Hope

City of Hope Main Entrance

HOPE – (Have Only Positive Expectations)

Friday was the best day in a long time.  We drove up to City of Hope in Duarte, where my Newport team of docs decided I need to be at this point.  Didn’t really know where the hell Duarte was previously, but we now have the route memorized and have our newest favorite Mexican hole in the wall (La Paloma) scouted out. Following our days spent at COH, we are planning to stuff ourselves with such specialties as buche, lengua y cabeza.  Or, we could go gringo with pollo.  Whether we choose stomach, tongue, brain or chicken, La Paloma will serve as our Bear Flag – North.  Thanks to some great friends (Tony, Jon, Harold and Blake), we received the VIP treatment at City of Hope, including a nice visit with the CEO and a personal concierge who gave us a tour and escorted us to each appointment.

I had AFBT (Another F-ing Blood Test) to start, where we learned that for the first time, my white blood cells were actually moving up (slightly, but we’ll take it).  Then we met with my newest team member, Dr. P (hematologist/cell transplantation), who could be Dwight Shrute’s cool twin brother.   We were so very impressed with him!  His brilliance, experience and compassion blew us away.  He spent 90 minutes with us laying out a game plan and answering ALL of Todd’s questions.  Our best case scenario is that the Cyclosporine will turn things around in the next few weeks.  If not, we’ll go to an intravenous infusion of ATG (Anti-thymocyte Globulin), where I would be hospitalized for 4 days at COH, so I could be monitored closely in a sterile environment.  This form of chemotherapy is horse or rabbit-derived anti bodies that work against human T-cells, and it is used in the treatment and prevention of bone marrow problems.  Not quite pig feces, but f-ing animalistic nonetheless 🙂  If ATG doesn’t work, there are other drugs that can be tried at this time.  If none of these drugs work, we would go with the last resort of a bone marrow transplant.

So this is my conversation with my brother, Leason, yesterday morning…

Me:  “Hi, how is Little League going?”

Leason:  “Great.  I’m going to coach again this year.”

Me:  “Cool.  I can’t wait to be able to come and watch.  Hey, can I have your bone marrow?”

Leason:   “Absolutely.  Anything.”

I have the greatest brother!  He will be tested in the next week to see if he is a match, which is a 25% chance.  If not, Dr. P will check the bone marrow donor registry, where there is a 50% chance of an immediate match.  He wants to get this in place now, in case we need it in the coming months.   A bone marrow transplant is quite an ordeal, including chemotherapy, a 4-12 week hospital stay, and many risks.  We hope we don’t get to this point.

Yesterday, I was back at my HAFH (Hoag Away From Home) for AFBT (Another F-ing Blood Test) and another platelet transfusion.  We learned that my white cell count is still moving upwards (slightly, but we’ll still take it).  My count has improved 50% in 3 days 🙂  My red cell counts and my platelets are still not cooperating, but my docs are most concerned about my white cells, because I would have potentially life threatening problems if I pick up an infection at this point.  White cells are the ones that fight infections, and mine are so low, they wouldn’t be able to put up much of a fight.  No floating like a butterfly, no stinging like a bee.  My red cells and platelets can be kept at artificial but “safe” levels with transfusions, while the white cells cannot.

My veins and I thankfully have today off, then I am going back to the Hoag Cancer Center tomorrow morning for yet AFBT (Another F-ing Blood Test), followed by platelet and/or blood transfusions, depending on my cell counts.   Tuesday I will meet with Dr. S1 (hematologist) and have yet AFBT (Jos, please don’t spell it out AGAIN).  I have an MRI of my thighs scheduled on Wednesday with Dr. G (neurologist) to see if there is still inflammation in my quads and to look at what is causing the considerable swelling of my muscle biopsy incision site.   HAFATS (Hematomas Are Fugly And They Suck), but we’re not sure that’s what this is anymore.  Thursday, I will leave bright and early to get to City of Hope to have, you guessed it, AFBT, followed by a second bone marrow biopsy, followed by a meeting with Dr. P, when he’ll share with us the feedback from the panel of specialists who are meeting on my case on Wednesday.

City of Hope is an amazing place, and we are confident that their expertise and knowledge will see me through this nightmare.

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).

48 thoughts on “Hope

  1. You never cease to amaze me with your strength and humor. My prayers are with you daily and would love to keep you company at your HAFH if you ever need it!! Keep fighting lovie!! k

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  2. OH baby! I have goose bumps! That is the brightest news we have heard from you yet! We will keep our fingers crossed! Can we be checked to see if we would be good bone marrow matches?

