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

Friday, August 26, 2016

Thanks for Stealing My Life Myeloma

Hello 8.26.16
I'm moving like a sloth today, thank you Dex crash, Chemo crash and low blood counts. How about a pictorial update this time!


~ Poof! 35 years as a college counselor... my 35th anniversary recognition celebration recap. So nice to see all my colleagues I rarely get to see anymore.

2017 will be my last... thank you myeloma. Proud I hung in there for 35 years!
Tuesday night's smaller dinner celebration recognition of long term colleagues
Chancellor Dr Dianne at Friday's all-staff Opening Day Celebration
She's such an inspiration, and I admire her so much! 
The "Godfather of Counseling", Dr Al
My Counseling mentor and friend for life!
Friday's all-staff Opening Day celebration. Hundreds of colleagues there

Should have worn a mask, but cross your fingers, I'm still ok!
Without Dr Al and Dr Dianne, (and Joan and Bob)
I wouldn't have ever been Counselor Julie
Love you endlessly and thank you for my COC life!

Hard to believe this chapter in my life book will be coming to a close in 2017. I always thought I would be Counselor Julie forever. Becoming the lil ol lady who's been there since dinosaurs roamed the college hills. Never did I ever think my career would be edited for me, due to cancer. As I've written before, I pushed myself to work during initial treatments, returning back just "months" after my July 2010 stem cell transplant, working while on maintenance chemo, immune compromised, etc, continuing to work after relapse in 2013 to present, while in continuing chemo treatments, so fatigued, so immune compromised, with crazy side effects. What a dedicated goof I am! But I just love helping students realize their dreams and goals, love the mission of our college, and I have so much passion for the educational environment, my students and colleagues. Seriously, it's not an easy decision to give up half your identity. So very fortunate to have had the wonderful career I've had, for 35 years! I still feel half my age (mentally), with so many unfinished, unrealized plans... Hard to process...

~ My Numbers update: 
Not good as I suspected due to the steady upward climb for months now. Conversations with my local oncology team and my SCT team are: "Maybe time for a medication change Julie"... (as sadly Kyprolis may not be my magic elixir anymore I have to acknowledge)..."Time to change to something else soon Julie" they suggest... Ugh, Cccchange... again. I was hoping Kyprolis and I would be friends for a while... Oh well, such is the nature of myeloma, right. No matter how it is medicated and treated, it will always outsmart any chemo fighting it. I'm finally accepting, myeloma is stronger than my ability to keep it consistently controlled. Next in line will most likely be Pomalyst. We'll see.. the plan though is to stay the course with Dex and Kyprolis for another month or so...

Lol- my arm looks fat and distorted here! Just the camera angle.
I'm IgA Myeloma:

(Normal IgA = 70 - 400, Normal IgG = 700 - 1600, Normal IgM = 40 - 230)

Date                      IgA        IgG         IgM 
8/20/15                1530       258         < 18
9/13/15                1770       268         < 18
10/18/15              1890       240         < 18
BEGIN NEW KYPROLIS + DEX TREATMENT:
11/18/15              1440       233         < 18
12/2/15                862         230         < 18
12/30/15              482         262         < 18
1/18/16                426         228         < 18
1/27/16                432         221         < 18
2/10/16                551         227         < 18
2/28/16                635         226         < 18
3/22/16                533         242         < 17
4/17/16                717         251         < 17
5/15/16                808         232         < 17
6/23/16               1140        267         < 17
7/21/16               1180        247         < 17
8/17/16               1540       238         < 17
                Yep! Up it went...

M Protein: PROTEIN ELECTROPHORESIS RESULT, SERUM
Normal = 0 ... Zero

 July = 1.26
Aug = 1.01
Sept= 1.37
Oct = 1.58
BEGIN NEW KYPROLIS + DEX TREATMENT: 
Nov =  1.12
Dec and Jan = Not Detectable! thank you Kyprolis + Dex
Feb =  0.62 Ugh! Quite a jump in a short period of time (Off Dex)
March = Abnormal, but no M-Protein number mentioned (On Dex)
April =  Abnormal,  but M Protein value not detectable (On Dex)
May = .75 That's a BIG upward Trend in just one month!
June = 1.06
July =  1.01 
Aug =  1.58 
Up again... back to where I was in Oct 2015

Awesome Nurse Josie!
My veins are tired. 2 sticks on Mon and Tues :(







































































I remember arm IV's from my 2010 SCT!








































































































































































































































Awesome Nurse Tracy

~ Did I ever tell you about my "cover girl" status for a myeloma magazine? 
Have you seen me in your oncology hematology office yet?


I was interviewed waaaaay back in November 2015 and the magazine is just now being published! Unfortunately, things have changed quite a bit for me since the interview, and I am not doing as well now, as I was then. My hair was still full from Revlimid and Dex, and now it's thinner and short. Kyprolis and I were best friends (see my stats above for Dec - Mar), and I was so hopeful myeloma would be controlled for loooooong time. I laugh at the front cover quote: "I feel more alive than ever"... as that was in reference to when I am on steroids LOL!, or my excitement that Kyprolis was working so well...  


My interviewer Debbie was super positive, caring and a really sweet person. She wrote the article from a positive, all is great and well in myelomaville perspective. I appreciate all the effort that went into interviewing me, the photographer Dana's personalized photo session, and all the effort the editors and publisher have done to make this a great magazine for myeloma patients. I still haven't seen the physical copy, but you can read online here at Guide2MultipleMyeloma and Patient Stories and HealthMonitor.  It loads really really slow, so be patient (lol no pun intended!). I have to let them know something's up with their website. 


~ And I have a psychological/philosophical question for you... But I'll do that next blog, as this post long enough!! I asked my Doctor a difficult (timeline) question, and received an answer I didn't quite expect...

Crazy how fatiguing myeloma is! I push myself so much, but my helium tank is empty


Thanks for checking in and reading and caring about my myeloma journey. Let me know you've stopped by, tell me your story, and where you're from!




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

Posted by

4 comments:

  1. UnknownSeptember 03, 2016

    nice blog post. If anyone wants the best hair transplant in australia the you can visit our centre. We provide the treatment at low cost.

    ReplyDelete
  2. UnknownSeptember 03, 2016

    Julie,Congratulations on 35 years of service.I know
    you have helped so many people to seek their best.Glad
    you are getting such good medical care.I think that too is a reflection of you as you bring out the best
    in people.I thought the picture and article were neat too!Continue to tale care of you
    Ron

    ReplyDelete
    Replies
    1. JulieSeptember 08, 2016

      Thank you Ron for checking in! Yes, I can't believe 35 years have passed, doing what I love- "Changing the World, One Student at a Time" :)) Where did the years go? Wow! Then again, it should have been more... Thank you Ron for all your support, encouragement and friendship!

      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.