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

Tuesday, January 17, 2017

New Treatment Plan and Remodeled Dreams

Hello 1.17.17

We all have dreams. Dreams and Goals. Dreams, Plans, Aspirations. Those dreams you've always dreamed about. Big or small. Earth-shattering or minuscule. Tucked away in that quiet sweet-spot of our minds and spirits.

No matter your "status" in life, everyone has "dreams". All those "things and ideas" that inspire us, we wish for, plan for, and work so very hard for, during our lives. For some, those dreams came true sooner than later. For some, those dreams, barely realized ever. For others, dreams are reinvented, redefined, revamped, transformed and modified. Our dreams evolve due to life's complex speed bumps in our lives, whether major or minor, but always interrupting our lives.

As I process my ongoing, never ending cancer status, always mulling over the Why, How Come, What's Next, the complexity of "choices" within really having "no choice", I never forget my life's goals and dreams. My dreams are not "big". They are not impressive. They don't involve huge worldly accomplishments or huge worldly travel experiences. They are small dreams, actually almost "childlike". Perhaps because psychologically I "grew up fast", and had to process life deeply early on, unrelated to cancer. I was often referred to as an "old soul". My goals, different from my dreams, were to always be kind, insightful, sensitive, caring, deeply interested in others, their lives, their goals and dreams..., hence I became a Counselor. I wanted to make a difference in the world in a small way, with humans and animals. And I did. And I feel good about all the "goals" I've accomplished.


But then there are my dreams. My "future", which I never thought would be stolen from me mid-life, has been stolen . I never thought I would lose my independence, my health and my ability to really choose the direction of my life. I was always spontaneous, but always a careful planner. Work hard and be directed while "young", reap rewards of fun times later. But now, due to how MY body has reacted to MYeloma, how MY body has reacted to treatments, and how MY body has limited Me, most of my dreams have been ambushed, derailed, cancelled and are not possible any more. Literally not physically possible any more. I'm not angry, I'm not whining, I'm not depressed, I am sharing my actual reality. I just cannot do what I had planned to do in the 2nd half of my life. It's a fact. I've reconciled it. I haven't truly accepted it, but I know (for physical safety reasons) I cannot engage in most of the dreams I had dreamed of.


So with encouragement from our kids, we're reformatting, readjusting, rethinking, remodeling, revising, adapting dreams. I'm accommodating, but not accepting cancer. I'm adjusting and amending the journey. Creating new options that include what I cannot change about what myeloma has done to me and my life.


One of those dreams of mine is a Red Barn. Yes, a simple Red Barn. There's just something warm and inviting about a Red Barn. A Red Barn stocked with bales of aromatic alfalfa and grass hay. That scent. So real, so honest, enveloping your being with a sense everything will be ok. You just breathe in peacefulness. If you love nature, animals, horses, wildlife and the sweet scents of the outdoors, you know what I mean. There's just something about the "ambiance" of a Red Barn. That rustic, vintage aura of a slower, real life. If you are not a farm, or ranch person, then perhaps you know this feeling when you visit a beautiful botanical garden, a country winery, a colorfully landscaped museum... it nourishes your being, your soul. You take deep refreshing breaths, and feel alive and real. Life makes sense.


Knowing the myeloma road I'm on, knowing my reality, knowing 7 years with myeloma is no small feat, not knowing what's next or how much time I may have left... we're remodeling our original, 39 year old white barn. It's a make over, not a new barn. Replacing the white panels for red panels. Redoing the roof. Red Barn walls, inside and out, white trim. Big barn doors, inviting you in. It's just a simple barn. Horses have never lived in our barn, nor will they ever. Barn stalls are "horse prisons" to me (unless of course, they have open access to a large outdoor corral!). My daily view will be a Red Barn. A simple Red Barn that invites you to sit and bask in the sun. Walk through it, and breathe in the sweet aroma of baled hay. Walk through it and hear horses nickering, birds chirping, dogs barking, flies buzzing. Walk in, and feel real. Real life.

Not done, a way to go, but sure a fun process!
Our son is our "idea man" and "construction coordinator".
So awesome to have his insight, creativity and love.