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  3. All I can say is WOW! You are amazing and a great writer too. Hope your #s continue to improve. I just happened to join The Bone Marrow Registry last week. Hopefully you won’t need me though. You are in our thoughts. Get well…

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  4. Thinking of you Jos…you are truly amazing and inspirational with your strength, attitude, and fight. The Bryant ohana send our island love to you and your awesome family. BTW, nice game yesterday…wish we could have made it a little more interesting. Aloha 😉

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  5. Hi Jos, I don’t know if you remember me, but I am Wendy’s sister Bonnie Perry Tichenor. We used to get together for family dinners when you and my two oldest sons were toddlers. You were so cute with the big bows in your hair. My boys, Bill and Randy, used to cry over you. They both said that they loved you and didn’t want the other involved. It was so cute to watch you play together. I have been reading your posts and am praying that good news is coming. You and your family are in our thoughts and prayers. Love, Bonnie

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  6. Know 2 things please Senora Miller:
    1. Praying for you on your journey to wellness
    2. You writing is great. I almost feel bad enjoying the writing, since the topic is your struggle.
    3. (sorry i know this is 3 things) we all miss you and todd.

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  7. TU (thumbs up) Joselyn, with up being the operative word. “Hey baby, I like that news. I really like that news. . . That’s your self confidence speaking.” Go for it Jos. S3

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  8. Buongiorno Jos:

    May I confess I anxiously wait to read your “brawl”? ….it may be hard to believe for you but you keep my spirit up…I have only known you barely a year so we have a lot of catch up to do in the future…holding you in my heart…Silvia

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  9. Hi Joselyn: I knew you had been in for tests, but until connecting with your blog I had NO idea what you are facing. Just give the word and I’ll get tested for bone marrow. I’m a big girl with big bones. I can spare whatever you need. I know I’m a universal blood donor – but of course that’s not the same thing but might be a good sign? Anything I can do long distance – just let me know. Do you have any dietary restrictions? Or can I send something fun? Thinking/sending all the strong positive thoughts possible. Keep swearing! keep fighting! Kick ass baby!
    Fondly,
    Karen

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  10. Jos, thank you for sharing your journey! We love you! I know you will keep a positive attitude and humor always helps in difficult times. Remember you have many love ones and friends. Your village is large and overwhelming with Love and support!
    Great news from City of Hope! I hate those AFBT’s

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  11. Thanks for all the support everyone! It means so much to me! As far as being checked to see if you are a bone marrow match for me ~ WOW! That is a truly AMAZING offer! My brother has a 25% chance of matching me, but even my children have no greater chance of matching me than anyone on the National Marrow Donor Program List. There are millions on that list, and I have a 50% chance of finding a match out of those millions. So, the chances of me matching one of my family members (other than my brother) or friends is very, very low. I greatly appreciate the offers more that you could know! If you are interested in learning more about the program, the website is: http://marrow.org/Home.aspx

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    1. Joselyn,
      You are truly one of the most beautiful ladies I have ever met. Your writing and
      humor are wonderful. Thank you for the explanations and helpful understanding of
      your illness and the journey you are on as you fight the battle back to a healthy
      body.
      Love to you and your family,
      Linda and Tony Ellis

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    2. I’m in the bonemarrow registry already. I’d gladly give u bone marrow, a kidney, some of my slightly sclerosed liver, an arm…Anything!!!

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    3. Hey Joselyn, great to hear the uplifting news about your platelets and the plan of action. BTW, my son’s fiance contracted AML a few years ago and had a bone marrow transplant at Stanford. The bone marrow registry is an awesome organization and we were able to hold a couple of bone marrow donor drives prior to her transplant. They found her a match through the registry and we are blessed to say that she is going on 3 years without a recurrence. It’s difficult to hear you speak of the similar procedures, etc., but please hang in there. You are so right when you speak of ‘HOPE’.

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  12. Joselyn,
    I admit to going from laughing to tearing up more than one time…considering the ‘ride’ you’ve been on. I’m just so amazed and in awe of your wonderful attitude and humor! Like you, I’m sure clinging hard to the latest good news! Was so happy to hear it…
    I agree with the others who’ve shared that YOU are inspiring ME right now! Your writing is amazing and filled with such a great life force!
    Love knowing you have some great docs on your team, too…

    Keeping you in prayer…and sending love your way!
    Linda…and always…the Ry guy, who you know adored you guys!

