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

Monday, August 31, 2020

Changes Coming, So FRUSTRATED!


Hello Friends, 
Dr appt today, I will report back and update you on my lab results and plan...

(Update... No update, lol... Labs still not back yet. Dr thinks it's due to all the Covid tests backlogging everything in the processing Labs. Will update this update when I have my IGA and M Protein status back... but then again, the waiting is actually kinda nice, so I can live in LaLa land for a few more days... Haha... I know they're bad... see what I mentioned about my Beta2 Microglobulin below...)

I am soooooooooooo angry, sad, pissed, upset, devastated with my situation
Finally tho, I am feeling less pain in the areas of all my tumors and lesions
Finally less pain from (what I think) was caused by Elotuzumab/Emplicity
Finally month long fevers are lessening
All my labs (from my lovely visit to Urgent Care), came back NEGATIVE for any virus, bacteria, pneumonia, etc. Negative, everything Negative. No bugs and germs inside of me. Just low low low CBC levels.
Everything I am experiencing is from frkn Myeloma consuming me, and recent treatments
I am so sick of being sick!
Don't understand why I received this life sentence
I am not strong, I just do what I have to do, to stay alive
And that's not really effective any more...

I am exhausted, beat up, have little life (yes I am grateful for all that I do have), but I am so very very frustrated that Myeloma has stolen my life, makes me feel so sick 24 7, and is seriously trying to kill me. I had so many plans for this time in my life. Yes, sorry, I do whine, WHY ME, WHY ME?

Appears current Dex, Velcade, Revlimid is NOT really working. 
Shocker Julie, what did you expect, going backwards to 2 previous chemos you're Refractory to.
But did this cuz I just can't stand the idea of any more side effects right now! the Elotuz side effects just did me in. July and Aug worst months ever!
Cannot see all my lab results from Friday... that's another thing I'm pissed at. Patients should be able to see all their labs as they come in. But again, I understand they restrict "bad" results, because many people panic. 
Need to get my Dexified emotions under control for appt this afternoon
So much I am feeling out of control of, and I don't like it,,,

As just a hint of how bad I am: 
Beta2 Microglobulin at Dec 30.2009 diagnosis was 4.3 (70% myeloma cancer thru out me)
Current lab result is 5.7 (so I'm probably 90% myeloma cancer now)

OMG, this cannot be my life. Someone stop this awful movie I am in! Jim continues to decline daily. We moved his hospital bed into the family room the other day.
He can still get up with lots of physical help, emotional support, and caregiver muscle, but he's in a wheelchair if not in bed, needs help with everything, and of course everyone turns to me for help, recommendations. I cannot help. I don't want to help. I am so exhausted from me and my issues, (except on Monday 40mg Dex steroid days lol), I look awful, rarely fix myself up anymore, I don't want to be a facilitator, for anyone or anything right now, but I have to, too many lives here I am responsible for. I don't have the energy to help myself, let alone him, and all the responsibilities around here, but I don't have a choice. Seriously incredible all I still do and all I have done these past few months of torture and pain and fevers. (Actually incredible all I have done since my Dec 2009 diagnosis! Stupid me...) Jim's caregivers and our adult kids are so awesome with all the help they give us. They help with Jim's issues and all the household chores. Couldn't do it without them. I feel so bad how much I rely on our kids, now for driving, chores, counseling the counselor, chores and more chores... but they are happy to help around their work schedules. They had an incredible life growing up, and they are happy to help us now, as the roles are reversed. Never thought it would be like this "so soon". I was supposed to need help in my 80's lol, not 50's and 60's .... 

Sorry, I could rant forever with all my pent up emotions. Never been so frustrated, sad and out of control in all my life. I am not the Julie you all once knew...

Ok, need to make a list of my next myeloma medication options to bring to my Dr. I will try to rein in my emotions, so I don't lose it with her...

Thanks for reading and caring and commenting. I will write this blog until I cannot. Have even been thinking what my "last" blog post might say... 

xoxo Julie 

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.... 

Monday, August 10, 2020

Seriously Myeloma, What Other Suprizes Do You Have Planned for Me!


Hi Friends and loyal readers-

I almost wasn't going to post today, as my suffering has been OFF THE CHART for weeks, months. You know when your Nurse or Dr asks you your level of pain from 1-10 scale... well I tell them mine is near 1000!!! No joke. The suffering I have done since I tried Emplicity Elotuzumab, is insane!!! Well not to bash that chemo in any way, as I'm sure it's been a lifesaver for many, but just as I had an insane reaction to Zometa in 2018, whatever Emplicity does chemically, biologically, Wowzzaaa ooowwwzzzaaa, it sure did me in!!!!

So to recap...

