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Friday, January 10, 2020

First Post on the 10s for My 10th Year of Myeloma Survival

1.10.2020

Happy New Year!
Happy 10th year of Survival to me :))
Hello to 2020 and Blog Posts on the 10's!


Of course I had so many ideas for what I wanted to write this first post of 2020, the first post on the 10s, of my 10th year of Myeloma survival...

But
But
But

All those ideas are still simmering, and stewing and brewing...
Just don't want to start off 2020 with Negativity, Sadness, Frustration, Disappointments, and being Melancholy... So this post will be all about many the things I am Grateful for, within all the overwhelming unexpected life changes I have had to confront, accept and adjust to...





Yes, I have so much to be Grateful for!
Where do I begin...

I'm grateful for modern bathrooms, specifically MY bathroom
I'm grateful for toilet paper and wipes
I'm grateful my body can process in, and out, all the complex, chemical treatments I currently endure and have endured for over 10 years to survive the 10 years I have! ...

And with that... I'll be back! Because you know why...

====================

Things I Am Grateful for this new 2020 year:

Surviving Myeloma for 10+ years with the type of life I still have

So grateful for-
Medical Science Research creating all the chemo chemicals saving my life
Scientists, Doctors, Nurses, Pharmacists, Pharma staff, All Medical Staff
My incredible Insurance that pays for all my treatments
The convenience of Kaiser treatment centers so close to me
The friendliness of most all of the staff members I encounter in person and on the phone

Goes without saying…
I am beyond beyond beyond grateful for all the Loving, Caring, Supportive, giving, helpful, helping people in my life!

Beyond grateful for my loving Family, amazing Caregivers, sweet Friends, Supporters, You, people that work for us, help us, and those that understand and empathize with our medical disaster

So grateful for all the people that create, make, process, sell, deliver all the products and services we need to stay alive and maintain the life we have

I am so grateful to be living in a country that can provide the all the Health Care available to me and others suffering with health issues

I am grateful for all the modern conveniences that make my life easier to navigate
I am grateful I have a car to get me to treatments
I am grateful for all the mechanics, technicians that make my vehicles safe and for the Auto Club that rescues me when my battery dies

I am so grateful for electricity, water, heat, and all the appliances in my home

I am grateful for all the Veterinarians that take care of my critters
I am grateful for all the people that grow hay for my horses, and for Fox Feed that delivers to my barn
I am grateful for all the companies that make and create products for all the animals we have that we rescued

I'm grateful for all our animals that give us so much love and laughs
I'm grateful I am able to still care for all of them
I am grateful for my old horses getting older with me
I am grateful for all the lives we've saved

I am grateful for all the food producers, farms, companies, businesses that create the unbelievable food choices that Americans have

I am so grateful for technology, connecting all of us together, and connecting everything together, and making my life so much easier as an incurable, immune compromised, never ending cancer patient

I am grateful for TV, as I never watched so much TV in all my life, since being a sickie
I am grateful for books, magazines, and anything I can read, and the authors that write as they do

I am so grateful I am able to grateful
I am so grateful I am able to write about what I am grateful for

I am grateful for all the years Jim and worked and worked and worked, so we are able to stay in our home, despite the complete devastation from both our awful, terrible, incurable illnesses
I am so grateful for the 35 amazing years I had as a college counselor 

I am grateful I still have a functioning brain
I am grateful I still have a functioning body, no matter how awful my daily, weekly side effects are

I am grateful for all my senses. Every single one of them are so vital to quality of life.

I am so very grateful for the beauty of nature, this earth, the sun, the sky, the moon, the stars, the animals, the trees, the flowers, the grass, every single part of nature I am so grateful for

I am grateful for all that keeps this life going that I know nothing of
I am grateful for the power of the Universe that I don’t understand, but hope to one day…

I am grateful I am still independent, and can basically do whatever I want, whenever I want, however I want, ... although I really can’t do much of anything because of daily, weekly side effects, but I am so grateful for the option that I can, if I could




I AM SO VERY GRATEFUL FOR MY LIFE AND FOR STILL BEING ALIVE!

Later today I have CT scan on my Head, as I've had non stop headaches for about a month now. Started with the lousy head cold I had mid December 2019, then continued and continued and continued. So I finally went to Urgent Care last Friday, and the Dr ordered the CT head scan. I know I have pre existing lesions, holes and a "hard" external tumor-lump on my head, so it will be interesting to see what the scan shows... more on that next post on the 10's!

Thank you for reading and caring as you do! Hope all is well with your 2020!





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5 comments:

  1. Obnoxious JimJanuary 17, 2020

    You're inspiring, with your gratitude. Have there been significant "spiritual" changes in your life, in the last ten years? If so, what/how. I'm curious to compare to my own...

    ReplyDelete
    Replies
    1. JulieJanuary 20, 2020

      Hi Jim, interesting question. I would say that I question "things" even more now! How can so many "good people" have such "bad things" happen to them. And I mean world wide, not just my tiny circle.

      Delete
    2. JulieJanuary 20, 2020

      Tell me your situation and thoughts Jim

      Delete
  2. Pat's Posts January 17, 2020

    Ahh just catching up on blogs and as always you nailed it, I tell myself this all the time," buckle up you can be glad that....whatever", as you have promoted here, always something to be thankful for!

    ReplyDelete
    Replies
    1. JulieJanuary 20, 2020

      Hi Pat, yes, amidst all the insanity and unexpected and unwelcomed in our lives, there's always glitter in the snow you shovel, and humor in all the poop I shovel :))
      Thank you for reading and checking in Pat. Love our friendship across the states :)) xoxo

      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.