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

Saturday, November 21, 2015

More Chemo, A Funeral and A Birthday



Here I sit pondering the last moments of my 55th year on this beautiful, yet conflicted earth, as my personal clock rolls over to 56. I am overwhelmed by so many thoughts and so much going on in my life and others'...
I have incurable cancer... yet so fortunate to be treated with miraculous life lengthening chemicals, which are extending my life beyond original expectations.
I have survived this deadly, terminal cancer now for 6 years, due to the expert care I received by my beautiful, intelligent, deeply caring Hematologist/Oncologist Dr Soon-Ki Lee...
Now...
I am here... she is not...

Today I attended her funeral/memorial service and my heart is absolutely broken. Broken that her life was so abruptly cut short, by her own sudden medical complication. How can this be? I just don't understand this complicated life. It makes less and less sense to me, the older I get.
Why am I still here, and she is not?
The absolute irony of her diagnosing and treating my terminal illness, helping to extend my life and I am still here... and she is not. She's younger than me, smarter than me, she saved my life, and gave her life in medical service to others... and now she's gone.
My heart just aches for her family. For her husband and teenage children and all her loved ones, I briefly met today.

She was so loved and so respected!
Tribute bouquets framed the walkway




Goodbye beautiful, caring, intelligent Dr Lee. Such a special lady I care so deeply for, who impacted my life so profoundly, for whom I and my family are eternally grateful. Goodbye Dr Lee, you are my "Angel-Doctor" now...
I cannot wrap my head around this loss...

Forward life goes...

Week 2 of Kyprolis happened
"So far, So good"...
Dr Lee would always say as a question

Yes, Dr Lee
"So far, So good"..
I am managing
I am hanging in there
Your staff is taking great care of me

First needle insertion hit a dead-end...
The fluid began to back up, bubble up
My nurse reroutes the healing poison process
In time, it was
"So far, So good"

Here's how we do chemo-
I take these pictures, I post these pictures
But this whole thing is still too surreal
I feel like I am journaling someone else's life

Sunset
Walking out
Navigating the parking structure
Life moving below at a frenetic pace
We are
Ants in scurrying around this complicated maze

(Thank you Rachael for this awesome picture!)

...

Home
Life moves forward
Happy doggies
Fall leaves
Innocence 
They know, they sense, they feel
But they really don't know
I think that's better... 
Maybe?

 Not so happy birthday
My heart is heavy

And so my year of symbolic 5's is coming to a close.
55 turns into 56
5 turns into 6
5 years since myeloma diagnosis, becomes 6 years in December
5 years ingesting, injecting chemotherapy, becomes 6 years in January 2016
5 years since Stem Cell Transplant will become 6 years July 2016
5 years trying to wrap my brain around cancer and it's impact on my life, becomes 6 years
Posting on the 5's, will become posting on the 6's

But 5 and half years will be that Forever, the time I had with beautiful Dr Lee...

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


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7 comments:

  1. tahoegirl.blogNovember 22, 2015

    So sorry to hear about your hem/onc. So young! can you share what happened .? I'm glad the Krypolis is going well. I just had my labs and we"ll see how the Pom is working next week. I go in Wednesday to see my doctor and get Zometa. Geez the day before thanksgiving with Sacramento traffic is not going to be fun...
    Take care and Have a good Thanksgiving... I hope you can eat some:)

    ReplyDelete
    Replies
    1. JulieNovember 25, 2015

      Hi Christina, I look forward to hearing how Pom works for you. That's a next generation from Rev? I've heard of it, but will read more about it. And I hear cautions with Zometa and bone deterioration issues, look up ONJ related to it. Happy Thanksgiving to you too :)

      Delete
    2. tahoegirl.blogNovember 26, 2015

      I've been on zometa quite a while and do know about ONJ. I use to be on Aredia but wanted the shorter infusion of Zometa. I'm only getting about every 5 months so not too bad.
      On the other front, after seeing my doctor yesterday, we decided Pomalyst is not working for me, so I will start Velcade subq next week. Actually I'm excited to start as I'm pretty sure my rib pain is an active or maybe a new lesion. No rib fracture that the X-ray shows, but he said its probably a lesion acting up.

      Delete
  2. UnknownNovember 22, 2015

    Hi Julie, I'm writing an article for a consumer guide to multiple myeloma, and I would love to interview you. If you're interested, please e-mail me at: debinct69@gmail.com. I would love to do the interview before Thanksgiving. Thank you! Debbie Olsen

    ReplyDelete
    Replies
    1. JulieNovember 25, 2015

      Hi Debbie, Thank you for contacting me about writing the article. I'm glad you found me and we connected yesterday, and I look forward to seeing your completed article :) What a small world it is! Thank you, and Happy Thanksgiving to you and your family!

      Delete
  3. SuzanneNovember 30, 2015

    Julie
    I am so sorry to here about Dr. Lee
    My heartfelt condolences to you and their family. Love, Suzanne

    ReplyDelete
    Replies
    1. JulieDecember 06, 2015

      Thank you Suzanne! I don't think I will ever get over the shock of her passing. Such a beautiful woman, inside and out. Thank you for all your support Suzanne! 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.