And so, I've been all too consumed in thinking about my new, upcoming treatment plans. I posted my options in my Friday the 13th post, and I really do appreciate all your spot on feedback, reality checks and thoughtful comments! I've also posed my questions in online MM groups, and really appreciate all the honest and encouraging feedback there too. So what have I decided? One more round of Pomalyst at full strength 4mg, adding Velcade, continuing with Dex steroids. I have another Dr appointment this Thursday, and first Velcade shot/infusion thereafter. Yes I'm scared, yes I'm worried, yes I hate new and different side effects, but reality is myeloma currently is "winning", and I have to brave up, and take this treatment process more seriously. Everyone is encouraging me to start the Darzalex, stop worrying so much about the infusion reactions, and stop playing around with my "aggressive" type of myeloma. Ok, ok... I'm working on it. I will, start next month.



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



7 comments:

  1. Thanks.
    I smelled grass and alfalfa hay as I was reading your post. Having had to give up cattle farming, I wonder if anybody scents their homes with alfalfa and molasses? Sadly, even an occasional manure fragrance (lol) wouldn't be unwelcomed if you could control when it was and wasn't present. And then there's wet dogs.

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    1. Hi Craig, that's funny! Thank you for the checking in and the great comment. Actually I did see candles in horse and barn scent online, just as you mention! Thank you for appreciating my barn story. If you are a myeloma patient, please share you story. Thank you for commenting!

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  2. Hi, I just read your blog & FB post. I'm reading between the lines....that aren't so blurred. This road we are on isn't so easy, yours is harder than mine. For some reason we were chosen to fight a hard fight. Doesn't seem fair, isn't easy & the things we wish we could do. Makes us really take stock of our mortality. No one really knows how long they are here on earth, but the eloquent way you have delivered your message comes with a lesson we all love & can learn from. Unfortunately most take life for granted until a life altering event happens. I love you my friend. I know the pain of the side effects, the pain of treatments, the pain in your heart when you see your loved ones anguish over your pain. It seems like a never ending circle, but that love will never end. We will be praying for you & for your family. Please keep me updated, and you can turn to me to vent, to cry, to laugh & to talk. Wish I was there to sit with you. I love you Julie.

    Love Always & Forever
    Marri

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    1. Thank you so much for your spot on comment Marri! I am grappling with the "why bad things happen to good people" issue, and I just don't get "why" you and me, and others, etc. O well, one day at a time, medicate on, fight on, and stay positive and optimistic right. Thank you for posting Marri, and all our years of friendship!! xoxo :)

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  3. Julie, I am friends with your cousin, Lorin and followed his FB link to your blog. I will bookmark this and try to follow you. In May, last year I was diagnosed with a blood protein that may be a myeloma precursor. So far so good with me, but I am monitored and tested every 5 months at Mayo Clinic, we live in MN. It is a gut suckered punch. I admire your ability to blog about this. I have a blog that I have neglected, favoring Facebook posts. God bless you and keep writing, never know do we? Some of us are given heavy loads to carry, why, we never may know this side of the grass. My mother too died of Alzheiners. Never knew my father, a WWII pilot, gone 5 months before I was born. Lost my only son/child in 2008 to diabetes. I do not believe we are given tragedies to grow stronger. But I do believe God reaches thru all to us. We can only do our best to cope, conquer and above all never cower. I can sense from your writings that you are on that path. Be still when you must, be strong as you can, endure and hokd!


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    1. Hi Pat, thank you so much for checking in and reading my blog. So sorry to read you had a "blood protein" scare. Did they give you any additional detail as to what it might be? Hopefully nothing at all, and just "errant" labs. I am so very sorry to read of all your losses. It's crazy how everyone "has a story" and no one is "immune" to tragedy and suffering. Alzheimers is just awful, and I hated how it affected my dear mother, Lorin's aunt. And you and Lorin with the tragedies of your WWII fathers... so tragic! And your son. I don't know which of all your stories is the saddest. I do think a parent losing a child would be the most awful, and my mom-heart grieves for you. Thank you for sharing so much of your life and story with me Pat. And I do hope your blood "behaves", and your labs are all "normal" from now on! Thank you so much for reading, commenting and sharing Pat. xoxo

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  4. That last is hold, excuse typo, my tablet keys

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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.