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

Sunday, December 30, 2018

9 Years Ago Today, I Learned Myeloma Owned Me... Forever

Hello 12.30.18


9 Years = 108 Months

9 Years = 469 Weeks 

9 Years = 3,285 Days

9 Years = 78,840 Hours 

9 Years = 4,730,400 Minutes 

9 Years = 283,824,000 Seconds 



Yes, 9 years ago I was diagnosed with Multiple Myeloma.
I still can't wrap my head around it...
I was staring out the window as I writing this, trying to think of something "profound" to say, but I don't feel profound today. I feel a bit empty, blank, incredulous, still consumed in wonderment. How? Why? When? Really? Got to be kidding! Not me! Wrong person. Multiple Myeloma. Terminal Cancer. Incurable Cancer. Treatment for Life Cancer. Multiple Myeloma. Myeloma. Blood cancer. Blood Plasma Cancer. Treatment will save your life. Chemo. Steroids. Stem Cell Transplant. Kaiser. City of Hope. Blood Tests. Chemo. Blood Tests. Chemo. Blood Tests. Stat. Blood Tests. Chemo. Status. My status = Multiple Myeloma. Cancer. Incurable Cancer. Terminal Cancer. Yes, but a "Treatable Cancer". 

"Your Bone Marrow Biopsy", from 12.18.2009, has confirmed your diagnosis of "Multiple Myeloma", a Blood Cancer. Blood Plasma Cancer. High Risk IGA type Myeloma." You're young for this diagnosis." I'm so sorry." So sorry to give you this news and diagnosis." Yes, cancer." Multiple Myeloma"... Incurable, but Treatable."

Lots of details. Lots of questions. Numb. Shocked. Incredulous. Not for real. How did this happen. Wrong person. The lab mixed up my blood with someone else, that's what must have happened. Blood Tests, Chemo. Steroids, Chemo, Steroids, Chemo Steroids. Blood Tests. Stat. Blood Tests. Stat. Chemo. Steroids. Chemo, Steroids, Incurable, but Treatable. Radiation. Yes, Radiation for all the holes, lesions, plasmacytomas. Radiation. Lesions. Holes. Plasmacytomas. Fractures. Bone involvement. Too many areas to treat... so much bone involvement. Radiation. Diarrhea. Imodium. Diarrhea. Imodium. Chemo. Steroids. 

And here I am 9 years after a deadly diagnosis!. A miracle survivor. More chemo rounds than I can count. Been thru almost all the standard treatments. Revlimid. Kyprolis. Pomalyst. Darzalex. Velcade. Are there any left, after my current old skool Velcade and Cytoxan-Cyclophosphamide, Dex combo? Yes. Thank you brilliant researchers. Yes. But are clinical trials next? What's next... which chemo. And if I choose to stop treatment... how long do I have??? "Months", he said, "not years", as I once thought, when I asked my SCT oncologist, a few years ago. Yes, I will continue to treat. Treat for my forever. But so sick of being sick. So sick of fatigue. So sick of diarrhea. So tired. So fatigued. So tired of not being normal. My previous normal. My life was stolen from me. Wanh, waaanh, waaanh,.... 



Yes I am so very grateful to still be here. So amazed. So proud. So grateful!!!

Wishing all of you the happiest of New Years, and may 2019 bring good things to your life, and your loved ones. Wishing you good health, no drama, dreams fulfilled, and a meaningful life. Thank you for reading, following my story and your wonderful comments. I'd love to know how long you've been reading my blog, and following my story. 9 years is a long time to be writing :)) I'm pretty amazed when I look back on all my posts, and think about all my thoughts and stories living here on this blog!

Here's all my 12.30 anniversary posts: 

https://juliesmyelomamoments.blogspot.com/2017/12/happy-new-year-you-have-myeloma.html

https://juliesmyelomamoments.blogspot.com/2016/12/7-year-myeloma-diagnosis-anniversary.html

https://juliesmyelomamoments.blogspot.com/2015/12/6-years-ago-today-and-im-still-here-to.html

https://juliesmyelomamoments.blogspot.com/2014/12/5-years-ago-today-boom-mm-forever.html

https://juliesmyelomamoments.blogspot.com/2013/12/

https://juliesmyelomamoments.blogspot.com/2012/12/

https://juliesmyelomamoments.blogspot.com/2011/12/

https://juliesmyelomamoments.blogspot.com/2010/12/



And later on 12.30.18 
we celebrated my 9th diagnosis survival anniversary! 
So amazing I'm here, 9 years after Myeloma tried to kill me!
And yes, continues to, but you're not gonna win Myeloma!
Me and my 9! 

Son Scott, GF Ashley, and Me :))

Scott and Me, and doggie Abbie :))

Ashley and Me :))

What a wonderful little Celebration of Life,
9 years of addition life, I never thought I'd achieve.
Thank you to all my wonderful Doctors, Nurses, Medical Staff
Medical Science Researchers, my family, and friends near and far!




6 comments:

  1. Hi Julie, I have not missed one post you have posted since 2009. I have read them all. Sometimes I laugh with you, sometimes I cry with you, sometimes I am mad that this has happened to you, and sometimes I am somber thinking about how you have survived and I can only say I am amazed by you.

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    1. Awww CB!!! This is sooooooo sweet! Wow, you sure are a LOYAL reader, and probably win the award for most loyal, consistent, reader! Thank you so very much for caring as you do!! And thank you so much for your kind words of appreciation and support! Hope you are doing well, Happy New Year 2019 xoxo

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  2. congratulations on 9 years and here's to many more. you are a miracle and I'm glad to know you

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    Replies
    1. Aww, thank you for your kind words of support, and I too, am so glad we found each other in this crazy Myelomaville world Matt! You're a miracle too, just a bit behind me in years, right. And actually MORE of a miracle with your amazing trek to Kilimanjaro !!! :))

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  3. I continue to enjoy your posts. You write so well and have a wonderful way of looking at things. As I've mentioned before, my husband has had MM for many years and is doing quite well. I concentrate on that! Here's a great 2019.

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    Replies
    1. Awww, thanks so much for letting me know you continue to enjoy my posts Wendy! Thank you for your kind words of appreciation and support! Hoping your hubby continues to do well! How many years, and which treatment is he on, if any? Happy New Year 2019 :))

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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.