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

Friday, July 9, 2010

Not the Julie you used to know...

Hello Loyal Blog Followers...

Sorry I have been absent... but I'm sure you've put 2 + 2 together... to get that I am not my super energizer self anymore... Lots of wonderful stories for you, lots of wonderful people... as a matter of fact... an upcoming blog title will be "The Parade of Professionals"... as i have so many many wonderful people taking care of me and visiting me daily... wonderful Drs, RNs, PCA's, Physical Therapists, Occupational Therapists, Recreational Therapists... they even have me (trying to) exercise in bed and I was trying to Wii at the little on-floor gym, but I don't have the energy for that anymore...

But for now... honestly... I am very tired, fatigued, mentally and physically drained... don't know if I am starving or nauseous; longing for my ol routine... and for of all of you in my life... longing for the view from my own house and yard... longing for the the days gone by... where cancer, myeloma and medical concerns were not in my vocabulary and not the center of my universe and not my moment by moment routine ... I'm going down hill fast... the crash is coming... hopefully my stemmies will pull me through...

Jim and Alissa visiting me

The last time I made it out of my room
to walk them to the elevator...

Here's info on what I am going through, for those of you that would like to read the medical details.
Thank you as always for your loving, supportive, inspiring, uplifting and amazing comments. Love to you all!
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21 comments:

  1. UnknownJuly 09, 2010

    Radar,

    You are beyond amazing! I know you're not feeling up to par now, but this too shall pass. Hang in there, Kiddo! Your fans are right there with you! You are NOT alone!

    Keep thinking Ft. Worth next summer!

    Love,

    Russ

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  2. ClaudiaJuly 09, 2010

    Hi Julie~
    Thank you for updating us although you are not feeling so "hot" for the lack of a better word... We understand that you are going to be under the weather sometimes but you are the biggest trooper I know, soooo in Yo Gabba Gabba terms...(alina's tv show) "keep trying, keep trying don't give up." LOL Sorry this is what happens when you have a two year old around day and night. :) hope this puts a smile on your face. Goodnight!
    xoxoxoxo,
    Claudia and the gang

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  3. AnonymousJuly 10, 2010

    Look at your IV stand - all that stuff at the same time - how greedy are you! Keep on, keeping on!

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  4. AnonymousJuly 10, 2010

    Jules, you have been doing so well and it won't be long before your new cells will take charge and you'll be feeling better. Keep your chin up and know that there are sooo many of us here praying for you, Jim and the kids.
    Here's a joke for today...
    One day, Joe, Bob and Dave were hiking in a wilderness area when they came upon a large, raging, violent river. They needed to get to the other side, but had no idea of how to do so. Joe prayed to God, saying, “Please God, give me the strength to cross this river.” Poof! God gave him big arms and strong legs, and he was able to swim across the river in about two hours, although he almost drowned a couple of times. Seeing this, Dave prayed to God, saying, “Please God, give me the strength and the tools to cross this river.” Poof! God gave him a rowboat and he was able to row across the river in about an hour, after almost capsizing the boat a couple of times. Bob had seen how this worked out for the other two, so he also prayed to God saying, “Please God, give me the strength and the tools, and the intelligence, to cross this river.” Poof! God turned him into a woman. She looked at the map, hiked upstream a couple of hundred yards, then walked across the bridge.
    xoxo Sending a hug and (mask covered) kisss! Linda

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  5. AnonymousJuly 10, 2010

    Julie, "Our Hero" Each day brings you one day closer to recovery. Honest, that Yuky feeling of starving and naused at the same time does go away. Stay Strong Dear One. You are Loved by many !!! Lots of prayers are surronding you, Jim and the kids as well.

    Evelyn and Neel

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  6. AnonymousJuly 10, 2010

    Hi Julie!! You're doing so great...and you still have hair! Hang in there, you're almost over the worst of it...half way to health & home.
    Sending hugs & prayers, Sally

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  7. Kelly Down the RoadJuly 10, 2010

    Thinking of you, girl! We knew it would get more difficult and we also know how strong and determined you are. Keep that positivity and attitude. If a little downer sneaks in that is o.k. and understandable. Don't let it stay for long. Keep up the strength and good work. Hugs from down the road :)

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  8. Carol RamnarineJuly 11, 2010

    Dear Julie

    You are definitely on a life changing course of a new energizing self.

    Its right around the corner. You will be getting home and surround yourself with familiar things in the near future.

    I know all the words we have shared about MM have become your own first hand experience.

    It is great you are more then half-way through this and on your way to remission.

    Keep that positive attitude. You are most certainly entitled to be tired and do not hesitate to call upon family or friends to do anything to assist you. You can guide your caregivers best with your own words. Otherwise we tend to make the our choice not yours.

    Home awaits you soon. Smile! I am proud of you. I know this is not easy. My best to your family.

    Much Regards and Continued Prayers for you.
    Carol Ramnarine. MM Survivor

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  9. Graz'sJuly 11, 2010

    Hi Jules,

    We're so glad to hear from you. Got to spend a little time with Jim catching up. You are amazing. He told us about your room with a view, not the same as a horse kiss, but better than an industrial garage. You're through another step on the way to getting home. Keep your spirits up, and eat some of the treats Jim brings. Glad to hear that you have so many great caregivers. Keep them on their toes.

