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

Sunday, November 18, 2018

Feeling Like Glass

11.18.18

Happy almost Thanksgiving everyone!

Thank you for all your kind comments, emails, texts, calls of support. Yes, body betrayal, no matter the disease, is so very tragic. My heart and head just hurts so much from everything we are going through, and for everyone else with Unwanted challenges.

I used to feel so strong, and had a sense of control over my life, choices, decisions, actions/consequences. I was so very careful and cautious with most all the choices I made in my life. I never had that need for an adrenaline rush, extreme sports, heart racing type activities or challenges. I've always sought peace, happiness, serenity, calm, fun and mental and physical health for me, everyone. My life long career as a Counselor, only solidified my natural ability to help, heal, change, that which was affecting me, mine and those that sought my counsel. Now, life is a wild ride, emotionally and physically, with little prediction of what each day holds, and little ability to affect needed change. I tell myself all the time... "It is what it is"... "You cannot control the things you cannot control" ....  Accept. Understand. It's the disease. It's body betrayal. Move Forward. Let it go. Breathe. Breathe deeply. But then I think of all the suffering of humans and animals in the world, and I admonish myself for my frustrations, grumblings, and sadness.... Onward Julie...
Saw this too late to order! 

Yes, Thanksgiving day is also my Birthday. Such a milestone for me. I was 50 at diagnosis, December 30, 2009. My doctor apologized when delivering the news, saying "I was so young". "Most are diagnosed later in life"... "and you're high risk", "with an "aggressive" type of Myeloma"... I understood intellectually, but psychologically, denial became my middle name. I knew the terminal, incurable facts about Myeloma, but of course I was smug enough to "assume" I would pummel myeloma always, and live forever. After the success of my initial treatments and stem cell transplant, I still felt I had a chance to live to be an "old mare". And the fact that I didn't have the crazy "typical" myeloma bone pain, gave me even more confidence, "that I was different". Ha! What a joke... on me... Myeloma was deep inside of me, playing all kinds of tricks, and the 9 years of cellular, chemical fighting is now really taking a toll on me... physically and mentally.

But I fight on, super proud of my "Legend" status of 9 years of beating myeloma's odds, while still rather functional lol. Yes I have hair, yes I look pretty good considering, but the bone pain has given me a bit of a gimpy walk now.. Sometimes, not all the time. Next up, a cane... 

Tomorrow is Dex Steroids, yep full throttle 40mg, paired with my weekly Velcade shot, paired with the lovely bright blue Cytoxan Cyclophosphamide pills. 8 prescribed weekly, and so far I have done 3 the first week, 5 the second week, 6 last week, and not sure what I will do tomorrow, since it's Thanksgiving and my Birthday on Thursday. See steroids carry me for about 24, 36 hours. Then the yuck and crash comes. So Wed and Thurs will not be great days :(( What's your vote? 6, 7, 8? I will have to confess to my Dr on Monday Nov 26, what I have done, .... But if my labs look ok, or even good... how interesting will that be... can't wait to find out. I did them a week ago, should have waited until today, with an extra week of treatment...

Next up... 






Not my horse, not my picture, but so heartbreaking :((
The CA fires were so incredibly devastating-
I count my blessings and our good fortune every day!

Happy little rescue doggies

And big doggie Abbie pretending to be a little doggie


Have a wonderful Holiday with your family, stay well, healthy, happy and may your challenges be by choice. 

And lest I forget to mention, it was this time, 9 years ago, that my innocent annual physical and blood tests screamed something was waaaaaaaaaay wrong with me....  the wild myeloma ride was just beginning...






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11 comments:

  1. ellen goldsteinNovember 19, 2018

    Hi Julie,

    I finally screwed up the courage to post a comment. I felt SO BADLY that I encouraged you to go for the Zometa considering your reaction! My apologies! I had no idea it would be so tough for you.

    Anyway, happy birthday! And.....MANY MORE!!! I am hoping that this year will be a better one for you. Just a thought....would you qualify for CAR-T at this point, or could it be something for you to think about in the future?

    Well anyway, hang in there. BTW, I am care-giver to a close family member of mine. I know how it feels to have to take care of someone else in addition to everything else. The scary part for me is that I am not sure who will fulfill my role someday......

    Hang in there, my friend. Happy Thanksgiving! Your doggies are adorable! Those fur babies are lucky to have you!!!

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    Replies
    1. JulieNovember 24, 2018

      Hi Ellen! Nooooo need to feel bad about Zometa, everyone told me to do it! I just have super sensitive system to many things, yet some things, I do fine with. So random! Who knew it would have such a crazy affect on me!!! My Drs are shocked too. Finally, a lot of the pain has subsided, but I do attribute so much of my July forward bone pain to something triggered by Zometa, but we'll never know.
      Thank you for your Bday, Tday wishes :)) And yes caregiving is more than anyone realizes until it's "us", doing it. So very very sad when the body betrays on so many levels :(( I handle Veterinarian-animal issues better than human ones... I'm sorry for the loved one with health issues you are caring for... just so tragic... and yes, if not us, then who... when? :((

      Thank you for checking in Ellen and caring as you do. Hoping you are doing well with your treatments... update me on you!!! And thank you for appreciating all our furbabies :)) xoxo Julie xoxo

      Delete
    2. ellen goldsteinNovember 27, 2018

      Hi Julie,

      Thanks for giving me a pass on the Zometa, lol! I have been having some pain in my neck, upper back and shoulders, so I am beginning to wonder myself what is the cause. My MM is in remission based upon my last set of labs about 4 weeks ago. The pain followed my carrying some heavy things from the grocery store 4 blocks, (2X, just for good measure!!!), and going to a yoga class thinking it would help "loosen things up." I did yoga before MM, but recently picked it up again. It's a "senior" class, but maybe even too much for me now. I tend to push myself, as you do, and just go for it.

