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

Monday, June 6, 2016

Dancing Beyond my Bubble!

Oh what a difference a week makes!

I recovered from my yucky feverish state from last week (see my previous cranky rant), skipped last week's chemo appointments as planned (yes, be mad at me!), then went to a beautiful beach wedding this weekend, felt a bit normal and most importantly had some FUN in my limited life! It's so crazy to feel so awful one week, and then so OK the next. I sure hope the cross contamination contact cooties stay away from me.

Back now to Myelomaville Mondays and Tuesdays. I totally forgot to take my weekly pre-chemo blood tests, and have to get myself together quickly to get there more than an hour early (see my results update below). Not easy for this party girl this morning :)))

Even without the power of Roids, I danced the night away (well kinda lol)
Not much stamina, and my neuropathy almost caused me to trip a few times,
but so worth it to have an evening of celebration and pseudo normalcy!
The beautiful Bride (my cousin) just finished her Pharmacy degree.

6.4.16
Such an awesome day to be out and living.
You know I love symbolism
there's even a Horse on this!


Update- 
Surprisingly my CBC's with Differential and Creatinine were pretty good. WBCs, ANC, Platelets, Hemoglobin, etc, all hovering just below the low end of NORMAL! WhooHoo! Maybe that's why I rebounded from the most recent fever yuk in a week. Goooo immune system for rallying! Interesting how these critical stats, while being on Kyprolis, are better then they've been in a long time.Yet, crazy how my IgA and M-Protein can be rising. Hmm, what's up with a stronger system, but cancer still creeping up?

I will do my full MM blood stats later in the month, after these next 2 weeks of Kyprolis/Dex, then have a status appointment last week of June. So maybe it will be a positive roller coaster this month? I know some may not agree with my philosophy to stay on the lower dose of Kyprolis, which I will continue again this month. It's so important to me to protect my organs from higher dose chemo since I've been treating for over 6.5 years now, and I am fully aware of the "foreverness" of my future myeloma treatments and how harsh this is on our bodies.

When I'm at the chemo lab for infusions, it's interesting to see and hear new chemo lab patient's shock when I tell them I've been in treatment for over 6.5 years, and that my cancer Myeloma is incurable. Seems like most can't wrap their thoughts around that concept, as most have been given a treatment stop date, for a "curable" cancer. Other's reactions to my diagnosis and situation helps me to process my crazy status. Hearing their "shock and awe" really brings it home to me, that I AM a SURVIVOR! 6.5 years is significant to be continually battling cancer!

Everyone thinks I'm "so strong". I'm really not... I just keep moving forward as if I didn't have cancer, as it's still so unbelievable I have cancer, let alone incurable cancer. So I just move forward. Always forward. One day at time. One foot in front of the other. Living life, one challenge at a time.



Thanks for checking in!!



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

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4 comments:

  1. ellen goldsteinJune 08, 2016

    So glad you are feeling better, and most importantly, had fun!!! Great that your labs look good, as well.

    I hope you continue to rally and respond to treatment.

    Ellen Goldstein

    ReplyDelete
  2. JulieJune 09, 2016

    Thank you Ellen! Yes, from one extreme to the other. Crazy bipolar cancer life here. Hoping you are doing well too. Please let me know your status and story! You can email me at Missy.Myeloma9@gmail.com or direct me to your blog, if you have one? Thank you for all your kind support and comments! :))

    ReplyDelete
  3. AnonymousJune 14, 2016

    Well my dear friend..I don't like roller coasters anymore :) You are an amazing lady. You feel like pure crap, you tell your blog people about it, you have moments in the bathroom and not making it and that you're tired of being sick. Julie you are so strong and I can relate to the "come on I'm better now" let's get moving body but your record of 6.5 years. Getting out and doing your "normal" thing's once in a while is great. The wedding looked beautiful. The ocean seems to do positive things to our souls, frees them up for a little while. All is well I am recovering from surgery "again" which is driving me crazy. My school has closed for good now so out in the workforce looking for a coaching job again. I loved my job. My sports ended up very well this last year: 2 championships (volleyball/basketball), 2- 2nd places (elem. soccer/basketball) and 2-3rd place in soccer. I will deeply miss those kids. Sho is going to be a senior in Aug. and is really looking forward to it. Softball over the summer with some hopeful college prospects and signing. Wanted to drop you a note because we still haven't gotten together and I miss you. Thanks for keeping me updated through your blog I really appreciate it. Stay strong, laugh a lot, give hugs and know you are a very special lady to a lot of people. Take care my friend: Theresa (you know who )

    ReplyDelete
    Replies
    1. JulieJune 16, 2016

      Hi Theresa! Thank you so much for checking in, reading, and for all your support! Love your update too! I will email you, sweet friend! xoxo Thank you! xoxo

      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.