was really funny, or you thought I am a nut for saying that is my favorite movie….which one?? xoxo
LikeLike
You’re AWSOME JOS !!!!! May the force be with you !! Bear hugs and LOVE XXXXOOOO Aminatu
LikeLike
IBWW [Incredibly , Brave, Warrior, Woman} Wow you are an inspiration and I love you so much. Keep up the fight my beautiful Sister in Law. Even though i can’t be by your side i am with you in heart and spirit…
Love you,
Jennifer miller
LikeLike
Hi Jos
Thinking of you all the time… you and your family are an inspiration to all!
You have always amazed me, now even more than ever. Keep up the good work.
xoxo, your lil sis, Melanie
LikeLike
Jos, you are beyond inspirational and courageous…hugs to you, Todd, and your awesome Bro!!!
Keep up the fight!
Aloha,
Laughon
LikeLike
Joselyn, big day coming up…and a huge beautiful wonderful successful day! Morris family here…love you always beautiful one…you could never look “not so good” to us…..you are definitely my hero…always always always you and your family have made us laugh and given us great joy….you have touched lives and keep on touching lives….you my lovely Joselyn have made such a difference in so many lives….truly…..
Our love always…can’t wait to see you…and the Toddster..bald..man and that guy had a full gorgeous head of hair..I am jealous….
_____
From: Joselyn’s Brawl with Shulman’s Syndrome [mailto:comment-reply@wordpress.com] Sent: Thursday, January 03, 2013 2:16 PM To: dnjmorris@cox.net Subject: [New post] Transplant Time
joselynmiller posted: “I apologize for taking an exorbitant amount of time to get another post up, but I have been feeling rather sh*tty as of late. I am sitting here in a slightly morphine induced haze, trying to update you on the previous 5 weeks of my life. Here goes nothing”
LikeLike
Joselyn,
We have been so concerned about you that Todd almost got a call from us. I guess we should be on Facebook!?! Thank you thank you for your “newsy” and encouraging blog.
To all those who love you, which are many, how grateful we are that you reached out to us. And your amazing family…their love and commitment to your recovery is palpable. God bless them! Here’s to March 17th and all the green beer we can drink!
GO IRISH!
LikeLike
Dear Joselyn, Even in this trial you are an amazing inspiration to those around you, You are so blessed to have such a wonderful Family… You are truly Loved, keep up this courageous battle…Love and Prayers, Kathalleyne
LikeLike
Joselyn, I was so happy to read your update today! I think of you often, but I thought about you especially today when I was in a hospital waiting room while my son had surgery to fix his collar bone which he broke snow boarding last week. I thought about all the time you and your family have spent in the hospital and all you have gone through these past months. I started to check my emails and thought to myself, I’d really like to see a blog update from Joselyn telling us some good news about her! And not 2 minutes later your update appeared in my inbox! I’m so happy the transplant well! I know each day is a battle….. I applaud your heroic efforts to keep up your amazing positive attitude! I am sure those white blood cells will continue to multiply! As always, you are in my thoughts and prayers.
Love, Susie
LikeLike
That a girl, Jos, You keep fighting the good fight!! It is so good to see your blog entry so we can continue to follow all your victories! A New Year, a New you!! One day at a time. Always in our thoughts, Cookie, Pete, Sam and Tyler
LikeLike
Joselyn – So very happy to hear the bone marrow procedure was a success. We heard Leason was in the room and Todd showed up in a tux. Just further confirmation of how classy the Miller family is. We’re hoping the chemo is the low point of this whole battle and that you will be healed in record breaking time. We think of you and your family often. And not only are you one tough warrior chick – but you also managed to get out your beautiful Christmas card. How do you do it all??? You are truly amazing. This will be the luckiest and most festive St. Patricks ever! We have your name written across March 17th on our calendar. Oh – and like you, Elory just had 10+inches of hair cut off for Locks of Love. We talked about you being one of the brave people we know who has had chemo. Els said “She is the mom at the fish house”. So you even have adoring fans in elementary school.
Wishing you much love, Stacy, N8, Elory and Elias
LikeLike
Joselyn, you are absolutely amazing and you continue to be such an inspiration to everyone! Just keep hanging in there because you’ve certainly turned the corner and are coming down home stretch!
LikeLike
So glad to see an update and hear about your “journey.” I have no idea how you maintain your positive attitude and sense of humor but I have great admiration for it. Please know the Trojan family is on your team and thinking of you all the time. Be well. Kim West
LikeLike
Thanks for posting again, Jos…love and prayers from the Pavliks always. Fight On!
LikeLike
Amazing stuff Joselyn. So glad to see your post. 2013 will be good to you! Fight On girl. Love, Wendy, Bob, Curtis, Cory and Erin
PS Loved your Christmas card, your kids are beautiful.
LikeLike
Oh Jos, so glad to see you up and posting again! and what great news that things are progressing in the right direction. Billy and I were walking on New Years Day and we happened to run into Todd, where he told us that things were looking up… He said that he was dressed the way he was because he was on his way to see you and that he was going to do a little song and dance routine to celebrate, thus the orange shirt and yellow tie. He appologized for the funny out fit. And I said Todd, “that seems pretty normal for you” 🙂 Point being~ he seemed happy and that is a wonderful sign. keep getting better! You are amazing.
xoxoxo
LikeLike
We are thrilled beyond words….things are looking up, looking Irish, filled with millions of happy, healthy white blood cells, and wonderful, witty Joselyn posts!