      But I am wondering about the role of Zometa in this recent pain. I also had one dose of Xgeva in April, which put me in bed for several days, and I could barely walk!

      I googled it, and there are plenty of reports of both acute and chronic pain resulting from the biphosphonate drugs. I told my onc. I would like to take 6 months off from them, which would mean I would miss one infusion, since I get them every three months. Oh well. It's never easy.

      I hope you are feeling a little better. I think about you often. I live in NYC, in a co-op apartment, (which is an apartment that you essentially buy, like a house), and we are not permitted to have dogs. I am severely allergic to cats, so we have a collection of 7 guinea pigs occupying most of our living room. Sometimes it feels as though we live on a farm!!!! But, no eggs and no milk, lol! My husband loves these little critters, and they mostly make a mess of my house, and they aren't very good pets since they remain afraid even if you feed them and take care of them. And they are not terribly hardy, so one of them is always sick and/or dying. But, whatever, my husband is retired and it's his hobby. There are worse things....lol.

      Well, it is windy here in NYC today, but I am going to go out anyway and feel that and the "partly sunny" on my face.

      Hope your pain is manageable today. You are a beautiful person, inside and out!

      Ellen

      Delete
    3. JulieDecember 03, 2018

      Hi Ellen! Thank you for your stories that give me an inside view of your life :)) I have several friends, family members, MM friends in NY and surrounding. Yes the City life is very different than my slightly rural, suburban life. Looove the story about your hubby and the guinea pigs!! 7!! thats a lot of them!! Very sweet!!

      And thank you for sharing about your Zometa, Xgeva stories. Some do just fine on it, others have a reax! Not heard of anyone like me yet. I do believe it was a BIG trigger for all my bone, nerve pain, as I didn't have anything in 8 years like what began in July, and continues on :((
      Hoping you are ok from what you mention!!

      And us Myeloma patients are funny. We so desperately want our pre-MM life back, that we try to continue to do things we did before... then "suffer the consequences"!! I can just picture you trying to do Yoga, carry heavy groceries, etc. I do things like that, well not like THAT, but around here with the ranch chores, then I think about fracturing something, and all the holes, lesions, etc, and I stop myself. I just don't want to be an invalid, or lose my mobility, or be in excruciating pain. I hate that I can't do what I used to do, but the "thought" of what COULD HAPPEN, stops me!!!

      Thank you for all your comments, support and friendship Ellen! Tell me what treatments you've been on over the years! You can also email at Missy.Myeloma9@gmail.com

      Love and hugs xoxo

      Delete
    4. JulieDecember 03, 2018

      Ellen! Oh no! I wrote a long reply and must have deleted it when I saw some Spam comments I deleted!! It was a long reply!!! But in short, THANK YOU FOR ALL YOUR SUPPORT, GREAT STORIES OF YOUR LIFE, AND ALL YOUR SWEET COMMENTS.
      Loooove the Guinea Pigs story!! So funny!!
      Be careful with all your activities, as we just don't want to take a chance aggravating MM!! I live like my bones are glass now, as I just hate feeling awful and in pain. Be careful with your Yoga and Groceries :))

      And tell me about all your treatments since your Dx!
      You can also email me at Missy.Myeloma9@gmail.com
      Thank you Ellen for your friendship xoxo

      Delete
  2. KarenNovember 22, 2018

    Happy Thanksgiving Birthday

    ReplyDelete
    Replies
    1. JulieNovember 24, 2018

      Thank you Karen! Hoping all is well with you and yours, and your Holiday was nice! xoxo Julie xoxo

      Delete
  3. OsabravaNovember 22, 2018

    Happy Thanksgiving/birthday and keep your head up, Julie.

    ReplyDelete
  4. JulieNovember 24, 2018

    Thank you Bernadette! Yes, working everyday to keep positive and not let "everything" get to me... Hoping you are doing well, and feeling good, and your Holiday was nice! xoxo Julie xoxo

    ReplyDelete
  5. MattNovember 27, 2018

    you are definitely a legend and should be super proud. you've got a long time to go. 40 mg is a lot of dex. I never could handle that much. I appreciate your positive attitude and outlook. It's a challenge, but you're doing it!

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    Replies
    1. JulieNovember 29, 2018

      Thanks Matt!!! And so are you!! We are all legends to have survived this ridiculousness as we have, and as long as we have. How much Dex to you take weekly? I've gotten used to the 40mg, and when I take a lower dose, I don't even really notice a difference now, lol.
      Thank you for all your kind comments and ongoing support Matt.
      You are a warrior too, and I appreciate knowing your journey! Write on, right! :))

      Delete

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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.