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Monday, July 5, 2010

The Stemmies are Coming! The Stemmies are Coming!

Hello Everyone :)

Mission Accomplished-------> Chemo and Stemmies have been delivered and infused!!! Here's a pictorial of my adventure here at City of Hope so far. Will write you additional details soon, as I am a bit exhausted from all the partying I've been doing here!!!

4th of July Celebration- IV-ers and Nurses gathered in the exclusive 6th floor lounge, enjoying the panoramic view of fireworks.  Patients luxuriated in an endless supply of IV cocktails while our amazing nurses provided us round the clock personalized mobile IV service! THEY ARE THE BEST! LOVE MY NURSES!!!

On our way to celebrate the 4th- Fawzia, Julie, Heather

Julie with fellow IV-ers enjoying the exclusive, membership-only Penthouse view fireworks

Julie with Nurse Heather extraordinaire, mobile IV service, holidays included with unlimited smiles

All hydrated up with my IV cocktails


JULY 5TH- STEM CELL INFUSION DAY!!!!
My millions of stem cells are specially delivered by picture-shy lab tech, partially thawed, then hooked up and infused- FAST!!!

Nurse Susan extraordinaire expertly facilitates my Stem Cell Transplant Infusion process! I lost count of the number of IV bags she hung and carefully monitored, making sure I don't have a crazy allergic reaction like I did when my Stemmies were harvested and collected!

HEARTFELT THANK YOUS TO MY AMAZING CARE TEAM today: Dr Sahebi, all my amazing nurses and nurse assistants, 6th floor staff members, food service members, sanitation team members, etc, here at CITY OF HOPE! SPECIAL THANKS TO EVERYONE THAT CAME IN ON THIS HOLIDAY WEEKEND TO BEGIN MY NEW LIFE, WITH A NEW IMMUNE SYSTEM, MINUS MYELOMA!

PS- I still have hair!!!

Thank you for reading and following my blog and for posting your super fun and supportive comments!
Loooooooooooooooooooove you all!!!! Julie x0x0x0x0x0


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12 comments:

  1. AnonymousJuly 05, 2010

    You are awesome Julie!!!
    Fondly,
    Chris Norton

    ReplyDelete
  2. Jennifer AbramsJuly 06, 2010

    Jule,

    Been trying to post a comment for a few days and have decided that this website doesn't like Firefox, so Explorer it is. So glad to hear that you still have your hair. Your I.V's and pumps are truly impressive, as is your ability to share and get through this. Those chemo nurses are truly awesome! It's uphill from here.

    Love,
    Jennifer

    ReplyDelete
  3. AnonymousJuly 06, 2010

    Julie, You are MY HERO !!!!!!!!!!!!!!!!! Thank you to your Care Team for taking such Good Care of you..... It is uphill one day at a time... And, you have hair -- That is truly Amazing !!! We love you Dear One and keep you in our thoughts and prayers! Keeping Jim and the family in our prayers as well. Stay Strong !!!

    Evelyn and Neel

    ReplyDelete
  4. AnonymousJuly 06, 2010

    WOW! You make the party at COH sound really awesome! I wish I were there to celebrate the way you did! Who can refuse unlimited IV Cocktails?!?! ;) You are truly amazing, kid! I have always said that you are my hero (as you are to Evelyn and Neel above) ... and now you know why! You are the sunshine of my life, Julie! You brighten my day with your words, even from COH!

    Thank goodness you are finally getting your new immune system (without Myeloma)! I'll make a sign for you "NO MYELOMA CELLS ALLOWED!!" I'll make sure to bold it too! :)

    Lots of love back!

    PS - TOTALLY awesome that you still have hair! kick chemos behind Julie!

    ReplyDelete
  5. Kelly Down the RoadJuly 07, 2010

    Your posts make me laugh and cry all at the same time! You are amazing. Hope you are doing o.k. today. I was in Baton Rouge visiting Bill for 4th of July. Your stay at COH is probably a couple steps up from Baton Rouge! Sounds like they are taking care of you there. Hair is fine, but if it comes out, you should wear a cute, leopard print cowboy hat with rhinestones! I would be happy to make you any kind of fun hat you want if you would like to wear one! Let me know. Love to you from the Phens.

    ReplyDelete
  6. ClaudiaJuly 07, 2010

    Hi Julie~
    I am so glad to hear that you were able to watch the fireworks at the penthouse as my mom would call it. lol. You have some tough hair it just wants to stay put!! whew!! lol I love the pics and you tell those nurses THANK YOU for taking such good care of my other "mommy."
    Love you mucho,
    Claudia and the gang :)
    P.S Alina's "Terrific two's" are driving me insane. :) :)
    P.S.S. Did you feel the earthquake today???
    P.S.S.S Go Stemmies...Go!!!!!

