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

Thursday, February 5, 2015

The New New New New New (unwanted) Normal

Hello February~

So I've been thinking (as I always do), specifically this time about how my life has changed in the 5 years I've had Myeloma. I've been thinking about how different I am 5 years later after diagnosis, what I can do and no longer do, and how I do what I do has changed... and frankly, I don't like it.

I am trying to come to terms with the incurable factor of Myeloma. I say the words, but it doesn't sink in... except when I've receive not so good news at my recent monthly oncology appointment. Then I get a slap-down, eye opening reality check that I really do have cancer, it's incurable and I have to keep increasing levels of chemo to stay alive. My blood test results below...


So humor me and forgive me for a bit of whining here. But my "disclaimer" first:
Of course, goes without saying, I am so very grateful for still being here, for all the fantastic medical care I have received over the past 5 years, grateful for all the loving, supportive, caring people in my life, and grateful for every day I wake up and can function (no matter the level of functionality or dysfunctionality lol). But dang it, I am (not so happily) coming to terms with my situation and limitations... and it's been 5 years!

I am frustrated that I am so limited everyday by how tired I am, how fatigued I am and how little I can do as a result of being so tired and fatigued.
I am frustrated that all the side effects from my medications (and this cancer) limit my ability to spontaneously go places, do things I used to do, play, work, and just live and laugh as I did.

I don't like that I don't feel as funny, light-hearted as I used to...life just isn't as funny now as it used to be.
Life isn't as carefree and playful as I used to try and make my life. This may sound trite and superficial to you, but I've always been such a deep, thoughtful, analytical person, that I wanted the other side of my life to be light and breezy, sunny and silly, spontaneous and goofy. Cancer takes a lot of that feeling away, as a cancer diagnosis, treatment and the "new normal" isn't that fun or funny.

Life is just more serious now
Life is more painful
Life is more exhausting
Life is too full of too many "what ifs" and "whens"
Life for me is too much time in the bathroom or wondering what I can do before the "volcano" erupts
Life for me now is centered around which daily medications, when I can take them, what I can eat that won't cause GI distress
Life is "eating to live", but knowing "chew and poo" is looming

Life now is about looking at my life and wondering what the heck happened to me and why
Life now is wishing I could spontaneously saddle up and ride on a beautiful day
Life now is the awareness of too many changes, and too little time left
Life now being aware that my situation won't magically get better, my cancer won't disappear, or "be cured"
No, I am not being pessimistic, or being negative. I am an educated realist regarding the course of Myeloma


Life now is centered around taking meds and wondering how they will affect me, and I'd better be close to my bathroom or another... but that is also (by choice) a huge limitation to me. I (choose) to not be out and about just doing whatever, and then suddenly realizing I need to be in the bathroom NOW!!!!
See, my meds, IgA Myeloma, my Stem Cell Transplant, continuing chemo, etc, have so dramatically changed my GI system that I just can't spontaneously go places and do things as I once did.
Of course, as I write this, I just caught a glimpse of a horseback rider on the ridge, riding through the oak trees on this beautiful day. Why "can't" I do this? Because I'm too tired, too weak, too fatigued, too nauseous, too dizzy and can't risk a fall as I have fragile bones now, and what if my GI system screams NOW and I'm not close to a bathroom.. maybe I'll just buy one of these thrones since I spend so much time there!

I wonder what my color options are ;)
Ok, enough lamenting. Life is good for what it is. I still can clear my "system", not eat (so no chance of GI reactions), and go into work for a few hours, impact a few students' lives, see my colleagues that make me laugh and inspire me, and do a few things around home with my family and animals that make me happy!

