Cowgirl Up!!! ... Does Horse Poop Cause Cancer??

Thursday, August 5, 2010

UPdate

Hello Everyone- yes things are looking UP for me... day at a time I am feeling a bit more like me ... I still sleep a lot, force myself to eat and drink... a lot LOOKS AND SOUNDS appealing... just don't have much appetite.. brb... need to hydrate... anyone want to bring me IN n OUT??? hahahaha just kidding!!!!!

Here's the Headlines:

Still on several antibiotics... home infusion is so interesting and I have great home health care nurse :)
Still have my crazy Hickman infection, but so much better... just ask Alissa... she saw it at it's WORST!
Don't do much interesting and am entertained by the simplest things... you don't want to know how much TV I now watch LOL
Can't imagine me doing my pre-diagnosis life... hmmm... who will I become in 2011???
I actually miss doing my animal "chores"... but I am accepting it will be a while before I can safely do ANYTHING...
Miss COC a lot and all my wonderful colleagues... but can't imagine doing what I used to do...
Miss hanging out with all of you and being NORMAL... hahahaha, if that is what I was before...
Miss feeling well... I think this whole ordeal was so challenging for me because I was so HEALTHY for most of my life...
If I had been sickly most of my life ... perhaps it would have just been another speed bump???
Love hearing of everyone's exciting adventures, trips, goals, plans, etc... but makes me think about my changed future... what will I be able to do????
OK, enough of this...

Perhaps visitors soon????? :) You must be 1000% healthy and not exposed to anyone... but WARNING... I'm really not that much fun and may fall asleep while you're visiting me!

THANK YOU AGAIN AND AGAIN AND AGAIN FOR YOUR WONDERFUL COMMENTS. Please know how much they mean to me, and for those of you who have been down this road, your advice is invaluable to me. I love you all and please know your comments and you staying in touch with me all throughout June, July and now August has helped save my life!

Big sanitized hugs to all of you!!!!
And on a happy note:

HAPPY ONE YEAR BIRTHDAY TO PAWS, AUG 6 !
(am I remembering correctly Terri, Dan and Doggie Clan?)

18 comments:

  1. Jennifer AbramsAugust 06, 2010

    Julie,

    I was so happy to read that you are feeling better, and it's so normal to feel disconnected and kind of like you are observing life. Even though I'm pretty much back to normal (except that now my hair is weirdly curly), I tend to think in terms of "before" and "after". I guess you have no choice unless you completely block it all out, which isn't possible!

    I think about you every day, and I know that you will continue to be strong as you get better. When you feel like you can handle caring about the hair issue, I can make some recommendations that really work-Latisse for your lashes and eybrows and Ovation Cell Therapy for your hair. Yours was far thicker and nicer than mine before, and it will be again, believe me. This stuff helps, and helps to feel normal quicker.

    Sending beautiful thoughts and hugs,
    Jennifer

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  2. Hey Julie! I am so happy you are doing so well! I think about you every day and anxiously await to read your updated blog. Take good care and know that all of your COC family are missing you and praying for good health and happiness for you! Love ya, Leslie C.

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  3. Hi Julie! Glad to see you are doing better. I am constantly thinking of you and hoping to see you soon. I completely understand the cooties thingy being that i went through the same thing with Madelyn in the NICU and following procedures for home. Take good care my lil' preemie. Love you lots!

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  4. Hey Jules,

    You and Baby Emily have so much in common already. She falls asleep while people are visiting too. :)
    I'm so glad that you are doing better. Miss you lots. Can't wait to see you again. Love reading your updates. Kim and I think of you daily and pray that each day gets better and better for you. Love ya. Claudia, Kim and Emily Rose.

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  5. Kelly Down the RoadAugust 06, 2010

    Here is an idea...have Jim move a nice, comfy chair or couch near a window and have a "walk-up window for visiters" That way you won't be taking any chances with germy people in your house. I think it may work....let me know when you are ready to give it a go!

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  6. Hi Julie,
    Yes I am glad you are feeling better each day. I can imagine how you feel being healthy and active then sick...hang in there, you are building your strength back up. So glad your infection is moving OUT! I am looking forward to visiting you soon. Thanks for your posts even when you are not feeling well.
    Love, miss and thinking of you everyday.
    Jan

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  7. Happy Birthday Paws! Now the important thing is out of the way I'm going to say something odd - I found that because I'd been a bit rough during my SCT holiday when I did start to feel betterer I appreciated it more.

    I KNOW it can be frustrating realising there are things you'll never do, I'll never be able to run a marathon for example, I never wanted to mind, but if I had I could have done, now because of my MM it's inadvisable to run for a bus - so the potential to run a marathon has gone! BUT I don't now need to run for a bus because I learned to drive!

    Very warm wishes and don't let the myeloma ground you down! ;D

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  8. Hi Julie,
    Glad to know things are looking up....one day at a time is the BEST way to navigate through life.

    Miss your smiling face in the canyon and look forward to seeing you soon. I will refrain until you are feeling a bit better as I don't want to take any chances of passing and germies your way.

    Just know you are so often in my thoughts and prayers. Many people (my friends and family) ask about you frequently.

    That port infection must have been something else if it's still bugging you. I hope it's cleared up really soon.

    If there's anything you need,please let me know. I can drop it off without coming in.