    We love you ~ Graz's

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  10. AnonymousJuly 11, 2010

    Julie, Julie, Julie … I think it’s impossible for you to be anyone other than the Julie we all know and love. You’re amazing attitude and positivity will help you (and me) get through this rough time. I mention me too because it’s true – I told you what an emotional mess I am every since you gave me the news. Yet, you made everything better, with your words and your personality! You even let me be a part of your crazy adventures where Nurse Jan met you for your Stem Cell Harvest shots. You were out and about a day or two after your first round of chemo – I am still shocked at that! You are the strongest person I know Julie! Keep on your path to remission! It may seem hard now, especially with what you’re going through at this time, but you taught me that you have the ultimate control. Cancer is a part of you, not the other way around. You didn’t let cancer take over your life back in January and I know that you won’t let it take over now!

    Remember that we all love and care about you so much, especially me! :)

    Millions and trillions of xoxo’s to the greatest adoptive mom ever! Miss you dearly!

    Rach

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  11. AnonymousJuly 11, 2010

    Remembering one of our favorite stories we use to read the boys..."I THINK I CAN, I THINK I CAN, I THINK I CAN"... soon we will here,,,"I KNOW I CAN, I KNOW I CAN, I KNEW I COULD"!! I is almost over lil'sis. I KNOW YOU CAN,,,WE KNOW YOU CAN!!!!! You are the light in sooo many candles my friend. We are soo very proud of you, your courage, your fierce attach to this monster. Keep on fighting....we are all right there behind you to hold you up. my love always...your "big sis" ps,,all looks well from over the fence. Even saw Scott scooping up horse p_ _ _ ! I had to look again just to make sure that it was actually Scott.

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  12. Leslie C.July 12, 2010

    Love you Julie! Keep fighting! You are a true inspiration to us all! We miss you so much at COC!
    Love,
    Leslie xo

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  13. AnonymousJuly 12, 2010

    Thought I would fill you in on my day...Gardened for 7 hours this morning..and most of that was in the company of Buddy 3 and Tucker back to back. I think they were on guard to make sure that pesty gopher /vole/mole or what ever it is..did not come back. Lucky it didn't,,cuz they would have witnessed one crazy woman attacking the thing like no other!!! So far, the "garden angels" are working hard to protect my garden this year. Only had to plant it once...but I sure am knocking on wood (no, not my heat). Will have baskets of eggplant, 3 different squashes, tomatoes, green beans, cucumbers,,,and many herbs waiting for you when you come home. :)
    Love to you, Sharon Ann

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  14. AnonymousJuly 13, 2010

    Julie, "Our Hero" and the most amazing lady I know! Many prayers are with you... Stay Strong!!!! One day at a time you are almost there. Even my children and Grandchildren are praying for you...... God is hearing "our prayers"........ You are Loved Dear One.

    Evelyn and Neel

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  15. Lynne LoweJuly 14, 2010

    Julie - Bless your heart. I've enjoyed reading your page and your attitude is so wonderful and positive. Please know that I am praying for you and your full recovery. And you are missed here at COC!

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  16. AnonymousJuly 15, 2010

    Hi Julie,
    We are so glad that you are surrounded by such caring and competent professionals and look forward to hearing about them, but, for now, please know that we are wishing you only the very best and know that these yucky times will pass eventually for you. Your courage and strength are an inspiration to all of us and will help you get through even these yucky times. Send our love to Jim, Alyssa and Scott. We think of all of you everyday and can hardly wait for your return to COC and the CCC!
    Love, Joan and Julie J.

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  17. Jennifer AbramsJuly 17, 2010

    Julie, I know you are probably feeling really crappy, and very few people know how crappy. You haven't posted for a few days now and I so hope that means you are concentrating on healing and resting. I think about you every day and I'm sending all my most positive thoughts your way. Life is sweeter on the other side of this junk, and you are almost there!

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  18. AnonymousJuly 17, 2010

    Hi Julie,
    You are amazing in so many ways!!! Please know that we Jacobsens are praying for you daily. Hang in there, you can do this!!! We love you very much!!!!! Jen

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  19. AnonymousJuly 18, 2010

    I know you'r still feeling worse than awful, but you're very close to feeling SO MUCH BETTER! You're obviously loved by very many on this blog who are praying for you & giving you strength. Keep up the fight...we'll see a sunny blog one day soon. (Or have Jim give an update.)
    XXXOOOXXX
    Sally

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  20. AnonymousJuly 18, 2010

    Mrs. Julie!
    I'm sorry you don't feel well but this means its working! Got to nip it in the bud before it knows to butt out right!?Tomorrow will be better...tomorrow is always better. Keeping in you in mind.
    -Brittany Reimann

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  21. AnonymousJuly 19, 2010

    Julie, Thinking of you! The path may still be bumpy But you are on the road to recovery.... Each day you will be Stronger and Stronger. Many people are praying for you, Jim, and the rest of the family. You are Loved....

    Evelyn and Neel

    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.