    ReplyDelete
  7. AnonymousJuly 08, 2010

    Hey Julie,

    What a pictorial and literary archive you are creating!!! You go girl. Always in my thoughts and prayers,
    XOXO Shawn

    ReplyDelete
  8. KristyJuly 08, 2010

    julie i love you
    keep up the positive attitude

    xoxo
    kristy

    ReplyDelete
  9. AnonymousJuly 08, 2010

    Hi Julie, Prayers and more prayers for you Dear One..... Each day is another day closer to recovery.... Stay Strong !!! Our Hero !!! We love you... Evelyn and Neel

    ReplyDelete
  10. UnknownJuly 08, 2010

    Radar,

    Your post today (actually on Monday the 5th) sounded like the final chapter of a WONDERFUL book! Surely there's more to come... Not that I wish more for you, but I'm holding my breath and not trying to sound too optimistic. When are you going home? Or are you home already?

    Whatever it is, I hope you can keep up this blog. It is sooooo inspiring for so many people! And life surely goes on after COH. What's next on your agenda? More tests? Probably... Sure would like to see a preview of coming attractions!

    You are beyond amazing, Julie! How lucky I am to have gotten to know you.

    A funny stuttering story: As you know I'm stuck here in Yuma, AZ, while my wife's broken ankle heals sufficiently for us to drive back to Dallas. In the meantime, the NSA Cleveland conference has started - without either of us! How can they do that? Ha, ha, ha!

    Anyway, I have temporarily joined a really cool Toastmaster club here in Yuma and I gave a speech last night mainly about my stuttering and how I wound up joining Toastmasters. And would you believe the Toastmaster of the Evening stuttered too! Small world! He's a super nice guy, married to an SLP, and we're gonna get together next week to just visit. I told him about the NSA and the Ft. Worth conference next summer. There's a silver lining to every cloud, isn't there? :)

    Love you Julie! Say hi to Jim and Alissa too!

    Russ

    ReplyDelete
  11. AnonymousJuly 08, 2010

    Julie,

    You are amazing. You are so brave~ Thank you for keeping us all posted, and I'm praying for your health, healing and feeling good.

    Miss you Julie!

    Nairy

    ReplyDelete
  12. Glenna RaeJuly 12, 2010

    Julie,

    I have spent this morning reading your blog and the loving comments from sweet friends and family as well as reading up on MM & Stem cell transplants. I have always adored you but you have jumped way up on my chart of admiration for you. I am amazed at your strength, courage, endurance,and still keeping your wonderful sense of humor. I have really enjoyed reading your blog and having you share your journey with us. You are in my prayers, dear friend....you go girl!!

    Love you tons,
    Glenna Rae

    ReplyDelete

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My Story... How my MM was diagnosed

October/November/December 2009...

Most of my life I was VERY presumptuous about being healthy, taking my (mostly) GOOD health for granted...
I was committed to annual check-ups for all of us, and so late October 2009, my daughter and I went for our annual and very routine physicals.

Surprise, surprise... my routine blood tests revealed extreme Anemia, significant White and Red Cell issues, low Platelets, and a variety of other CBC red flags! I was (stupidly) not worried when my GP doc left repeated phone messages to contact him, and when we did speak, I (stupidly) requested postponement of his referral appointment to the Hematology Dept until the end of the Fall academic term.

Arriving for my first appointment Dec 14, 2009, I was confronted with the check-in sign that read: "Hematology/Oncology"... What? Nooooo! not me... I must be in the WRONG place! And so my diagnosis journey began with vials and vials of blood drawn "stat", urgent Dr consultations, a surprise and painful Bone Marrow Biopsy, a full body Skeletal Scan, more blood tests stat, and then on 12.30.2009... THE revealing meeting... the "huh-what" moment ... the confirmation diagnosis that I, Julie, have CANCER!!!

Happy New Year to me, I just learned a new vocabulary word:
Multiple Myeloma!!! MM, Multiple Mye-what-loma!!!

January - June 2010

My medical metamorphosis began.
I read, and read, and read and researched and researched MM. I trusted my expert Oncology/Hematology team's plan and began my "New Normal" as a cancer patient.
My treatment plan was developed to include powerful Dexemthesone steroids paired with Revlimid chemotherapy, with the plan to be hospitalized for an Autologous Stem Cell Transplant July 2010.

I began living "one day at a time" like never before.
Jim was a wreck. Alissa and Scott were stunned; family and friends shocked.

