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

Tuesday, September 6, 2016

Some Days Imodium, Some Days Prunes

Hello 9.6.16

Oh Myeloma, you are becoming too predictable in your unpredictably! I make plans, I change plans. I think I'm ok, I'm not ok. I feel well one moment, and awful the next. I can "tell" now when I am "worse", I can just "sense it" myeloma. Then my lab results confirm it. I've sure learned a lot about life, myself and my physiology in 6 years 9 months. I know my body, I know what's happening.
Truly now, living life one day, one week, one month at a time.


In 2008/2009 prior to diagnosis, I was in denial. Actually it was "selective ignorance". With little cancer history in my family (except 3rd gen cousins on my Dad's side with breast cancer), it NEVER crossed my mind that my symptoms and side effects then, represented anything more than "normal" physiological changes, allergies, stress and calorie-counting, minimalist eating (almost vegetarian, as I love animals too much to eat them). Being the intuitive aware person I am, I was very aware of my exhaustion, extreme fatigue, crazy bleeding, losing weight, dizziness, headaches, GI issues, food allergies, bone pain, etc, but I "ignored" the symptoms and wrote it off as "too busy at work", "too busy with family and animals", " it's just this time in my life, getting older", "allergies", "female change of life", blah blah.
Stupid me! Bleeding out for years is just Not normal! I look back on some of my "bleeding out" experiences with humor and horror. Sometimes I would just stand over my sink and just let my nose bleed until I felt light headed, thinking "ok, nose, time to stop bleeding from "allergies". Stupid! Times during "that time of the month" I would bleed like crazy (I'll spare you the details).., I got so I would only wear black pants, "just in case". I wouldn't let myself think something was actually "wrong" with me. I really truly just thought it was a "phase in my life".
Eating the "healthy rainbow" sure didn't prevent myeloma in my case!
Fast forward to now.
I can sure tell now when myeloma is "winning" and the meds are not stronger than the battle they are fighting. I can just feel it. The Fatigue. Achiness. The lack of physical "helium". The Headaches, Dizziness, GI issues, and the Unquenchable Thirst. Ugh, I drink water like a fish, and still I feel so thirsty and dehydrated. And then..., my lab work confirms my intuitions and suspicions. WBC's low. RBC's low. ANC low. Platelets low. Hemoglobin low. Myeloma markers up. The return of GI issues. Yep, myeloma you're "slightly" winning now. Crazy how I can feel you brewing, swirling, churning up disaster throughout my body.

Yet, I still feel so disassociated (mentally) from this whole experience. I "force" my life to be "normal", fun and productive (on good days that is). I just go about my life, saving other lives, as if my life was ok. I am not a panicker. I'm not a worrier, and I have really reduced most all stress in my life. Actually, I have always tended to under-react to things I should be reacting more intensely too. More than ever now, I am following my old adage "You Can't Control The Things You Cannot Control, So Analyze It, Understand It, Accept It, Move Forward". But there are those times when suddenly it hits me: I HAVE INCURABLE CANCER. I know I am going to get sicker than I ever expected, and I'm going to leave this earth... sooner than I "planned"...
I physically feel you creeping further into my life myeloma and I realize I have little to no control. It's a very strange, surreal feeling. After 6+ years of treatments, 7+ years of symptoms, I "know" you myeloma! You are the monster that lives within me.


So with all the reading I do about myeloma, all the blogs I follow, all the posts I follow, all the research I read to stay informed about current and new medication options, it hits me there will come a time I will exhaust all my medication options. Wow, it hits me: I REALLY am not in control of my body. Medical science and medical research (and all the brilliance behind that...) controls whether I live or die. So when I have run through all the myeloma meds.. What then? Start over again? Go back to meds that stopped working and see if they may work again? Try higher doses of ones I've become "refractory" to? Agree to another stem cell transplant, if I am even eligible? Participate in clinical trials? What happens when I run out of options? What would it be like to not be in treatment at all? What would happen if to me if I didn't have anymore chemo or medication options, or if at some point I just reached my limit of being in treatment and decided, ok, enough. No more treatment, no more meds... let nature takes it's course...

