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Friday, August 21, 2020

Hate You Myeloma


Hello Friends, 

Been too sick to post and don't have much energy today for the stories I wanted to tell you. My "rescue dose" 2mg of Dex steroids I took before bed last night still gives me a bit of energy and lowers my fever and inflammation and pain, so I can do a mini post. 

Been 3 weeks with non stop fever. Began in the 99's and continued to escalate to a high of 102.9
Yes, finally went to Urgent Care last Friday Aug 14. One good thing that came out of that was a NEGATIVE COVID TEST. All other labs looooooooow as usual, and especially Electrolytes since I just haven't been motivated to eat or drink much, but I do force myself. Medical Team was great, but all my labs scare everyone outside Oncology, and they "panic" and tell me to immediately get to ER!  Call and Ambulance now!. Go to your Local ER now!. Go to a Kaiser ER now!. Get to ER now!. Ummmm, NOOOO, I'm not going to die alone, I'm not going to die in a hospital. Stupid Corona Virus. But I understand the Visitor Policy complicating things for patients like me. And with my Alz husband, I can't just leave. His decline is horrific. Mostly forgotten how to walk, eat, drink, etc...

They did a chest Xray and there are vocabulary words on here that I have never heard of...
You'll have to Google the terminology, unless you're a medical professional or know a lot of human anatomy and physiology...

I can't even describe the daily, nightly suffering. Yes, meds help, but you all know what a fever does to you. Fortunately on Monday chemo days, I still take the 40mg of Dex, so my temp is Normal that day and into Tues... Then comes the crash on Wed. This has been going on since the beginning of this month. I don't have any other symptoms. No cough, no sore throat, no nasal issues. Nothing but an awful fever dragging me down, making me feel awful 24 7. The Clavicle pain has lessened, but still there on the Right side. My Radiologist wants to Radiate that side, but I can't take another frkn thing right now. Yes, I am still doing the chemo triplet of  40mg Dex steroids, Velcade shot and 10mg Revlimid for 21 days. I Cannot Not Do chemo, as not doing anything will allow myeloma to win, which I think is happening anyway, but at least I am putting some poison in the fight still... Will do myeloma status labs in a week or so for my end of the month Dr appt. Not looking forward to those, as I suspect my IGA will be out to the moon. You wonder why I don't pursue this with my Drs,.... if I have a fever, I can't do chemo, and like I said above, No chemo, Myeloma wins....

I really don't have any good news, or positive news. I've been battling this monster officially for 10.9 years now, and probably many years prior. My bones are invaded and being eaten away. I hurt inside and out. I have no life, my life is stolen. I can't do anything I used to do, and I mean basic things like chores around the house, animal chores, showering is a drama, etc. It hurts to do anything, or I am too weak and dizzy to do anything. Can't do things outside or with my animals. Eating is forced, everything is forced. I am sad and angry. This was not supposed to be my life. It is pitiful and tragic to see Jim decline in such an awful way too. This once strong, capable of everything for everyone guy, is basically a blob now. I won't give the ugly details. Just read end stage Alzheimers. 

Thanks for reading,... and I hope your life is waaaaaaaaaaaay better than mine.... 


  1. Gosh this hurts so much to read I am so sorry to hear about your pain and your husbands condition. I want so much for you to win this battle but yet I get your pain and misery please know you help many people with your blog. Please start to take pain meds this will help.

    1. Hi Pattie, thank you so much for all your support and caring. And yes, I do Tylenol regularlly, muscle relaxants, steroids, etc to help with the pain and inflammation. Thankfully, finally, things are calming down for me! July and Aug was just the worst! xoxo

  2. Hugs to you, Julie. Thinking of you every day.

    1. Thank you Sheri, hoping you are ok. Things are finally turning around for me. July and Aug was just the worst. Thank you for caring as you do! xoxo

  3. Hi Julie, I'm sending your love and caring thoughts. You're on my mind and I wish I could help.

    1. Hi Matt, thank you for all your messages of support and caring. Finally things are turning around for me. I read your blog and am fascinated with the treatment you are on. Low Dex with Medrol, and Darza still working for you. I message you about it. Thank you for all your care and support xoxo

  4. Sorry for your suffering. Nonstop fever - alone- is unbearable in my book.

    1. Hi Conda, yes Fevers are just awful, and made me question so much, but thankfully I have turned the corner and I haven't had a fever for a week now! All my labs were Negative for any infection of any kind, so I really think it was a crazy reax to the Radiation. Thank you for caring as you do xoxo

  5. Julie,I am so sorry that you have had to go through so
    MUCH pain!Glad you are the eternal optimist and have helped so many others including me by using it.I will continue to pray and think positive thoughts for you

    1. Thank you for checking in Ron and for all your support. I'm glad my blog is beneficial to so many. July and Aug stole my optimism, but the fevers have subsided thankfully, and I am feeling hopeful again!

  6. Hi Julie, Thinking of you. Oxox

    1. Thank you Bonnie. I am thinking about you and your family a lot and my heart hurts for you. Thank you for your friendship and following my blog 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.