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

Wednesday, January 9, 2019

Hello 2019 ~ Cheers to Posts on the 9s! Wow 9 Years of Myeloma Madness

1.9.19
Hello 2019 and Happy New Year Everyone!


How fun to write 1.9.19
99999999999999999999999999999

9 Years with Myeloma
9 Years surviving Myeloma
9 Years of Myeloma Treatments
9 Years I Never Thought I'd Have

In Myelomaville, 9 years is a BIG DEAL!!!


I have 999999999 zillion thoughts to share... on so many levels, about so many things... but I will edit my thoughts and be back in 9 seconds, or 9 minutes or 9 hours to finish posting :))

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So here we are, January 2019. We've rolled the calendar over to a fresh new year. But just think,... how many have already received, or experienced life changing news or events in just 9 days of the New Year. 9 years ago, I was reeling from my new Myeloma diagnosis. Our lives are just so "fragile", and can change in seconds. Good change. Bad change. When life is flowing along, I don't think many of us give potential "tragedy" significant thought. We just don't think "bad things" can happen to us. We're aware of terrible things, events and challenges that happen to "everyone else", but we often think we're immune. We don't personalize the "What If". We carry on, presumptuously, safely, robotically, with our daily lives. Doing, planning, going, expecting, assuming. Assuming what was, what is, will continue to be. Then boom! Suddenly our lives are forever changed. Something, somewhere, to someone close to us, or to us, happens. Then life is never the same. Never ever the same, ever again.

No matter how carefully we plan, how well we take care of ourselves and our loved ones, "something" is bound to happen. That's just life. I've learned tragedy, challenges and heartbreak are the "norm". Life is not Unicorns, Rainbows and Rivers of Glitter. Life is Hard. Life is Challenges. Life is Pain. Life is Being Tested all the Time. No matter how much we think we can control outcomes, ultimately, we cannot. Perhaps because I was a Counselor/Advisor all my adult life, I felt a greater ability to affect outcomes and destinations. I was a healer, helper, facilitator, eye opener, dream creator. I inspired, lead, questioned, proposed, and helped others see themselves and life's potentials clearly. I opened doors and windows of opportunity for anyone that was willing to work for their dreams and goals. I always felt hope for everyone and everything. I always believed "if there's a will, there's a way". I was the eternal optimist. I believed awareness, change, options, choices, education, gave one unlimited, limitless possibilities. Possibilities to rise above. Rise above pain, disappointment, tragedy.

But tragedy always happens. In our little worlds, and the big world. Do you know anyone that's immune? Do you know anyone that hasn't experienced some sort of tragedy? Perhaps the older the we get, the more aware we are of how every life is touched by "Something"... It's just a matter of degree, right? How much, how deep, how tragic the tragedies are. My life went from hard work and commitment equaling positivity, happiness and a semblance of control. To a life quite out of control, regarding the health challenges that continue to escalate for me and my husband. No I didn't think I was immune, but I just never thought what I am currently living, would be my life.

9 years ago, I went from thinking I was overall healthy, to a terminal cancer diagnosis. I went from thinking I had control over my life, my body, my future, to learning I basically had little control over much of anything any more. Why I am still here today is a combination of medical science and medical miracles, with a dash a good luck, and internal organs that have been able to withstand 9 years of myeloma treatment. Why I am still here, is absolutely amazing to me! I am grateful and appreciative beyond words. But being here still, has been an incredible challenge.


9 years of myeloma treatment. 9 years of being sick. 9 years of wondering if and when, I'll run out of options. 9 years of never feeling "normal". 9 years, always aware my body is full of cancer. 9 years of an internal fight. My body trying to kill me, as medical science tries to outwit ever morphing cancer cells. Seriously, if you are not on this type of journey yourself, wrap your head around that. I still can't. 9 years of various combinations of treatments: chemo, immunotherapies, pills, injections, shots, medications, etc. And a Stem Cell Transplant. And alllllllllll the crazy side effects, completely ambushing my life. I can't fully wrap my little head around everything I've been through and continue to go through, to stay alive.

But I am Alive. Alive and still up for the fight. It's a daily fight, but I'll fight as long as there are options to treat me with, that allow me some level of Quality of Life.

Currently, since late September, I have been on a weekly cocktail of:
40mg Dexamethasone steroids, paired with Velcade shots in the belly, paired with 400mg of Cyclophosmamide-Cytoxan chemo pills. This happens every Monday. 10 steroid pills, 1 shot, 8 chemo pills, all in one day! How can the body handle that? Just amazing what medical science has figured out to kill cancer cells, but not kill us in the process. Well, me at least. The treatments haven't killed me, they've successfully killed myeloma off and on for 9 years!

My status labs are next week, and I'll find out the effectiveness of this treatment at my next Dr appointment on January 21.

Meanwhile, tragically, my husband Jim continues to decline with Alzheimer's. I'm not sure which is worse. Terminal, incurable cancer, with treatment 24 7 for life, or having one's brain slowly betray you, stealing your ability to analyze, do critical thinking, creating complete confusion about life's vital tasks that should Not be confusing. Complete confusion, disorientation, about things we all take for granted. I knew Jim would age ahead of me, and become "old" before me, but I never thought such a talented, incredibly capable man would have his functionality stolen away from him, as is happening to him daily, weekly. My brain thinks for 2 now. My broken body, has taken over so much, as his breaks down more. The biological trickery is crazy to witness. The brain confusing that which should not be, never was, confusing. We are living a very fragile fine line, that if either of us loses mobility, life as we know it, will never ever be the same. But I remain ever grateful for the wonderful life we had, and to a degree, still have. I am ever grateful and thankful for the wonderful insurance we have, that allows for treatment of our ridiculous situations. I am forever grateful for all the wonderful, supportive loving people in our lives. As awful as things are, they could be so much worse. I am appreciative, grateful, blessed in so many ways.


Hope your 2019 is going well so far. Thank you for checking in, and caring about my life, blog and posts as you do!




Live happy, live well, and make a difference somewhere, somehow, 
with someone or something as often as you can


6 comments:

  1. Happy New Year Julie..I'm anxious to find out how you're doing.. please post before 9 days!!

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    1. Thank you Karen! Happy 2019 to your and your family! We're "ok"... one day at time. I'll know my myeloma status on Mon Jan 21. Thank you for caring and commenting as you do. Means so much to me to know my thoughts are being read, heard, and are meaningful to others. xoxo

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  2. Your blogs are a gift to us all. Thank you for sharing the good, the bad, and the ugly. Hugs. JC

    ReplyDelete
    Replies
    1. Aww JC,... "gift"... what a sweet word to describe my posts. I am forever grateful you "found me" and for our myeloma, cowgirl friendship all these years! I so appreciate your loyal following, and you letting me know my level of "sharing" on multiple levels, is ok and meaningful, and that my thoughts are being "heard". Stay well, and hoping our similar treatments pummel and intimidate myeloma for a long time. Horsey hugs and kisses xoxo

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  3. Julie,good to read you are still so positive and so determined to try all treatments.Sorry about Jims health.
    But glad you both have each other as well as great children.Enjoy your updates!

    ReplyDelete
    Replies
    1. Thank you Ron for your kind and supportive comments, and your loyal reading all these years. Happy New Year to you and your beautiful family! Yes, we are very fortunate for so much in our lives, amongst the ridiculous challenges.

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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.