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

Saturday, December 14, 2019

December 14, 2009... And So IT Begins...

December 14, 2019

10 years ago today...
Yes 10 years ago December 14, was my very first Hematology Oncology appointment at Kaiser.

After extensive, surprise, extra detailed blood tests, beyond the "normal, regular" labs done for "routine annual physicals", I was referred to Hematology... Hema... what, I questioned??? They must have mixed up my labs with some sickie with a similar ID number...
Oh yes, I was the sickie, but I didn't know it...

I'm pretty sure my GP doctor knew what was up, as he was super Urgent with my Hematology referral, which I delayed from November to December, thinking, ya ya, I'm ok, nothing wrong with Super Woman Julie... just super fatigued, just bleeding out a lot, in several places daily, just breathless, just achy, just so tried I could hardly function, just lots of weird headaches, dizziness, bone aches, so thirsty all the time, always getting sick from all the college cooties... ya ya, nothing wrong with me... I'll just drink more Red juices to bump up my blood strength, and maybe eat a steak or 2 more often. Nothing wrong with me, but what the heck, I'll go to this appointment in Hema-whaaaateeevvvverrrr.....


When I checked in, I even said to the super nice check in girl... "I'm sure I'm in the wrong Dept", and "I'm sure this is a mistake", "I'm sure I don't belong in this Dept"... and "how weird, Oncology is in this Dept too". "Oncology... hmmmm... isn't that Cccccccancer related"... Yep, I'm for sure in the WRONG Dept....

I checked in.
I waited for my appointment.
I met a new lovely doctor.
Who talked to me about my labs, asked me how I was feeling. Took a lot of time asking me about symptoms, which of course I down-played.

She sent me for more labs that day.
Then scheduled me for more appointments with her.
Then sent me for more labs after those labs... "Stat"... what's Stat?
Then called me one day, and I actually answered my cell...
She said certain labs showed I was very sick. I should be hospitalized. I need "blood products"... huh??? Me? No, must be a mistake. Jim is upset I'm not taking all this seriously. I refused hospitalization. I refused blood products. I'll just drink more Red juices. Eat more steak. Wow this is fun, I can eat and drink what I want, and still Lose Weight!!! I'm fine....

More Labs, more phone calls. More symptoms. More ignoring it all. I was just fine. Bleed on!

End of the semester stress. Student Finals. Stress. Lots of desperate students. Stress. Holidays coming. Stress. New Years coming. Lots going on. Stress. I'm not going to the hospital. That's for sick people. I'm not sick. I just have some weird symptoms. Maybe just end of the year stress. I'll just drink more Cranberry Juice and eat more Steak...

And then I was scheduled for a Bone Marrow Biopsy... a What??? I think Scott Googled it and said, "Wow Mom, that's a really painful procedure"... I don't remember if I Googled it... My first BMB was scheduled for December 18, 2009....

Nov 22, 2009
Whoo Hoo 50!!
I didn't feel well here. 
Never did eat my cake :((

Nov 22, 2019
Whoo Hoo 60!!
Wow, Myeloma hasn't won yet
10 years post diagnois!
Still so surreal...
This can't be MY Life.... 

And so the journey began.
But I didn't know what journey.
For the first time, I cried a lot, on Dec 18, 2009, during my first Bone Marrow Biopsy. Shaking, sobbing, crying.. reality hitting type crying...
I knew then I was seriously sick. I just didn't know how sick, and with what...

The story continues 12.19.2019

Thank you for reading, caring and being interested in my life story. 
Stay well. Stay happy. Create the best life you can, with whatever your circumstances are. I'm trying every day. Trying to stay positive and optimistic, under our dark cloud of Myeloma and Alzheimer's...



Posted by

6 comments:

  1. MattDecember 17, 2019

    Congratulations on ten years and here's to many many more! You're awesome Julie and I'm lucky to know you. Funny I also thought I needed to eat more steak when I started feeling weak.

    ReplyDelete
    Replies
    1. JulieDecember 20, 2019

      Thank you Matt! We are Warriors! And members of the "very lucky to still be alive club"! Next time we meet up, we're having STEAK lol lol :)) xoxo

      Delete
  2. CBDecember 18, 2019

    It's hard to believe it's been over 10 years since we stood by the flagpole at COC and gave you all the scarves, head coverings, hats! Congratulations on reaching 10 years with Myeloma. I'm sure your positive, spunky, honest attitude has played a part in you being able to succeed at beating Myeloma for 10 years. Here's to the next 10 years of blogs, comments, transparency and love. You are truly amazing, Julie. Best of holiday moments to you and your family at Christmas and always. Sending love and hugs.

    ReplyDelete
    Replies
    1. JulieDecember 20, 2019

      Awww Carol, you are so sweet to continue to read and support me :)) Wow, what an amazing and fun memory that is. I loved the "scarf party" and was so surprised and overwhelmed with gratitude, with everyone there, and the adorable scarfs!! I still have all of them, and treasure the memory and individual scarves! I wish every one of them was signed, so I would know who gave me which one.

      Thank you Carol, for all your continuing support and encouragement to carry on physically and also continue to write and post.
      How are you, how is your status,... update me here or a private message :)) Let's do lunch in 2020 to celebrate our longevity! Happy Holidays to you and your family sweet friend!! xoxo

      Delete
  3. Obnoxious JimDecember 19, 2019

    Well, Julie, you've become a "star", or so I've read. In your very own dram-edy. Typical California thinking. You are incurable, yet have dragged this on, gleefully, for ten years. Good Work, Counselor. What an education you have given us. My new year's wish for you is that you live a long and meaningful (continued) life but learn about victim-
    hood in the meantime. Obnoxious Jim

    ReplyDelete
    Replies
    1. JulieDecember 20, 2019

      Hi "Obnoxious Jim" lol... do we "know" each other? Regardless, I do appreciate you reading and commenting. How long have you followed my blog? Are you a myeloma or other cancer patient? Not sure how to take your comment, but I appreciate your honesty and candor. I will take it in positive way of posing thought-provoking ideas!
      Yes, I am quite the Victim of Circumstances now!
      Not easy going from a very Independent, Positive, Optimistic, In Control, Take Care of Everyone, Everything person to a Victim of Illness, completely out of my control. Yes, I am a Victim of my own Biology gone wrong, and my husband and I together, Victims of our own Biological illnesses, completely out of our control.

      Please let me know more about you, and if you too are struggling will illness too?

      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.