I asked my Doctor this last month...

Here's how the conversation went (after going over all my labs and concluding I will need to change to another treatment soon).
Me: "So my amazing Doctor, let me ask you a question that I know you don't want to answer"... "Not to worry, I have NO intention of doing this", I reassured him... "but me being me, I need an honest "reality check"...
"What if I decided to not treat any more"... "What if I decided that's it, I'm done with meds, tired of side effects, and I just want to live life "freely"... (I take a breath, and so does he and so does my hubby Jim)... I continued, "So How Many Years Would I Have, If I Decided To Go Off All Meds?" .... pause ... "Months", he replied. I thought he may not have understood what I asked, so I rearranged my question and restated it: "Sooooo, if I decided to not treat anymore, how many YEARS would I have?"

He leaned closer to Jim with a smile and said, "You know I am not God, and I don't have a crystal ball, doctors are only human"... he continued after a pause... "If you chose to not treat any more, and go off all meds, you would have months"..."Your treatment medications are keeping you alive".

Saaaaay Whaaaaat? Process Julie, Process. What? Huh? Ok, move forward, respond.

"Ohhh, wow... really...well ok..."months"... "Soooo... if we really wanted to do that Hawaii trip I keep mentioning, it's time, right?" Me being me, I need further reality in my face...

"Yes", he replies, "do whatever trips you want, but be aware your immune system may not be able to handle all the potential infections out there"... (We discuss and recount what happened in 2012 when we went to Hawaii and was sick for most all of the trip.)

"Travel may not be the best thing for you Julie, but I understand", he comments. "It's not necessarily the myeloma itself that will "get you", it's the (potential) complications and (potential) organ failure and compromised immune system, that "gets" most patients..."

Process, Julie, process...

I ask: "so when would be the best time for me to take a trip, if I decided to take the risk?" He replies, "Actually, the best time would be between your upcoming medication change."That would be an ok time to take a little break, go on a trip, then begin the new treatment"... "But be aware", he continues, "something could happen on the trip (like 2012), and this trip may not turn out to be what you "expect" it to be... your energy, stamina, compromised immune system..."

 Process, Julie, process...


I love this Doctor. He's intelligent, insightful, caring, thorough, goes along with my blunt, direct and joking personality. We understand each other. He thinks I'm a bit "off the wall" and nutty, and that's good, I am. I'm not the typical cancer patient. I'm verbally direct, mentally strong, and want reality. Always, reality.

Jim and I drive home just like any other appointment. Navigating the freeways distracts me and forces me to focus on safe driving. I always drive. "So Jim, did you hear what I heard?" Jim's eyes are moist and emotional. "I did", he says... "Did I really hear "MONTHS" I ask him. Jim is having a hard time. We're trying to process what we heard. Did we misunderstand. Hear wrong. We talk about what we "think" we heard. We talk about what it means. Surreal. Unbelievable. Hard to digest.

Process, Julie, process..... Myeloma is Incurable. I've known this from the moment of diagnosis. Myeloma is "treatable", but myeloma is chonic, myeloma is forever. Myeloma changed my life forever and continues to.
Process, Julie, process...

  ****************


So it's been so hot I haven't taken my lil bug out for a spin in a long time. The other evening, I finally felt I had the energy to clutch and shift, so lil "Bucket List Bug" and I went for a short spin around the block. 

Sunset over Bug

***************

And we have a Rooster! 
Our little grayish/blackish chickie became
"Domino" the Rooster. 
He crowed his first "cockadoodledo" the other day. 
So adorable!!

Baby Domino! Back then, I called him "Charcoal"
Isn't nature amazing!!

One of our new girls- "Henrietta" :))



And so...
That's my life today, 9.6.16.
How's your life, your challenges, successes and joys? What plans and goals do you have? Let me know by leaving a comment.