Me... Cowgirl Up! I got back in the saddle and knew I was in for the ride of my life!
I did well on my initial pill-form Revlimid Chemo, "roid-rage" Dex Steroids and other supportive meds. I am forever deeply grateful and appreciative for all the love and support from everyone in my personal and professional life! I thank all of you for working along with me, and allowing me to continue to lead a semi "normal" life!
YOU have helped save my life!

My treatment trail ride forks to City of Hope hospital as I will saddle up beginning June 9, 2010 for a new rodeo called an Autologous Stem Cell Transplant!
Ye-Ha, let the adventure begin!

Chemical Warfare...

January 2010 - May 2010:
My initial chemo regimen:

Pill form Chemo= Revlimid (10mg, 15mg capsules)
Pill form Dexamethasone Steroids (40 mg, 4 days on, 4 days off!
Omeprazole for steroid acid reflux
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12
.81 Aspirin to prevent DVT, Revlimid complications
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral

June 2010:
High dose IV Cytoxan chemo
Neupogen to build up stem cells for Apheresis, stem cell harvest, which was very successful, as City of Hope was able to collect 9.5 million of my own stem cells

July 2010 Hospitalization:
Two days of high dose Melphalan chemo
Then July 5, 2010 = my Autologous Stem Cell transplant infusion!

And you can read my whole story from that point forward in this blog!


What is multiple myeloma?

What is multiple myeloma?

Cancer starts when cells in the body begin to grow out of control. Cells in nearly any part of the body can become cancer, and can spread to other areas of the body. To learn more about how cancers start and spread, see What Is Cancer?

Multiple myeloma is a cancer formed by malignant plasma cells. Normal plasma cells are found in the bone marrow and are an important part of the immune system.

The immune system is made up of several types of cells that work together to fight infections and other diseases. Lymphocytes (lymph cells) are the main cell type of the immune system. The major types of lymphocytes are T cells and B cells.

When B cells respond to an infection, they mature and change into plasma cells. Plasma cells make the antibodies (also called immunoglobulins) that help the body attack and kill germs. Lymphocytes are in many areas of the body, such as lymph nodes, the bone marrow, the intestines, and the bloodstream. Plasma cells, however, are mainly found in the bone marrow. Bone marrow is the soft tissue inside some hollow bones. In addition to plasma cells, normal bone marrow has cells that make the different normal blood cells.

When plasma cells become cancerous and grow out of control, they can produce a tumor called a plasmacytoma. These tumors generally develop in a bone, but they are also rarely found in other tissues. If someone has only a single plasma cell tumor, the disease is called an isolated (or solitary) plasmacytoma. If someone has more than one plasmacytoma, they have multiple myeloma.

Multiple myeloma is characterized by several features, including:

Low blood counts

In multiple myeloma, the overgrowth of plasma cells in the bone marrow can crowd out normal blood-forming cells, leading to low blood counts. This can cause anemia – a shortage of red blood cells. People with anemia become pale, weak, and fatigued. Multiple myeloma can also cause the level of platelets in the blood to become low (called thrombocytopenia). This can lead to increased bleeding and bruising. Another condition that can develop is leukopenia – a shortage of normal white blood cells. This can lead to problems fighting infections.

Bone and calcium problems

Myeloma cells also interfere with cells that help keep the bones strong. Bones are constantly being remade to keep them strong. Two major kinds of bone cells normally work together to keep bones healthy and strong. The cells that lay down new bone are called osteoblasts. The cells that break down old bone are called osteoclasts. Myeloma cells make a substance that tells the osteoclasts to speed up dissolving the bone. Since the osteoblasts do not get a signal to put down new bone, old bone is broken down without new bone to replace it. This makes the bones weak and they break easily. Fractured bones are a major problem in people with myeloma. This increase in bone break-down can also raise calcium levels in the blood. (Problems caused by high calcium levels are discussed in the section “How is multiple myeloma diagnosed?”)

Infections

Abnormal plasma cells do not protect the body from infections. As mentioned before, normal plasma cells produce antibodies that attack germs. For example, if you developed pneumonia, normal plasma cells would produce antibodies aimed at the specific bacteria that were causing the illness. These antibodies help the body attack and kill the bacteria. In multiple myeloma, the myeloma cells crowd out the normal plasma cells, so that antibodies to fight the infection can’t be made. The antibody made by the myeloma cells does not help fight infections. That’s because the myeloma cells are just many copies of the same plasma cell – all making copies of the same exact (or monoclonal) antibody.

Kidney problems

The antibody made by myeloma cells can harm the kidneys. This can lead to kidney damage and even kidney failure.