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

Friday, April 7, 2017

Thank You Medical Science, and Brilliant Researchers! You're Saving My Life!

4.7.17
Hello to Hope and Successful Treatments!


If you've checked in here, between my "On the 7's Posts", you're up to date with all my good, and crazy news. I don't have any new dramatic news since my April 1st, "NO APRIL FOOLS JOKE" post of amazing treatment success and crazy side effects. Truly, I am still in shock how fast Darzalex with Pomalyst and Dex steroids have brought my IgA and M Protein down. I am so very grateful to all the brilliant medical scientists and researchers working on medications to treat myeloma and I am so indebted to all these brilliant minds that work so diligently to keep us myeloma patients alive!
I do however, temper my excitement with myeloma's reality, that this treatment will not last "forever", but I am thrilled my body and this "monoclonal antibody" is able to outsmart myeloma, at least for now.

Here's my incredible results again:


 Yes, your eyes do not deceive you!

Of course, my levels are still "Abnormal", as my test result sheets scream at me all the time. But seriously, from "death's doorstep" Nov, Dec, Jan, Feb... this is incredible beyond words. My Doctors do remind me of my "high risk" status, as I tend to respond well initially, then boom, myeloma quickly outsmarts, mutates and wins again. But, today, this week, this month, I am beyond grateful for my status.


I won't "complain" about all my crazy side effects either, as I have fully blabbed about those in my previous posts. Nothing has changed with that, and I "cowgirl up" and suffer through my pain. Darza infusion #6 was Tuesday, so I felt ok Tuesday and Wednesday. Thursdays I wake up dizzy, ditzy, groggy, mentally fuzzy, puffy, swollen and achy. And that continues and worsens throughout the day, night. Fridays (today), I wake up even more dizzy, ditzy, blurry, groggy, fuzzy and the nasty fever-like nerve pain begins. But I keep reminding myself of how well I am doing on a molecular, cellular level and I push through. I am very grateful to be here to tell you my story.

Lost another dear friend and colleague~
Here we are late last year, 
battling together at the Chemo Lab. 
Armida lost her battle this past week, 
and I am so sad for her and her family. 
Stupid, worthless cancer... 

But life moves forward, and I take one day at a time, doing what I can on the few "good days" I have. I've needed to take one of our kitties to the Vet, but just haven't had the helium to do so, but her URI became concerning, so I was able to get an appointment on Wednesday, knowing my "crash clock" was ticking. Look what someone had brought into the Vet's office. A box of little baby opossums, who's momma was hit by a car. Thankfully, still many loving and compassionate people in the world. The babies are being taken care by a wildlife rescue. 

 Awww baby opossum


I know, you're worried about me handling wild animals and getting cooties, germs and diseases. Well by now, you know I worry much more about human contaminates, not animals, as they are so clean! Humans... not so much lol. Yes, I scrubbed up, and washed well after handling the little cuties! 


And yes, I still "drag" myself out to the arena, every day I can, for just a bit of exercise, picking up "horse apples". It's really the only exercise I get, except for walking to and from my car, to my medical appointments, and on good days, I even take the stairs! I try to move around each day, no matter how awful I feel. I am "tormented" by the Spring beauty around me, wishing I could run through the fields of Poppies in bloom, or hike the horse trails behind me, or just take a walk down the road like I used to... but I accept my reality, and accept that "Less is More", and do what I can, when I can.

I laugh at the ironies of my life. I look to the heavens, and quietly yell at the "universe" for my predicament. I marvel at what I have been through since December 30, 2009, and take deep breaths of appreciation for the life I do have. I am here, I will fight to stay alive, and I bear with that which is tossed my way.
I am not afraid of dying... I am afraid of not living...

Mr Boots says
Thank you for reading and caring :))


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



10 comments:

  1. Julie, you are so right, there are so many amazing superstars working on MM, their dedication is inspiring. And you are an inspiration to us, but really, I still just want you to feel good!! Inspiration is overrated in your case:)
    XO Jan

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  2. Aww, you are too kind to me Jan! I am thrilled with my Darza response, and even tho the side effects can be unbearable at times, I am so very grateful that my body is responding. Thank you for being such a loyal reader and commenter. Means the world to me :)) And that's Boots up there saying "nnnneeeiiggghhh" to your herd! Thank you Jan! xoxo

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  3. Hello from Alberta, Canada!
    Julie,
    I love reading your blog posts, I have been following them for over a year now! It warms my heart and brings a smile to my face to see that you are doing well! My mom suffers from Myeloma and I see a lot of similarities in your journey. I wish you all the best and trust this treatment will work for you for years and years to come =)

    Una

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    Replies
    1. Hi Una! Thank you for checking in and letting me know you follow my blog. Means so much to me to "know" my readers. Very cool you and mom are from Canada! Always wanted to go there, but stupid myeloma now prevents me :(( Hoping mom is doing ok and the meds are keeping her stable or in "remission". Which treatment is she on? Thank you soo much for leaving a comment so I can know you :))

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    2. Hi Julie!
      My mom is currently on the same regime as you! However she did just have her second stem cell transplant in January.(Diagnosed October 2013, first stem cell in April 2014, relapse May 2016) In December we found out her Myeloma was out of control and the only thing left to do was do a stem cell again, its the only option we had. I am very happy to report she went through it very well! After the stem cell she was told that all the Myeloma markers were normal! which we didn't expect! However her Oncologist recommended to go back to doing the Darza regime instead of taking time off treatment as she was pretty high risk as you would say. We trust and pray that this stem cell has "reset" things so that the Myeloma will continue in this controlled and stable state!
      Positive thoughts and prayers for you and all Myeloma Warriors always! <3

      Una

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    3. Hi Una, thanks for sharing your Mom's details. Wow, what a strong lady she is! I don't know if I would be "brave" enough to go thru a 2nd SCT. Her body must be very strong, not to mention her spirit! What "type" of myeloma does she have? My Drs have mentioned with all years of Revlimid that I've previously been on, I most likely wouldn't be a candidate for another SCT. I do support continuous maintenance, as MM is so stealth. Being on maintenance kept me in remission for a full 2.5 years, but when I took a break, MM crept back in my 3rd year after SCT, with no meds. So glad she is doing well, and I hope her treatments keep her in remission or stable status "forever"! Is she just on Darza, or another med too? Thanks for reading, commenting and sharing her story Una. You're such a great daughter :))

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  4. Julie,
    Wonderful news. I've lurking for awhile, but this brought me out. Further incentive was to comment on how well and sparkling you look in the possum picture.
    Chip

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    Replies
    1. Thank you Chip for letting me know you follow and "lurk". That made me laugh. Yes, there are so many great blogs out there, and I don't always comment either, but it's so great when readers do. I sure appreciate you stopping by to comment. It's always great to "know" who's reading and appreciating my rants, musings and silly pictures. Yes the baby opossums were beyond adorable, and if I wasn't battling stupid MM, I probably would have volunteered to foster a few!! Are you a myeloma patient or related to one. Thanks again Chip :))

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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.