    Hugs to yo and the family.
    Shawn

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  9. Hi Julie, I'm figuring out I am blog-posting challenged so if this is a duplicate I'm sorry.

    Anyway, I'm so glad to hear you're in your own home and starting to feel better. I miss you at COC. I just LOVE to follow your blog. I imagine besides being informative and entertaining, it is somewhat therapeutic for you. I'm looking forward to coming for a visit when you give the go ahead. With love and prayers, Gay

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  10. Hey Radar!

    I'm soooo glad you're feeling better! As several of your friends on here have said, it DOES get better! See? They were right!

    Stachia and I finally were able to bite the bullet and drive the three day 1200 mile journey home from Yuma, Arizona, last week. As YOU said, it's good to be home!!! Her broken ankle is still broken (duh!), but it's healing up pretty well on a s-l-o-w schedule. She's still in a wheelchair 90% of the time, but she's in a walking boot now and we're starting to see the light at the end of the tunnel. Whew!

    I am continually amazed at how you are able to keep up with this blog. You are such an amazing writer! And under such unbelievable circumstances too! All of us who follow your blog are soooo lucky to even know you!

    I've been tempted to email you, but maybe this blog is the best way to keep in touch. Let me know which you'd prefer.

    The NSA conference is in Ft. Worth next summer and I expect you here, young lady!!!

    Keep in touch! I read your blog often! Each day you will feel better and better...!

    Love,

    Russ

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  11. Dear Julie,

    It's good you are back home surrounded by the people and animals you love... and thank heavens for home health providers. Although you had a wonderful team of professionals at COH, it must be nice to be back in the comfort of your own beautiful home.

    Let me know when you install the "walk-up window in your house and we can parade through to chat with you through a microphone. (Hum... sounds familiar? Think CCC originally!)

    Thanks for the updates. It's comforting to read your blog and know that you are making progress.

    Thinking of you daily,
    Edel

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  12. Dear Julie,
    You are such a stellar role model for all of us. I am so in awe of you!!!! Always have been and always will be one of your biggest fans.
    All my love and prayers,
    Beryl

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  13. Julie!
    So glad to hear your first week home has been a positive experience. I L-O-V-E Kelly's idea of the "walk-up window for visitors"! You can even keep the window shut and we can use dixie cups or cell phones (provided we each learn how to operate our new phones) to communicate lol. I didn't get Michelle's cold but will wait a few more days to not take any chances and be SURE. If you want a walk up window guinea pig, I'm your customer! Maybe we can incorporate a visit with a new phone training session where we both learn how to use our new devices with an on-site technology educator :) It could be like an informal COC class!

    Continue to feel better, my friend, and I hope to see you soon. Love and (germ free) hugs from the crew! Lori

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  14. Julie,

    You are so amazing. I have seen and met people who have been in your situation and don't pull through. They give up, but once in a while you have people like yourself keeping strong and the fact that you still have a sense of humor about it, truly speaks of your character. For you, to take time and try to keep your friends in the loop and trying to keep our spirits up about your progress... well, I can't even being to tell you how much of an inspiration you are to me. You are missed greatly.
    FYI... Don't watch Jersey Shore.

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  15. Julie,,,we are thrilled to hear of your positive results!! Keep those white cells coming,,,and creepy germmies away I say!!!! And,HAPPY to hear that there have actually been sightings of you drinking & eating. This is a good/great thing. Hows the painting coming??? Expect to see it hanging on the wall some time this year, ;)
    lol..Im laughing at Kelli & Lori- I had this mental picture of us coming up to the window and grabbing a funnel connected to a hose that leads thru the closed window where at the opposite end of this hose is another funnel. Sounds like a fun experiment. Let me know when you have it all hooked up..and we will form a line.

    Thank you for your continued reports. I find comfort hearing your sense of humor, high spirits, and relentless determination. YOU GO GIRL...YOU ARE OUR HERO!!!!!!!!!!!!!
    Love to you, with Cyber Hugs...Sharon

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  16. Julie, You are our hero indeed.......... We are so thankful you are doing so well. Each day you will get stronger and stronger. Like Sharon said Thank you for keepin us updated on your recovery. Your sense of humor and strength is truly amazing..... Just take one day at a time. You are and will always be the precious person you are. Touching those around you with your care and concern. Maybe a bit slower but that's alright. You, Dear One have been through a lot.

    You and the rest of the family are in our thoughts and prayers. Stay Strong and know you are Loved by many..............

    Neel and Evelyn

    PS. I am one of those you touched and changed my life in a mighty way....

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  17. From Ashley the Pony's mom:

    Hi Julie! We are so relieved you are back home and that this is behind you now rather than in front of you. I may leave Ashley the Pony at home but would love to come visit you when you are up to it. Would you like me to drop off some People Magazines?

    Happy trails and hugs to you!

    Ashley, Linda, Ric, Athena and Buford the Bassets and the horses...

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  18. Julie,I am really glad you are feeling better.
    Funny how basic things like looking after your
    animals can look so good when you have not been
    doing it.Anyway I am looking forward to hearing
    of you doing that and going on your boat in Havasu.Did a tax today for someone who bought a
    house there.Keep going slow and healing.

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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 capsules)
Pill form Dexamethasone Steroids (40 mg!) paired with Omeprazole
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12- to build those cells!
.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.