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Monday, March 22, 2021

So Sad, So Sick, So Sabotaged by Myeloma

 Hello Friends and Loyal Followers-

Have so much to say, but zero energy to say it... here's the plan for this week:

Dr appt Tuesday
High Dose Steroids before (which I take early in the morning for full affect for chemo and overall body pain relief. They are my weekly friend, but yucky-crash enemy more than ever now. 

Before that, Labs for Blood Typing for Platelets and Blood- Nurse called and said I needed blood typing labs and needed to get to the Lab (further away Lab for me) asap. I laughed and said, "are you kidding me. I'm not a normal person and can't just jump in the car and go there. My adult kids are at work, I can't drive and besides I can barely walk and function. Nope, now way can I do labs there today, blah blah blah... but back in the day, ha ha, not a problem to do whatever I wanted whenever I wanted. But of course, back in the day I didn't need transfusions. 

Dr appt to dicuss Blenrep start day, but may not be able to start this week because of the Transfusions... Good bye Darzalez, Pomalyst, Velcade, Dex Steroid combo. Velcade, Dex may be the only continuing partner with Blenrep... 

Wednesday, Blood, Platelets, whatever can help build my system. Maybe continue to do weekly Velcade shot if I don't begin Blenrep immediately. We've discontinued the Darzalex and Pomalyst too. Just don't want too many things colliding, confusing multiple side effects. As always, I want to know what is causing what. What will Blenrep do to me beyond the Eye issues? How yucky will I feel. Will it be my miracle medication? OMG I HATE YOU SO MUCH MYELOMA. Why why why why me. I don't understand what I did to cause to this celluar volcano inside of me. Some days I am really "done". I don't fear Death. I just have so much more living to do... I'm just so sad. I could cry all the time (which I never "needed" to do before). So many things around here to make me emotional and cry. The little doggies look into my eyes when I cry, and the depth of their empathetic gaze is so deep. Animals are so perceptive. So sad, so incredibly sad what happened to my life at 50, and worse at 60...

Have had several weeks of side effect awfulness. Finally took one 4mg Dex Steroid earlier today, as I cannot stand myself, and what myeloma has done to me. Can't stand feeling so incredibly awful, so sick, so weak, all the time. Big Fever middle of the night last week 102, 103?, and I think a week before. Then fortunately, lower the next day 99-98. Weak beyond weak. I so fear falling. Cannot eat or drink much at all, if I do, you know where I wind up for hours lol. But there are days I barely have anything coming out of me, as I barely have anything going in. Not good, I know...

Feel so sorry for all the critters here. Yes my wonderful, loving adult kids come daily to care for me and them. They want to bring me food, but I can't eat, just can't get beyond the nausea and full feeling from the lovely Alien Abdominal Mass. Have you ever watched all the cooking and food shows? I laugh at the "Carnival Eats, BBQ, etc shows, and think what the "normal" person can eat and digest. So Jealous. But wouldn't dare...

Any of you become Extramedullary? Never heard of it before. What caused it. Was it the horrible summer of Elotuzumab for me? Some crazy reaction that actually stimulted tumor growth because I"m IGA myeloma? I was so "functional" prior to that. Sick, yucky, side effects, but Functional. Sorry I ever tried Elotuzumab. But who knew... Who know's what will result from putting all these powerful chemicals into our bodies, trusting they will kill Myeloma, but not us lol...

And this!!!!! LOL Unbelievable!!! Ever seen Beta2Microglobulin this high? My phone is overfilled with pictures and screenshot, so I won't be posting all the other Myeloma- Lab- You- Won't- Believe- This- 


Ok, bye for now. Thank you for checking in. 


  1. I am so sorry Julie for your suffering. It certainly is not fair. Dennis' extremedullary disease (plasmacytoma) came from a fractured vertebra. Light chain escape dr called it. The little monster cells escaped through the fracture. I wish i could give you a hug Julie. Please know i am thinking of you and sending healing hugs. Bonnie oxox

  2. I m hoping that the Blenrep will do something good for you. You are in my prayers.



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.