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Thursday, December 14, 2017

Today, 8 Years Ago, December 14... When "It' All began...

Hello 12.14.17

Hello Myeloma... I'm still here!
Today marks 8 Years from my very first Hematology Oncology appointment :)) What a Medical Miracle I am!


Yes, my "Official" Myeloma journey began 12.14.2009. Oh my, was I clueless and in DENIAL. I truly had no idea the seriousness of my medical status, and just thought it was a blip in my life.

Very Revealing Blood Tests Began in October, November 2009, and I was quickly referred to Hematology Oncology for further testing.


I was so very fortunate to be assigned to the amazing, kind, insightful, patient, intelligent, ever so caring Dr Lee. I'm sure she "knew" what was going on with me physiologically, but went to great lengths to test, retest and test more, before my official myeloma diagnosis at the end of December 2009. She would quickly call after all my blood tests and update me about my very concerning status. She wanted to hospitalize me, and give me blood, platelets, etc, but I just couldn't wrap my head around the fact that I could need that sort of treatment. Me, when she would call- "Oh wow, really, no, must be a mistake... can I just eat things with more Iron, and Hydrate more? Can we wait a few days, and see if things improve on their own?" ahahha, I was so silly and in full denial about the seriousness of my situation...

 Dr Soon-Ki Lee
Thank you for saving my life

I was so Anemic, extremely Fatigued, bleeding out "everywhere", dizzy, blurry, mentally foggy, headaches, body aches, losing weight, sickly for the last year or so, and just trying to go forward with December holidays... thinking I would "just be ok"...

 Here I was sometime in October 2009

Yes, when I arrived for my initial Hematology Oncology appointment December 14, 2009, I really believed I was in the wrong department, and everything would be sorted out quickly, and I'd go back to being Mom Julie, Family Girl Julie, Counselor Julie, Cowgirl Julie, Let's Just Have Fun Julie... But that's not at all what happened. 

Here's a look back on my previous 12.14.09 blog post reflections: 








I'm really really glad I started this Blog in 2010, and have honestly and candidly written my thoughts and recorded my feelings for over 7 years now. To me, my Blog is my Living Journal, Living Diary of my life... my life forever changed by my 2009 Myeloma diagnosis. I thank each and every one of you that have visited my Blog, made comments, let me know you read my musings, and that you enjoy my posts. I know some of you well, and for many years, others I don't "actually "know", but we feel we do, and others who I have no idea who you are, and where you are from, but I hope that what I have written, and continue to write, is meaningful and helpful for you. 

I'm still incredulous, and still feel I am writing someone else's story. But my lab results tell differently. My IV chemo infusions are my reality checks, and the 21 days per month of chemo pills I swallow, are daily reminders of how sick I really am, and how "tentative" my visit here on earth really is.

But today, 12.14.17, I'm ok. My vicious November illness is almost a distant memory, and I took 20mg of Dexamethasone steroids today, and I had an unusually "fun and energizing" day, with multiple laughs and several random tiny adventures. I made Breakfast for Dinner- Lox, Eggs, mini sausages, fresh berries, and we watched some funny movies. I treated myself to a bowl of Mint ice cream, paired with Peanut Butter Cup ice cream, and ended the evening with Chamomile tea and commenced the beginning of my 12th, or 13th cycle of Pomalyst. Yes, myeloma, you often win, but you Haven't won. I have.




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

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4 comments:

  1. AnonymousDecember 15, 2017

    Beautiful Post Julie!
    Wishing you health and happiness as we approach the new year! Happy Holidays!
    Hugs from Canada!
    Una

    ReplyDelete
    Replies
    1. JulieDecember 20, 2017

      Hi Una :)) Thanks for always checking in and letting me know you're "out there" :)) Happy Holidays to you and your family, and tell Mom "hello" for me. Thank you Una! xoxo

      Delete
  2. UnknownDecember 17, 2017

    Julie,Congratulations on the 8 years. You have in every sense of word been a walking miracle.You are really helping people with your blog and your optimistic attitude.Have a Merry Christmas with
    your family
    Ron

    ReplyDelete
    Replies
    1. JulieDecember 20, 2017

      Hi Ron! Good to hear from you. Thanks for checking in, and for your appreciation of my journey. Hope all is good with you and your family. Happy Holidays!

      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.