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

Monday, August 4, 2014

Surprise, Surprise! Rescues and Results

And just like that... July is gone and August is here! Still I pause and reminisce my July 2010 life-saving, life-altering events, and marvel at where I am 4 years later.
I am still here Myeloma!

Since my last blog posting and July milestones, I've met with my oncologist/hematologist, received my monthly results, discussed my current stats and treatment plan for this month and possibly next. I've taken note that I've completed 10 months of Revlimid and Dex since coming out of remission last year, dealt with several new varieties of side effects and weird physical stuff, but over-all, my quality of life is rather tolerable... considering I have "terminal, incurable" cancer, and I'm limited by how immune compromised I am.

But the ironies of my life never cease to humor and distract me from dwelling too long on my cancer status. I've always known my tendencies towards nurturing/healing/helping others, but my continual intersections with those that need me seem to never cease. So listen up Cancer... I have NO time for YOU!!!

This is what happened in my life this past week: 

 3 little sparrows needed me

 And my life is currently consumed with 
feeding these sweet babies every 30-40 minutes
Sun up to Moon rise!

So really Myeloma, listen up: I DON'T HAVE TIME FOR YOU!

I laugh at all the things that life throws my way. Perhaps I unintentionally intentionally attract these curious adventures? Yet what I do know, is that on a small scale I have been destined to find (or they find me!) a multitude of nature's most beautiful creatures that need my rescue and rehab! My mission here on earth Myeloma, is far from over, so just move on over and out of my life, and let me get on with saving other lives (human and animal).

I was QUITE SURPRISED to learn my Myeloma numbers were back UP this month, and my immune system continues to be borderline scary compromised! Into my "bubble" I go... ugh, I am so scared about getting sick, as there are so many germs out there, just lurking to attack those of us with weak immune systems!

So here's my results in #s :
WBC's really low:  2.5 (4.0-11 scale)
ANC (Absolute Neutrophils Count): 1.3 (1.8-7.7 x 1000/mcL) eekk!

M-Protein/M-Spike up again:  0.85 (normal = 0.0)
Beta Globulin Electrophoresis:  1.46 (0.65-1.10 scale)
Gamma Globulin Electrophoresis:   0.41 (0.70-1.60 scale)

IGA:  1110 (70-400 scale) up again from last month (I'm "high risk" IgA Myeloma)
IGG:   335 (700-1600 scale)
IGM:    17 (40-230 scale)

So what's all this mean? I'll continue on with Rev 10mg + Dex 20mg for August and see what happens. My oncologist and I agreed that if the numbers continue their upward climb, we'll try Rev 15mg for September, or add/try Velcade or another treatment option. My Drs are worried about my compromised immune system as there's a delicate dance here between treatment options and my ability to tolerate it. But I'll fight the fight, whatever that fight might be, as I have too much left here to do.

These past couple of months, several amazing people I know lost their battle to various cancers, including Myeloma, and others have been newly diagnosed. The tragic passing of loved ones is a wake up call to me to continue to view everyday as a Bucket List Day, take nothing for granted, find joy, happiness, humor, purpose and fulfillment each and every day! Yes, I worry about my "situation", but I don't dwell on it. I am cautiously optimistic that I'll get many more years, but I am also realistic...

So on the days I can, when I feel well, 
I enjoy all the little adventures that intersect my life!



















Jim and I took a little road trip the other day. Not too far, not too dramatic, but we spontaneously took off on a day we both felt ok. We've decided we'll do more of these little mini one-day vacays. 
I don't venture too far from home, too far from the bathroom or risk too much contact with germy people. "Less Is More" is just fine with us.
   

Last month, I was able to celebrate
Kristin and Ashley's life successes! 
Just love these girls!
Dex really slammed me that day, 
and it was quite a funny ride!

I had so many other things I was going to write about, but my little baby birdies have totally distracted me! So if you're curious about the birdie's story, here's my other blog :) 


Links worth clicking-

Treatment options discussion group
Myeloma Beacon is a fantastic Myeloma information source!

Who reads our blogs? Great post from Pat Killingworth
Thank you to all my readers everywhere, for caring about my myeloma journey!

Tom Brokaw's commentary on MM - An American Story - 07/23/14 
Spontaneously heard this on the radio last month!


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


4 comments:

  1. Simply said: Jules, I love and adore you!! <3

    ReplyDelete
  2. Love you more Krazy Kristin!!! xoxoxoxox :)

    ReplyDelete
  3. Your words bring me such joy as I wage my own battle with this ugly disease. Love you.........Carole Leigh

    ReplyDelete
    Replies
    1. Sooooooo incredibly wonderful to hear from you Carole Leigh! You're on my mind and in heart every day! So glad we are in touch. We'll beat back this MM monster forever!!! love and hugs xoxo

      Delete

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.