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  13. Hi Joselyn….You have such a great spirit and I am so sorry to hear what you are going through. Lots of love and prayers sent your way! I have a medal from my very Catholic grandma I keep with me and rub for very special times. It works!!! I will do this for you! I saw your son just pledged SAE at USC. My daughter Paige just transferred to USC and a Pi Phi. Good times and good memories 🙂 Take care!! xoxo

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  14. Hi Joselyn,
    As soon as you kick the ass of this strange illness, please start a new career as a writer. Your blog is amazing and so are you. Keep fighting and thank you for letting all of us share in this journey. Thinking of you and sending positive wishes your way each day.
    Lynn

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  15. Dear Jos, I just read all your posts at once since Todd posted your blog link to FB (Facebook). We have met through Todd along the way since i was kappa sig advisor when he joined the chapter and we have stayed in touch since. I admire your courage and attitude through all of this and glad to read in the last post that some of your numbers are finally going your way. Although I feel helpless in changing things for you, as I told Todd, anything in this world that is possible for me to do, the answer is yes. All the Bros are praying for continued better results and we stand overflowing with love and support as you navigate through the “alphabet soup” of your treatments and explitives! Prednisone et al, yuck!. Your sense of humor is amazing. Gotta love that. Bart

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  16. Hi Joselyn,
    So glad to hear the hopeful news. You continue to inspire me with your strength and courage. We are praying that the new team of doctors can help get you well. I hope this is just the start of more positive reports! Your blog is so witty and I agree you should become a writer!
    love, Terri

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  17. Doc and I are so happy you are going to COH. Some of the country’s brightest and best minds are there. My uncle was a huge fundraiser for their pediatric cancer center and of course he got all of us involved. It was through volunteerism we came to know of this institution’s excellence. Really it’s the best!
    Stay courageous! xxo Nettie

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  18. Love you and thinking of you all the time. So excited for Rex! Can’t wait to get our fams together soon! Lots of prayers and positive thoughts are coming your way from the behrle family.

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  19. Dear, dear Jos, You have always been a fighter! You fought hard to learn how to perfect a round-off back hand spring in your gymnastic class! ! You fought hard to be the first to earn ALL the badges in our Girl Scout troop – not to mention how hard you fought to sell the most cookies! And now, you are fighting hard to win this battle over this nasty Shulmans THING!!! (I can hardly say the word without gagging.) And, you will win!!! The Pomeroy’s are always winners! Won’t it be great to get back to the Rose Bowl, Vets and Irvine Valley Flea Markets! Just think of all the great little treasures that await us! I’m fighting right beside you, Joselyn! You are constantly in my prayers and in my heart! Your courage is remarkable! Mom

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  20. Just catching up on the last few blogs! I go from feeling sick, laughing at your humor and such admiration for your toughness. Reading this blog put a smile on my face 🙂 I was saying “Yes!” this is going to work. Keep the faith. You are truly amazing Joselyn!

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  21. I have been reading your blog, and all the comments from your friends and family, and you truly have a plethora of people who love you. Thank you so much for sharing all this with us. It is amazing how therapeutic it is to reach out to others, when you are feeling beaten down by it all. And by all means keep writing! You are really great at it! Love and prayers of support to you, Todd and your family. Cathy McNamara

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  22. It’s great to hear that white count is finally moving in the right direction. It’s also good to know you’re at the best facility for dealing with this. Stay positive, keep fighting, keep the faith, and keep blogging.

    Hi to Todd.

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  23. Hi Joselyn,

    This is Sara, Nick Clement’s wife. I know we have never met, but Nick sent me the link to your blog and now it is one of the two websites I have ever bookmarked:) I check it every day and every day, you absolutely amaze me. Nick has always told me how unbelievably awesome you and your family are and your Xmas cards every year have pretty much proven that, but this blog has blown my mind. You are just AMAZING! We are sending you ALL of our love from Colorado. You are in our thoughts every day.

    Love,
    Sara

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  24. Jos, Your approach and attitude are inspirational to all of us. Love you and think of you everyday! ttf ENFU xoKarona & Tuck 🙂

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  25. Thank God for City of Hope…they will take great care of you like they did for Butch…you are constantly on our minds and in our prayers. Lots of love, Caryll

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  26. Hi Joshua
    I am so glad to hear that it is working out at COH. There were a lot of prayers and well wishes for you this past weekend at the Calcutta. I am sure you will be getting a Global Grins report too. We love you and are in our prayers every day. Hank

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  27. Jos, your blog was very encouraging! We will continue to pray as always and thanks for the updates. We love you and Todd! Congrats on Rex and pledging the SAE house, too! Xoxo The Millers