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



10 comments:

  1. You're awesome Julie! You inspire me. I sometimes think of your posts when I'm teaching the little ones, and I am more patient and kind.

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    1. Aww thank you JD for your heartfelt comment. I'm so glad you enjoy my posts and they inspire you to inspire others in your classroom. You and Jana inspire me with all you are doing to "save the world"! Hope to see you 2 again soon. Thank you so much for your comment! xoxo

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  2. great post. I agree, how you're viewing the disease matches my mindset pretty closely. when I was diagnosed, I thought my low energy had to do with me giving up meat. but it was something else, obviously. anyhow, thanks so much your comment/note, I'm glad I've now discovered your blog. be well, matt

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    1. Thanks so much for checking in Matt and commenting. I've followed your blog for sometime now, and I think I am a year or more ahead of you re our Dx dates? We have a lot of similarities in our side effects, etc. I will comment back on your blog, just in case you don't see this. Best of luck on your MM fundraising climb of Mt Kilimanjaro :))

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  3. You know J.D. is a huge follower of you Julie and when he told me he wrote a comment I just had to join in. LOL. You have inspired me in many many ways. I believe the most special way has been the way you always encourage others. I remember when you first began encouraging me in my life and as soon as I became a healthier individual I began encouraging others as well. Whenever I encourage my clients or others in my life I think of you and how you did the exact same thing for me. I feel like I share a piece of you every time I do that. I love you so much and am forever grateful for you being there for me at my darkest hours.

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    1. Jana!!!OMG!! I am so "honored" you left me a comment :)) Thank you so much for reading my "rants" and joining in on the blog fun! You and JD are just so very special to me, and I love that we have the friendship we do for the zillions of years we do! I am thrilled to know you are carrying on my legacy of inspiring others to be their best. You are such an amazing person Jana and I am incredibly proud of who you are and what you have accomplished in your life! Thank you so much for reading and commenting and I will email you for a get together on my chemo break week! Love you so much! xoxo

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  4. Julie, what a sobering reality. I hope that you chose a new course of treatment...to keep fighting and beating the MM back with new recommendations from your doctor. Your husband, family, friends and colleagues love you so much and are holding you up in prayer! It's good to see you outside with your beloved Bug and critters.I apologize for not blogging in forever...about three months ago we decided to realize our retirement dream, the one MM tried to steal, and move to the NC mountains. Our house sold one hour after the first showing, for full asking price! We are out of Wake Forest on 10/28. I've thought often "but what if...", yet we choose to live day by day and make our plan based on what is. We look forward to cool breezes on covered porches, and long walks off the Parkway. I promise to share pictures. You stay positive and keep fighting for something that works! Love and prayers flooding the air waves between NC and CA!

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    1. Linda! I am so happy for you and EZ and your family. Your move sounds fabulous and I can't wait to see pictures! Nothing better than realizing our Bucket List dreams, and you and EZ are doing that! Sounds like such a beautiful area. I'll have to google it. Take care, good luck with the move and I look forward to your update! Thanks for all your continued support and checking in! xoxo

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  5. Hi Julie, I check your blog from time to time. You are always in my heart/mind. You are still finding ways to inspire and motivate me. I want you to know that I will forever be in debt to you. You believed in me as a student, and helped me find my passion in life. When I began attending COC I had no direction, but you came along and changed that part of my life. HAHA! 1. I graduate from COC. 2. Attended and graduated from the university of my dreams. 3. Currently, serving students as a Paraprofessional. 4. Will be pursuing an MA in Educational Counseling. Your life will always shine through me/others as we positively impact the lives of students.

    Sincerely,

    Your counselor in trainee

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    1. Hi my successful student following your dreams! Please let me know who you are! I would love to reminisce about all our meetings that have brought you to such happiness and success. Thank you so much for checking in and letting me know I made an impact in your life :)) Means the world to me to know my passion for my career has been passed forward to another, who wants to inspire and impact others. Congrats and thank you, and please let me know who you are. You can email me at Missy.Myeloma9@gmail.com xoxo

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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.