Made our day to see you were feeling well enough to post. Thank you for sharing your experiences with all of us, you are AMAZING- Time to start planning the Happiest St. Paddy’s Day Celebration of ALL time. xo k&b
LikeLike
Way to RING in the New Year Jos….so glad to hear your counts are rising!!! I loved getting together with the BLAB girls and creating your “healing garland” for you! We will keep the tags coming when you need them…let me know. Thinking of you everyday and love that you donated your ponytail to Locks of Love! You as always are a giver and just an amazing person. Keep those counts rising girl and hope you’re keeping your head warm in this freezing weather!
XOXO, TTF, ENFU, Jae
LikeLike
Rockin’ 2013 already!! Such a champ 🙂
LikeLike
Man! That’s the best Christmas story I’ve heard!!
Loved hearing about all the games and the charm bracelet, you have a charming family…he he. Keep the good news coming and we can NOT wait to SEE you soon!
Love Love Love
LikeLike
Jos,
Thanks for the update! The Leason-Jos team is amazing! We are praying for you non-stop. You are so strong and we love you! Xoxo Gretchen, Dick, Piper and Hayley
P.S. Hayley leaves for Semester at Sea on Wednesday…due to you and Todd! We will relay any adventures to you! She is so excited but Mom is nervous…! Xoxo 🙂
Sent from my iPhone
LikeLike
Joselyn, I am hoping you are getting strength and pride from your incredible courage and spirit. It’s amazing what the body can endure when it must! So many friends and family members are thinking about you, sending you strength and so much love. I cannot wait to see your big smile and gorgeous hair again soon
With love, Pi Phi and every other kind!
Susan
LikeLike
Joselyn,
This is great news, and I cannot think of a better way to start of 2013.
Your growing number of white Blood Cells reminds me of “Horton Hears a Who”. “We are here, we are here”, unfortunately, they are not heard until JoJo joins in. Finally the animals of the jungle can hear, and vow to protect the tiny community. Thus “a person is a person, no matter how small”, and so is a cell. So go JoJo! We are all here for you.
Lastly, Mary, Kirk, Corey and Karen & Frank’s daughter are all going on SAS this spring. Let me or Sharon know if you have any tooth brushes you want them to deliver.
Cheers to 2013 and all of going on next year’s alumni cruise.
LikeLike
“All of us”
LikeLike
We are so glad to hear things are moving in the right direction. However, how you can write with any kind of humor is beyond me! You are made of strong stuff! I hope the days go quickly and you are home before you planned. Here’s to 2013! I know it will be one to celebrate. xo The Washers
LikeLike
Can’t describe how joyful and STOKED we are the your blood count is on the rise. We are crying with tears of happiness! The mouth sores and pain sound terrible, so keep the morphine going strong. Love you tons,
Scott and Robin
LikeLike
Jos,
Wow! Happy New Year! Good news! You amaze us! The Nerf darts and charms and morphine drip sound fun – the mouth sores and other stuff not so much. Thinking about you A LOT and sending you LOVE!
LikeLike
We are SO happy to hear the GOOD report of bumping UPWARD that GOOD blood count!! Keep it UP……
You are the bravest and strongest.
XOXO
K and D
LikeLike
Great news that your blood count is up..and long may it continue. Here is to a happy and healthy new year. xx
LikeLike
Happy New Year Jos! Great to hear your white blood count is RISING!!! Looking forward to your health improving each day! Keep up the positive outlook! You are the best!
Steve
LikeLike
Knew I could. Knew I could. Knew I could. And the little engine did just that! S3
LikeLike
Jos,
It is so great to hear from you! We are so happy to hear everything went well with you and Leason and it is wonderful to hear that your white blood cells are increasing. What an awesome thing he has done. Not to mention Todd and his support, what a neat surprise! We think of you and our whole family there every day. Hugs and kisses
Abra
LikeLike
I was so happy to see the post and have been thinking and praying for you daily. I’m so glad that things are progressing as planned and that you have the strength to write, play games, and visit with your family. Stay strong, positive, and keep up the good work. You’re so lucky to have your family and friends supporting you 110%… obviously you are an amazing wife, mom, daughter, sister, friend, etc.
LikeLike
Amazing, rare, extraordinary, outstanding, great, special, distinguished, prominent, important, note-worthy, awe-inspiring, awesome, unique, fine, unheard-of, superior, astonishing, amazing, prodigious, incredible, inconceivable, atypical, exceptional, eminent, significant, memorable, refreshing, singular, fabulous, unprecedented, unparalleled, unexampled, stupendous, wonderful, notable, superior, marvelous, striking, electrifying, fantastic, astounding, indescribable. These are the words that come to my mind on how to describe you! I know some of these words have been used in some of the comments before, but I wanted to capture them in one spot. However, words can’t describe how thrilled I am for you that your white blood count is climbing. Happy New Year!
LikeLike
So relieved to see your post & read the update. You’ve been through so much, I can’t imagine. Sounds like things r going well now, & i’m sure u will continue to improve. You are one tough cookie! Your entire family is so creative & so loving & giving, I see where u got your many talents. I’ve heard that sometimes your hair grows back totally different. I wonder how u will look with a blonde afro? Lots of love to you, my amazing friend. (XO…but only after your white count comes up a little more!)
LikeLike