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

Friday, July 7, 2017

New Chapter, New Identity... Same Life, Same Challenges

7.7.17


Surprise! Did you see I posted a few days ago?
Be sure to scroll down to my other posts, as I reflected on my 7 year Stem Cell Transplant anniversary, on 2 very symbolic days for me:
July 2, I was admitted to City of Hope to begin my first (and only) Stem Cell Transplant
July 5, the day my own stemmies were infused back to me, restarting and regenerating my chemo and myeloma ravaged body.

Yes, 7 years of myeloma invasion this 2017. Happy 7 year SCT anniversary-birthday to me. On one hand I marvel I am still here. On the other, "of course I am", I whisper to myself. I must be. I have to be.

Moving forward, I had my 14th Darzalex infusion this past Monday, and I'm doing ok. I tend to "crash" on day 3, 4, 5, 6. Combo crash from Dex steroids and Darza, while the Pomalyst side effects carry on for the entire month lol. It starts with extreme fatigue, feeling bloated from Dex (I think), then light headaches, dizziness and achy skin. I stay close to home on these days, as I never know what my GI side effects might be, but fortunately, nothing like the extreme surprise volcanic reactions I had from Revlimid, and infrequently, Kyprolis. It's interesting the "bargaining" we do regarding side effects. There are days I wish I could "go", then other days, wishing I would stop "going". Days where I am so achy, I don't know if it's side effects, or I'm getting a bug. Not sure which is worse. Then the numbness and tingling from the Neuropathy. And the fatigue, the absolute lack of "helium", is just so debilitating.

I'll take my myeloma marker labs next week, and know my status on Tues July 18, which is also my 15th Darza infusion. Will be interesting to see my numbers, as my infusion schedule is off several days, due to all my retirement events end of June. I do worry with the every other week Darza protocol, as I am skeptical about the monthly protocol coming my way in the future. But the years of research trials and studies determined the infusion schedule, so we'll see how it affects me personally. I just wish for treatment consistency... but that's not myeloma's reality. Myeloma's reality is continual treatments, successes, refractory, new treatments, refractory, repeat, repeat, repeat...

And so... I've been "retired" for a week now... certainly not the "retirement" I thought my retirement would be. I've let go of a lot of plans and dreams... I accept. It is what it is. Always reminding myself: "you can't control the things you can't control Julie"... I remain so grateful for all the good things in my life, past and present, and for this 7 year anniversary that almost wasn't... 

Maybe one day...



Maybe one day...

 Thanks for reading and caring. Hoping your summer is full of fun and happy times! 

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

Posted by

2 comments:

  1. AnonymousJuly 07, 2017

    Julie!
    Happy 7th Anniversary!
    As I always mention, I read your blog all the time! (I have it saved in my favorites at work =) sshh! )
    I love to see your updates and truly wish you the best!
    I trust that you will come to enjoy your retirement and not look at it as being so forced. These are conversations I have with my mom all the time, she is currently back to work but is planning on retiring in a year or so.. she said as soon as we give her grandkids she will retire!

    I really like that quote you have "We are not given a good or bad life, we are given a life". How fitting!.... When my mom would have bad days and when she was feeling low... she would often say why me?.. but then its like why not me? why anyone? Why should anyone have to go through this.. but then there are really good days.. and you appreciate and enjoy them more than you probably would have.. if things were "normal".
    In some ways Myeloma has really taught our family to be more appreciative of our time we spend together.

    Sorry this post is all over the place!
    I find your posts always so relateable and therefore I feel as if I am talking to a friend when I write!

    Hope you had a great July 4th Celebration with your family!

    Una

    ReplyDelete
    Replies
    1. JulieJuly 08, 2017

      Hi Una! I love your comments! Thank you so much for caring as you do, and appreciating my posts :)) Sounds like mom and I are in similar places with our lives, as I had always told my kids I would retire and become their "GrandNanny". Well, not yet either, and stupid myeloma had other plans for me. How's mom's treatment going? Tell her hello for me, and wish her my best. I'm glad you feel like we are friends from my blog! I do too :)) You can also email me at missy.myeloma9@gmail.com . Thanks for commenting and caring as you do Una! xoxo

      Delete

Subscribe to: Post Comments (Atom)

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.