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

Monday, May 25, 2015

May Madness and Revlimid changes To come

Hello 5.25.15

I think I'll continue on my "less is more", semi wordless pictorial blog theme, as there's so much to say, but I just don't have my usual witty way to convey all this crazy cancerous stuff consuming my life. 
In addition to the passing of our dear family member Claudia (see previous post), I had several others in my circle pass away this month. Too many, too soon, so cruel... makes so little sense to me.


As for me, May was medically challenging. Seems like this Revlimid cycle went on and on and on. I even "cheated" on my Dex schedule, as I'm just so sick of feeling sick and so tired of being tired, and so over dealing with all of this. I didn't take my regular (mg amount) Dex dose, and I skipped a few weeks, and then when I did go to take it... lol... I discovered I had never reordered my prescription, so I couldn't take it anyway! I know... shame on me! It's getting more difficult all the time to have "normalcy" and "normal" activities in my life, so this month I cheated on the Dex (not the Rev). It's gotten so bad, that to go anywhere anymore, I can't eat beforehand or during any event. I went to a wedding up a very remote canyon and realized how awful it would have been had I had a GI emergency... I ate a few bread-rolls and left not long after the ceremony. In my pre-cancer life, I would have been one of last off the dance floor...

So here's my current life in pictures:

My "chew and poo" life


I start with these
And/or this
Then move on to my BFF
(I like the CVS generic :)

Sometimes a "shot" of the Liquid is just easier
than swallowing ANOTHER dang pill


I find myself shaking my head all the time


How the heck did I wind up in this ridiculous situation




So at my last oncology appointment, I suggested to my Dr that I go full on 15mg, but do 2 weeks on/2 weeks off (instead of 3/1) to give my challenged body a break. Yes, I know... word is you're supposed to hit cancer hard and heavy... but I am just so tired of feeling awful and having such a limited life...  it's all about finding treatment I can "live" with.




My life in numbers:

WBC's = 2.7 (low- why I feel so yucky and fatigued), 4 - 11 = normal range
Platelets = 117 (low), normal range= 130 - 400
M-Protein = .88 (yippee! a bit lower than last month), normal = Zero
IgA= 1320 = (up from last month :(  70 - 400 = normal range
ANC = 1.3 (low), normal range= 1.8 - 7.7


I'd sure like to be on this journey!

So I'll start this new Rev (15mg) cycle in a week... and let you know how it goes. Maybe 2 weeks of a solid higher dose might work better than 3 weeks of a slightly lower dose... 


Mother's Day 5.10.15


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


6 comments:

  1. I know you are so sick of feeling sick. Hope the new regimen of 15 mg. two weeks on/two weeks off works for you, and that you can enjoy being away from "john" for awhile!

    ReplyDelete
    Replies
    1. Hi Linda, thanks for always checking in :) yes, I am hoping for GI calm with my new 2 + 2 plan! What maintenance level Rev is EZ on? Bet you have fun plans for this summer!! xoxo

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  2. Oh Julie, you sound like you are just over everything. I hope the regimen makes a difference so you can live a little.
    Think of you often
    xx

    ReplyDelete
    Replies
    1. Hi Viv! yes, so over this... I would just love to go back to my pre MM life... but what a silly fantasy. But I know as yucky as my side effects are, I am so much better off than others. So very happy for Jimmy's Remission status! wow! what an amazing recovery he has had. I will write you back asap! xoxo

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  3. Julie,Sorry you are not feeling better.I know you have always been such an
    active person with your love of the outdoors.Stay encouraged,You are always the best I know at that.
    Ron

    ReplyDelete
    Replies
    1. Hi Ron, thanks for always checking in and encouraging me! Hoping you're having a wonderful summer with your family, traveling and living life to the fullest!

      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.