My blood tells all:
WBC = 2.5 (normal 4.0 - 11)
ANC = 1.1 (normal 1.8 - 7.7)
Received a Neupogen shot at this last appointment

M-Protein = 1.25 (normal = 0.0 zero)
IgA = 1450 (normal = 70-400)

Yes, my Doctors want me to increase Revlimid
Yes, my Doctors want me to add in Velcade (IV or Sub-Q)

Yes, I should
No, I am scared of more side effects
Yes, I want quality of life, not more time in the bathroom, and additional Neuropathy

So I am alternating 4 days Revlimid 15mg, with 3 days Revlimid 10mg weekly for 3 weeks, to get my body ready to accept full 15mg next month (along with all the other meds I take: Acyclovir (anti-Shingles), Mepron(Atovaquone) pneumocystis pneumonia preventative, and my nemesis bi-polar Dexamethasone

=========================================================
February 5, 2015 is the 5th anniversary of my dear Mother's death 
from evil Alzheimer's

And so I carry on- 1 pill, 2 pills, 3 pills, 4 pills, 5 pills at a time.

5 horses...

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



8 comments:

  1. Julie,You are one of a few people I know who has a right to occasionally
    have a down day but you will be back you always do and as positive and
    as caring as always.Keep smiling and know many people care and are
    praying for you.
    Ron

    ReplyDelete
    Replies
    1. Thank you Ron for your continued support and encouragement. Some days the reality of my situation really hits me... then other days, I'm thinking it's all just a surreal joke. It's crazy how unpredictable my side effects, and days are, but I am grateful to still be here! Thank you for always checking in Ron!

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  2. I'm sorry Julie...not the news anyone wants to hear, and I think you beautifully express the reality and true feelings of so many. It's just plain hard dealing with Multiple Myeloma, in every way, and not the way one envisions their life. We all hope that current treatment options will help patients hold on until the day when something changes the status from "incurable" to "curable"!

    I laughed so hard at the picture of the leather "potty" chair...that looks awesome! Thanks for keeping your sense of humor...we all need that, whether caregivers or patients! I'm praying your new regimen is tolerable and that it effectively beats the MM beast back into submission! Stay hopeful never forget to stop and smell the roses whenever you can. Much love from EZ and I!

    ReplyDelete
    Replies
    1. Hi Linda! thanks so much for checking in and cheering me on. Hoping all is wonderful in your beautiful life. I miss your blog updates, and beautiful pictures. Hope you return to updating on your and your family's adventures once in a while and also on EZ's status. Is he still on Rev maintenance? Nice to hear from you! xoxo Julie

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  3. Yes Julie, you write about this so well. It's such a sad reflection and you've actually made me feel better now. What is it about not being able to come to terms with it? I don't know, maybe you're not meant to.

    I hope you manage on your new doses of Revlimid. There seems to be no getting away from that number 15! You are such a positive person and you have such a great sense of humour so surround yourself with the people who care and be happy.
    xx

    ReplyDelete
    Replies
    1. Hi Vivienne! thanks for checking in! I am overwhelmed with Jimmy's medical situation, but he's one LUCKY guy to have you as his #1 gal taking care of him, supporting him, and being there for him! I love your blog updates, and I'm going there now to check Jimmy's status. You two hang in there, and it will all be a distant memory in no time! xoxo Julie

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  4. Hi Julie,

    Sorry to hear about your ongoing GI issues. You might want to read this article from The Myeloma Beacon on treating Revlimid induced diarrhrea.

    http://tinyurl.com/q5ob5js

    Best,

    Steve

    p.s. -- Greek yogurt worked wonders for me a couple of years ago when I was suffering IBS-like issues....lost 40 lbs in about 6 months as food would just go straight through me, until I began eating the Greek yogurt for breakfast everyday. Had great results in just 4 or 5 days and was back to normal in about 10 days!!

    ReplyDelete
    Replies
    1. Hi Steve, thanks for checking in and commenting. Do you have a blog also? I so enjoy following MM comrades :) So timely your comment, as my hubby just stocked up on Trader Joes greek yogurt. I don't regularly do yogurt, as sometimes the lactose is too much for my system, but do eat a cup a few times a week. This week has been better for me, with the 1 week Rev break :) Let me know on my next post if you have a blog I can follow! Thanks for commenting, Julie

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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 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.