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Friday, December 28, 2018

Because of You Myeloma, This Is Me Now

12.28.18

Wow! Today 12.28.18 marks the last of my on the 8's posts (but NOT my last post for the year :))

For those that have been loyal followers for years, you know that I have symbolically posted on the days representing my number of years of survival, hence this year on the 8's, my 8th year of surviving, and living with Myeloma. Yes, my 8th year is rolling over to 9. Hard to wrap my head around this "accomplishment". 8 going to 9. For me, and all myeloma survivors, each year is such a milestone of so many things "achieved", survived. In just 4 days, we and all of the world, will be rolling over to 2019! Happy almost New Year to all of you!


Yes, I celebrate my good fortune daily. I celebrate that I am still here, 9 years after my deadly Multiple Myeloma diagnosis 12.30.2009. But deep inside, to tell you the sincerest truth... I am not always "celebrating". I have such an intense variety of emotions and feelings regarding my "not so new, unwanted, new normal"... but I hesitate how much I should share. I "know" many of you, but as with any public blog tossed out to the universe, I really don't "know" who all my readers are. Many of you have let me know that you appreciate my thoughts, my honesty, my silly humor, my candor, but how deep, how honest should I be on a public blog... that the entire world can read... is what I question all the time.... Well here goes my end of the 8's raw, unleashed, unfiltered thoughts... My Life of Opposites:

Beneath all my happiness, I really am quite sad.
Within all my gratefulness, I'm also pissed off.
I am constantly questioning if I am living, or merely existing?
Within all my amazement of my incredible survival, I am exhausted from fighting.
Steroid days have me "high on life".
Crash days have me questioning "everything".
Within all my survival "achievements", my life as I knew it, was stolen.
I love all my animals, and they give me joy and laughs, but their care is now overwhelming.
I love my horses, but they are a constant reminder of what I CANNOT do.
Am I living, or just existing?
Am I prolonging life, or extending death?
Am I extending life, or prolonging death?
I love and appreciate beautiful sunny days, but the earth's natural beauty is a constant reminder of all the things I am MISSING out on, and can no longer do.
There's so much I want to do, but I am immobilized by side effects and fatigue.
I love seeing everyone enjoying life, but I'm envious of their health and freedom.
I have a love, hate relationship with food. Without it, I wouldn't survive.
With it, I am "tortured" by the unknown, surprise, often debilitating GI events.
I'm so very grateful for 9 years of survival, but so beat up from 9 years of fighting.
I am in awe that I am still here, and so are many other people who just don't "get" the myeloma struggle.
I am grateful for everyday I wake up, but every day is challenge.
I don't want challenges. I don't want to grow stronger. Challenges don't make me stronger, they beat me up.
I am so tried trying to help others understand the precariousness of my situation.
I am so tried explaining, "defending" "why I look so good", but have a deadly, immune compromising, incurable cancer.
I am perceived as "so strong". I really am not. And don't want to be.
I want to crumble, be taken care of, and have everyone understand how sick I really am.
But yet that's really not me...
I'm strong by nature, my body weak from myeloma.
I live in the moment, what little "living" I do.
I don't want to plan for the future any more.
Who knows what my future is, and how scary that will be.
I am no longer proactive, but reactive.
I want to laugh
I want to be silly
I want to play
I want to run, ride, hike, play, lounge in the sun.
I want to be carefree.
I want to do what I want to do, without the fear of "breaking".
Myeloma has eaten my bones
My bones have holes and lesions and tumors
I am fragile physically
I am fragile mentally
I want to feel good
I don't want to focus on my health and illness, but I can't avoid it.
I am "forced' to focus on my body all the time, and I don't want to. My body is not my friend.
I don't want to think of what medications to take and when, and what it will do to me.
I don't want to have to worry about side effects 24 7, 365 days a year, but I don't have a choice, if I want to continue surviving.
But I am grateful for all the medications keeping me alive.
I am grateful for all the brilliant medical scientists that have discovered all these treatments that are keeping me alive.
I am grateful for all my doctors, nurses, medical staff working with patients like me, to keep us alive.
I am grateful for all those that love and care about me.
I am so fortunate for so much in my life- family, friends, awesome medical care, wonderful insurance
I am grateful to be able to write as I do, and post my thoughts and feelings.
But I am sorry these are the thoughts and feelings I must write about.
I allow myself to ask "Why Me"?
Why Incurable Myeloma?
Why diagnosed so "young", back then?
Why my type of Myeloma, that demands continual treatment, non stop.
Yes, that's right... Continual Chemo, daily, weekly, monthly, forever... if I want to live.
Yet, I know how "good" I have it, in comparison to so so many.
I am sad, angry, frustrated, confused, resentful... what happened to me and husband..
I can't believe how both our lives were stolen from us, and how our bodies betrayed us.
Yes I understand "the big picture" of things... but how can I not "compare" and not be frustrated with what happened to us individually and as a couple...
I am happy, yet so sad...

Forgive me if I sound ungrateful, selfish, self absorbed, and narrow minded.
Betrayal, unwanted challenges, pain, disappointments, a terminal illness does that to one's psyche. Or at least to mine.
I used to be so optimistic.
I still am.
I used to be so strong.
I still am.
I used to be so forward thinking.
I still am.
I used to be a lot of things I no longer am.
That's ok. No it's not ok.
I am so many opposites now.
But I am here, and I will continue to fight to be here for a long time...


So as I was writing this last on the 8's post, the blog views counter went from 208,800 to 208,808, to 208,818, to just now... 208,888! How crazy is that. Crazy 8's! I started posting much earlier today, then things got busy, and now late this evening I am finally posting my thoughts. Unfiltered, unedited. My life never was so self-focused. My life was all about being there for other's journeys. My joy was in "saving the world, one student at a time", one animal at a time, being there for my family. Being all about me, is not me...
Good Bye year 8! 

See you on
12.30.18
Just hours now til
9 is official!






Posted by

6 comments:

  1. AnonymousDecember 29, 2018

    Thanks for sharing, much needed truths that don't have easy answers. Hugs. JC

    ReplyDelete
    Replies
    1. JulieDecember 31, 2018

      Thank you JC for always reading, caring, and supporting me :)) I really deeply appreciate and value your appreciation of my writings, and hold our friendship very dear to my heart and hoofs :)) xoxo

      Delete
  2. CBDecember 30, 2018

    Thank you, Julie, for your transparency and honesty. It may not seem like it, but you are still encouraging everyone who reads your blog. Looking forward to your posts on the 9's.

    ReplyDelete
    Replies
    1. JulieDecember 31, 2018

      Hi CB, thank you so much for your kind comment of appreciation, encouragement and support! Means so much to me to know you enjoy, appreciate my posts, and my honest, from the heart, writings! Thank you CB xoxo

      Delete
  3. MattJanuary 05, 2019

    thanks Julie. I agree with all of this and it's helpful to know we're not alone in feeling how we do.

    ReplyDelete
    Replies
    1. JulieJanuary 08, 2019

      Thank you too Matt for reading, posting, and caring. We're on this crazzzzzy ride together :)) Hoping you are doing well, 2019 is a great year for you and your family! :))

      Delete

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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.