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

Sunday, April 5, 2015

Perhaps I should Buzz my Goldilocks...Longer Hair and Fake Normalcy is Status Confusing

Happy April everyone!

I am twisted enough to have considered posting on April 1, April-Fool's-Day, something like: OMG! I'm cured! Myeloma is gone! But then I realized that would be a bit too twisted! So I reined in my silly humor, as honestly, rare is the day I feel "good" and that would have been way too misleading.

I'm always surprised when people think I'm ok/off treatment/cured, based on my external appearance. Perhaps it's because I always fix myself up, chat it up energetically as I've always done, and for about 6 months now, I've let my hair grow out. Further, I don't have a tattoo with my Myeloma diagnosis ;) and most have no idea Myeloma is incurable/terminal. So Goldilocks and Revlimid, you confuse everyone!


I had my monthly Hema/Oncol appointment this past week. We reviewed my blood stats, myeloma numbers and April treatment options. We also discussed all my very unpleasant (multiple) side effects. So do you think I wanted to increase my chemo dose and type for this next cycle? Do you think my Dr wants me to?
The answers are:
Me= NO!
My Dr = Yes, but No.
Me= I'm kinda of "terrified" of adding additional and different chemo/treatment options. At least my current side effects are predictable and known. Adding additional chemos to Revlimid frankly scares me... a lot.
Me= not brave any more.
My creative combo of Revlimid 15mg alternating with Revlimd 10mg is only kinda, slightly, hardly making a dent in my myeloma numbers. IgA went up this month (boo). But, my M-Protein did go down slightly (yay!) My WBC's and immune system continues to be challenged and very compromised.

My treatment life

Yes, if I increase Revlimid to full on 15mg and add Velcade or another chemo, along with current or increased Dex level, to create a "chemo-cocktail", maybe my myeloma numbers will improve. Maybe not. And at what physiological cost? Much more yuckiness, GI issues, Neuropathy, Fatigue, Nausea, Dizziness, an even more compromised immune system and the risk of becoming Neutropenic... and a much more reduced quality of life. I hardly do much now lol... what would a chemo-cocktail do to me. Force me on disability? Take away what little fun times I have now?


Well my Dr and I decided not to change anything... yet. She's very concerned about what an increased dose will do to my already debilitated immune system. And we both agreed that the slight changes to my myeloma stats were still ok for now. I know what most of you are probably thinking... What are You doing Julie!.. crank up the chemo and hit myeloma hard so your numbers will go down. Ugh, truly, I'm just so sick of feeling sick and I don't want to feel sicker. I'm always processing the concept of "quality vs quantity".


Here's my current stats:
  
WBC's = 2.8 (low- why I feel so yucky and fatigued), 4 - 11 = normal range
Platelets = 120 (low), normal range= 130 - 400
M-Protein = .96 (yippee! a bit lower than last month), normal = Zero
IgA= 1360 = (up from last month :(  70 - 400 = normal range
ANC = 1.6 (low), normal range= 1.8 - 7.7
So far my kidney and liver function remains stable. Must be all the endless hydration I do!


So that's my update for now.
I do what I can do on the the days I do what I can. Everyone asks why I'm not on disability or retired. I love what I do professionally! I still make a difference in a "few" student's lives, I have a brand new, full window "corner office", I love my colleagues and campus, and it's really not an easy decision to say good-bye to an over 30+ year career. Besides my family/animals/home life, being a college counselor has been my life. It's just not that simple to close the door One Final Time.
Myeloma will dictate when...

Jim and I had an appointment in the "city" on Friday. I decided on an instant bucket list moment and took the LONG way home :)



And here's a bucket list item who's time has come and gone for me, 
But I happily live vicariously via extraordinary people: 
2011 All American Quarter Horse Congress Freestyle, Bridleless presentation



 Happy Easter, Happy Spring



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

  1. ronApril 07, 2015

    Julie,you sure have a great work ethic and I know you are helping students by
    words as well as example.Don`t know enough to comment on the drugs
    you are taking but a doctor friend of mine says new better drugs are coming
    frequently-so stay well and stay positive as you do so well!
    Ron

    ReplyDelete
    Replies
    1. JulieApril 09, 2015

      Hi Ron, thanks for checking in :) yes, there are new MM meds being developed all the time. Guess if I was going to get this stupid cancer, at least there is more awareness of this type of cancer now and new meds being developed all the time. Not sure how long I can work, but one day, week, month, year at a time. Hope all is great with you and your family!

      Delete
  2. UnknownApril 13, 2015

    We love you and are thinking about you! Stay strong, love Dorothy Williams and Jan and John Revilak

    ReplyDelete
    Replies
    1. JulieApril 15, 2015

      Aww Dorothy, Jan and John! Thank you so much for checking in and reading my ramblings! I owe you all a call. When I'm not.... you know where... I'll call. Hoping all is great with all of you. Love you all so much! xoxo

      Delete
  3. LindaApril 15, 2015

    Love your funny pictures...roller coaster, seal on potty, lab results and chocolate bunnies! Don't know where you find them but totally represent and make me laugh! That Stacy Westfall video is unbelievable! Is she doing all of that with her legs and torso? How on earth? And your beach pictures are gorgeous...think I would always take the long way home!

    Sorry none of your decisions are easy ones. Goodness we need a cure for this wretched MM. I'm certain you make a different in more than a "few" students' lives, and you need to enjoy that corner office. I say stay positive and counsel as much as you can!

    Love hearing from you...can always expect a few chuckles! Praying you can find the right mix of meds to beat the beast back.

    ReplyDelete
  4. LindaApril 15, 2015

    *difference not *different (sorry...need to check more carefully before publishing)

    ReplyDelete
    Replies
    1. JulieApril 15, 2015

      Thanks so much Linda for appreciating my twisted humor and silly pictures. I must admit I giggle quite a bit when I find these funny, but so appropriate pictures! Yes, all the side effects are so challenging, but the good days are pretty good. Hoping all is great with your beautiful family!! xoxo

      Delete
  5. Slow MarksMay 21, 2015

    It is normal to lose a few dozen hairs a day, this is part of the hair renewal process. However most people suffer from excessive hair loss at one time in their life. My cousin is using the best hair product, in case you need any help let me know.

    ReplyDelete

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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.