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Monday, January 11, 2021

The Body Sabotage Continues Non Stop, Go Away Myeloma


Hello Friends and Loyal Followers. 

Here we go with posting on the 1's as I enter my 11th yes, Eleventh Year of Myeloma survival.

I have to make this short, as I have reacurring bloody nose episodes and don't want to bleed out on my computer. I had written some deep thoughts yesterday to post, but never finished it and don't have energy to finish it now. Maybe I will later... 

I'll add screenshots of my results as they come in, so be sure to check back :)) as well as updating you on my new 2021 treatment plans. 

So quickly, here are the Lab results that have come in for my appt with the Myeloma Specialist on Tuesday (tomorrow). I was surprised how high (as in "bad" high) they were. Haven't had results as high as this, on these particular tests:


WOW... 10.8 for Beta2?
Wonder if that's a world record yet?

Total Protein

And 12 for Total Protein, 
Never had anything like that before 
and actually never paid much attention to this value
as it was always in the "normal" range. 


OMG up up and away we go :((
Never been this High before...

M Protein below

It's never been this High :((

I'm so sad Myeloma is so intent on doing me in. I have so much life I want to live... we'll see how the new combo of Ninlaro, Darzalez, Dex does. Last week was my first with these 3.  Have had Darza previously with great success, and Ninlaro is in the Velcade family, and I did great with Velcade for quite some time too... and Dex steroids. Well I'm ditching the High Dose 40mg for 4 days on, as it's bloated me up along with my Extramedullary Abdominal tumor mass Alien. I look preggo, my belly is so bloated with my Alien. Helllllo Nooooo to that continuing! I barely eat now, as I can't stand the bloated, full feeling. The idea of food still appeals to me, and I do eat tiny bits at a time, but all the fun things I prepared before, ugh, just can't eat now without feeling like a preggo BroodMare. 

I have frequent bloody nose episodes. Like blood pouring out like a faucet. Today I thought I had plugged it up, took the tissue out of my R side nose, and SPLAT, lovely red myeloma blood all over the floor. This is due to the lack of Platelets now. I didn't post those results, but my CBC's are not happy, to say the least... Never had such bad labs :((

Time to build up those lovely Platelets and supportive blood.
Myeloma, you're just too smart and know just how to sabotage me.

So when my IGA and M Protein status comes in, I will screenshot that for you.
I expect some crazy outrageous number, that I will probably then submit to Guiness Book of World Records. Yep, and there they are above, super High :((

And please don't be offended,...... but I spoke at length with the Medical Social Worker the other day, and want to get the process going for ELO (End of Life Options). I am in no rush, seriously, NO Rush, just want to have OPTIONS, in case I don't have any more options, in case my situation becomes so dire, so unbarable I cannot breathe, move, function, or I can't care of my personal needs, I develop more and new painful fractures all over, or I'm paralyzed from fracture/bone breaks, the tumors have invaded everywhere, I can't eat and enjoy, the pain is overwhelming, and there is absolutely No Hope, Zero Hope, for anything helping me or healing me, and all I can do is lay in a Hospital Bed and "wait" for the end to come... Remember, I went thru all of the drawn out, lingering End of Life experiences with my dear husband Jim, when Alzheimer's completely stole his life. As an Alz, Dementia patient you don't have any options (legally and psychologically). The end is just suffer, suffer, suffer... and for the family to wait, wait, wait, watch, watch, watch, along with Hospice assistance... I would of course make this decision with my Adult children, not all by myself...

If you have NetFlix, there was an episode in "Grace and Frankie", about the ladies's friend who chose this option. She threw a great party, then privately passed. How ironic that I am watching this series, and this episode is there. She had "no more options", so this was her choice of how she wanted to exit the earth. And I emphasize, I would only choose this route, IF THERE WERE NO MORE OPTIONS, AND I'M ONLY SUFFERING BEYOND SUFFERING... I would NOT do this option if my kids did not agree.

And yes, I have decided to do Clinical Trials after I have gone thru all the FDA approved Myeloma treatments. I will do the Phase that has the most options and the researchers know the side effects. Because honestly, as I have mentioned a zillion times, I will not spend my last weeks, days with my head in the toilet... 

I will continue this post as more results or chemo changes come in. So please continue to check back. 

UPDATE- 1.13.21

Chemo regimen change - 
Bye bye Ninlaro pills 
Hello Velcade shots again
Hello again to IV Darzalex
Hello again to Pomalyst pills
And of course Dex Steroid pills

Will do 5 days of Zarxio-Neupogen to raise low WBC
Will do a bag of Platelets, and 
2 bags of Blood

Huge shout out to all the Blood Donors out their saving all our lifes!! Thank you for being so UNselfish 

Thank you for reading and caring as you do. 
You help make my life feel valuable :)) 


  1. You have always been and continue to be valuable to me Julie. Your spirit uplifted my husband on his difficult days for that I will always be grateful. Sending hugs,comfort and peace to you as your journey continues...Bonnie ox

    1. Aww Bonnie, what a sweet comment! Thank you so much for letting me know my blog made such a difference in your and your husband's life. That really does mean so much to me! Sometimes I worry that I am too "raw" and unflitered here, but I write from heart and just let it spill out. I don't post like this on Facebook for sure! So how are you doing just as "you"? It's quite an adjustment without our hubby's right?! I talk to Jim through out the day, have his ashes still sitting in his fave chair at the kitchen table. I also have a counter full of pictures of him, and me, and us, and talk to those too. Cannot believe all the medical drama that hit me from June on. Hoping to get this awful downward trend in control, but who knows where 2021 will lead, right...
      Hoping you and your family are doing ok, and I should have put this in an email... xoxo Julie

  2. Hi Julie Cowgirl! You are always in my thoughts. I know you will do what’s right for you and I know one day we will ride again together on the most beautiful horses we’ve ever seen. You are such an extraordinary person and touch more lives than anyone I have ever known. I feel so lucky to have worked, laughed and enjoyed the warmth and hospitality you and Jim gave us. Lots of thoughts and prayers going your way. Terri.

    1. Thank you so very much Cowgirl Terri for this beautiful comment. Looooove the idea of riding together, and I will never give up on this goal! And imagine, if we could pick any horse we wanted... I would go with a Golden Palomino, which would you choose? I am really hoping that I can get over this awful stage, and we can get together asap. Say Hi to Dan, and I will call you when I have more energy. Thank you so much for you beautiful, appreciative words Terri, Loooove you xoxo Julie

  3. HI Julie,I am glad you are exploring options like clinical
    trials!Hope you have a better week and that good news comes soon!

  4. Julie, I’ve been texting you. I’m worried. Pls give my # to Alyssa. <3


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.