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Friday, March 17, 2017

Forward March Darza, Velcade, Dex

Hello 3.17.17
Here's my story in pictures.

Some days yes, most days no...
I used to be so "strong",
but I find continual "pain" debilitating...

So many more diagnosed every day!
Just met another local to me...
Where are you coming from Myeloma?

Forward March Tuesdays-
Hello 40mg Dex steroids, bag of Darzalex, bag of Benadryl, Velcade shot

These are great when I get tired of swallowing pills-
Helps calm chemo reactions, and so amazing-
I have ZERO environmental/food allergies
since my July 2010 SCT!

5 hour Darzalex infusions-
So far so good, thank you premeds
and a fantastic chemo lab staff for smooth sailing
Jr strength used to work out ok... 
But these days-
I need to be an "Adult" and up the dose 
with Adult strength pills, 
as there's a new side effect in town...

Several weeks ago, Velcade sent me AWFUL, OVERWHELMING NERVE PAIN! 
Different than the typical numbness and tingling from traditional Neuropathy..
Hit me 2nd Velcade Darza infusion- 
Just unbearable pain like I've never experienced
Feels like a PAINFUL skin fever, sunburn or raw skin.
It's a high fever feeling, but without the actual fever. 
It's the flu feeling without the flu.
Burning sensitive ouchy skin, inside and out.
Clothes feel like needles
My bed is like sleeping on nails
So awful, so debilitating :'(( 
Stealing my precious time away, 
Draining my optimism and strength,
Stealing my days away,
Stealing my life away,
Making me question everything... 

Then fortunately,
Whew! Mondays and Tuesdays Dex to the rescue!
I take 40mg per week,
20mg Mon, 20mg Tues
as premeds for Tuesday infusions 
and finally, some overall relief.
It's amazing to feel a bit like my ol self again.
What a crazy, amazing medication...

And on a happier note:
last Tuesday after infusion-
before my crash- 
Alissa brought us this,
Thank you Dex for a day or two of semi normalcy.

Not often though, as I'm back to counting calories-
I'm not going to let 
Dex steroids make me chubby! 

Me on the one good day

I'll take labs soon (when the nerve pain calms down and I can breathe and function). Truly, dealing with this new side effect is overwhelming me. I'm not used to 24 7 pain. I'm not used to feeling so awful, so "sick", for most days a week, every week, every month... Seriously, imagine feeling sick weekly and knowing in advance you will feel sick weekly... so awful. But I endure, as it will be interesting to see how this new cocktail of Darzalex, Velcade and Dexamethasone is attacking myeloma. Trying to tolerate the nerve pain torture, in hopes the meds are pummeling the cancer cells... if not... what's next?? ...
I don't think I can do this...

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


  1. I hope you know how much it means to me that you share your medical/emotion journey. Many, many thanks. Prayers for great labs!!!!!!!!!!!!

    1. Aww thank you so much for caring and following my crazy journey JC! Means to much to me that you care. I update my update all the time, and today I added more emotion, as this awful nerve pain is just overwhelming me :(( If only we could be trail riding together, without a care in the world. You're in my thoughts all the time Jan, as I'm so happy you can ride as you do! Stay well, breathe deeply the beauty around you, and I ride with you in spirit :) xoxo

  2. Julie, I HATE that you are suffering so much!! I'm thankful that you have this blog as an avenue to vent and share and give inspiration to others. My heart is near to you even though I'm in faraway New Zealand right now. I love you. And I am praying for some relief. Love, Gay

    1. Aww Gay, you are such a loyal supporter and I so appreciate your New Zealand surprise with Kelly!! Wow, just blown away by you two meeting up and surprising me :)) Thank you so much for caring as you do! You are very special to me! Thank you for your love and prayers! xoxo


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
.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?”)


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.