    Sent from my iPhone

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  28. WOW! Jos – mom and dad filled me in this weekend on your situation and dad sent me your blog to keep me up to date. Love the Pomeroy humor – your writing is amazing and the way in which you are tackling this is truly inspiring. Sending lots of {{{HUGS}}} to you and Todd and the kids. XOXO

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  29. You are already aware of how I feel about your astonishing valiant spirit. You have inspired everyone who reads your blog. Everyone who knows you is proud to be a Joselyn Miller fan and we’re all cheering for you. So many people are pulling for you, Joselyn. So many people love and care about you and think about you every single day. You will defeat this Shulman’s, and your life will forever be enriched by the inner strength you have garnered to beat this disease. On the outside you’re this adorable, fun-loving, adventurous fashionista. But because of this illness, you’ve revealed to us all the essence of who you really are–tenacious, determined, fearless and uproariously funny. You’re facing this Shulman’s with a fierce competitiveness but with a loving grace as well. That’s an unlikely combination, but you’ve mastered it. We’re looking forward to continued HOPEful posts as we know they are soon to come–Cathy Kent

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  30. So proud of you. What a trooper…one day at a time”… Julie will try for the bone marrow match if neded. We are storming the xheavens for your recovery Asa love and hugs patti pete and julie

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  31. Hi Joselyn- I need to get on Facebook. Kelly just informed me about this blog. I am so sorry for what you are going through and I can’t believe Brad and I have not seen you and Todd at Hoag. He has been battling non- Hodgkins Lymphoma for the past 3 years. Recently in April he had to be hospitalized. We have made the trek to City of Hope as well. I always knew how creative and positive you were but, I have to say that writing is definitely something that you should be doing for a very long time! Your reactions, comments, and posts truly uplift me and I know the way you are responding to this will help soo many people. Tell Todd I have some easy recipes that meet the restrictions that you posted if he wants. I would be happy to make something and drop it by or send a recipe by email.
    Oh and I am so excited John and Rex are SAE pledges together!
    We will be praying for you.
    Love to all,
    Marilyn

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  32. WTF…and I you know what that stands for! I am so glad you’re at the City and you have a new restaurant and have figured out where Duarte is because I sure don’t know where the hell that is. I just hope everything works and NO Bone Marrow Transplant. Would offer mine up but it’s been chemoed already…so you wouldn’t want it. Leason is awesome! Thinking of you and can run you over whatever you need from the Mexican Restaurants in the Greater Costa Mesa ares of you need a need a taste of Mexico from my side of the Bay!
    JJ…your ENFU friend!

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  33. Dear Joselyn, Thank you for sharing your journey. I know everyone has already told you, but you are truly amazing. I love your humor and your approach to this whole thing. If there’s anyone that can fight this strange disease, it is YOU! Sending love and prayers you way. x Wanda

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  34. Hello Joselyn, your Dad emailed us, & I have just read all the blogs. Wow, I want YOU on MY Team if the future holds anything in store for our family! I have heard nothing but Positive Feedback from all who have experienced City of Hope. Mostly
    that they have Caring People who want you to get better. Also, that they have Approx. 300 Trials going on at any one time & are on the Cutting Edge of Medicine/Medical Research. Back to you, I know I met you some time ago although it was a brief intro. Your Father Designed the most Beautiful home (except for yours!!!), in Emerald Bay. Address, 112. If there was EVER a Tsunami in EB, 112 would be the Only one standing, (Except for Yours). We think the world of him & your Mother!!!
    Now, I have emailed your parents to ask about bringing Food. I make a Mean, AKA Bad Ass,” Steak Chili” Also, Bierocks. (German Food). Like a British Pasty only Better. Would love to make them for you, your family? Just say the word……..
    I have only Positive thoughts going your way today and every day til this F—— hiccup is past you. You are in my thoughts & Prayers. I am a grandmother of Three Princesses, I understand kids like you, although I have Never seen one with more Courage (you probably know how much YOUR attitude & determination helps ALL your Family members. You ROCK Girl! I truly LOVE your Spirit & envy it.
    Be Well………….Sherry

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  35. Hi Joselyn, Jennifer has been keeping us up to date with your progress. Like everyone says, you are amazing and you are giving us strength through your courage. We have had a few friends that have had a Bone Marrow transplant with good results.
    You are in our prayers and thoughts.
    Love, Sharon & Tom Jackson

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  36. Dear Joselyn,
    As said many times before me, your humor, strength and courage are astounding!
    I am sending the link to your Brawl to all my Yoga teacher friends who want to save the world – as an instruction manual on where to start. Humor, strength , courage, love. What a gift you are to all of us.

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