Sadly, Cytoxan (400mg of pills weekly) with Velcade shots with Dex steroids (40mg weekly) stopped being effective for me in May 2020. So that's when my Dr wanted to try Elotuzumab Emplicity with Revlimid and Dex. I was not thrilled with changing, but agreed as my IGA was creeping into the mid 2000's. 

Within a few weeks I noticed muscle, nerve aches and pains, but wrote it off to the new med changes in general, thought it would disappear as my body got used to it, and just suffered thru it. I remember shortly after beginning Elotuz, my Left thumb joint area suddenly swelling big, and becoming very very painful. Thought maybe I did something to it with all the ranch chores. Thought it was odd as the pain began to move and migrate up my Left arm, then into my L shoulder area, then into my collarbone, growing a HUGE tumor on my L clavicle and chest area instantly!!!!! When the size and pain was so crazy intense, never subsiding, that's when I told my Dr about it, commencing all the xray, MRI scans, as I've written about in previous posts. 

Well... the rest is history, with all the unrelenting pain, pain medication adventures, etc. Then a week of Radiation, last week of July. Then recently... surprising low grade 24 7 fevers, with more intense pain on my Right side, then more xray scans, and finally today, first Velcade shot of going backwards (my choice, my request) in this new treatment regimen.

So since my last post, I developed a low grade fever. non stop, 24 7 for days and days and days and days, etc. Vacillated from 99 - 100.4  Can't tell you how absolutely AWFUL it's been. Fevers on top of excruciating pain... "Just Kill Me Now" I would sometimes say... but then quickly take my words back, as I'm not quite ready to let Myeloma win. But there were many desperate days and nights, I just didn't think I could take it anymore, and I still can't. Only reason I can post and type right now, is thanks to 40mg, (ten pills) of Dexamethasone Steriods this morning!!! Haven't had a Tylenol since this morning. Just typing hurts. I just can't get over how bone tumors and myeloma lesion pain, along with fevers, is just the most awful thing to live with...

So my new chemo regimen is the ole myeloma first line of treatment of Revlimid, Velcade, Dex. I skipped this regimen in 2010 as good ole Dex steroids and Revlimid alone brought my IGA down in a flash, prior to my SCT, and then I did lowest dose Rev maintenance for 18 months, and then resumed Revlimid again when out of Remission in 2013.

So we'll see how this goes, but honestly, even if my numbers stay the same, or even escalate a bit, or roller coaster, I'm NOT SWITCHING CHEMOS AGAIN ANYTIME SOON. THIS PAIN HAS DONE ME IN!!!

Oh, you probably want to know about the fevers? Yes they came on fast, but low after Radiation, rose from 99ish to 100ish daily. Yes good ole Tylenol brought it down, but I know that's just a band-aid on some sort of bigger issue. What the fever is, I don't know. Never went to Urgent Care about it,... you know why??? Because I didn't want chemo cancelled. If I don't do chemo, I die. Very simple concept for me. Yes I know I should have been checked. Yes I know it could be an underlying issue (infection?) that could be as serious as not doing chemo. Yes I know not treating is not always the smartest thing, but I watch and wait very very carefully, and if it had continued to rise to 101 let's say, I would have consulted. But again why? I won't go to a hospital because, #1 I don't want to die there, #2 my family wouldn't be allowed to visit me, #3 and what really can they do for me there, that can't be done at home??? 

I ask Jim's home health care nurses about the difference between Pallative and Hospice care. I could be eligible for both. Don't want to go there yet. But honestly friends these last few months have really really tested me. I haven't been able to be me, or function at all. Everything, and I mean everything became a super painful choice. Even with medication. Everything was just torture. I got so I couldn't change my T shirts, couldn't shower as I couldn't lift or turn my arms. Sleeping was was never refreshing. The pain woke me up, I couldn't sleep in any other position but semi upright, with many pillows propping me up. Not fun. If I turned by mistake, yikes the searing pain startled me awake, not to mention, fearing fracturing my clavicle collarbone or ribs more. 

I didn't go outside, as nothing was fun anymore, as everything caused me pain. Yes, I tried Norco, Percocet, different muscle relaxers, steroids, different strengths of Tylenol.  And now I have more clarity as to why i have all this PAIN!!.... I found out from my xray scan yesterday... I HAVE MORE FRKN FRACTURES IN MY RIGHT SIDE CLAVICLE COLLARBONE SHOULDER!, in addition to the LEFT SIDE I JUST HAD RADIATED, ALONG WITH MYELOMA LESIONS EVERYWHERE THEY XRAY. YEP, ALL THIS PAIN IS REAL, and that's why I've been in so much PAIN. Get this description of my fracture type! Unreal!

What would cause a Comminuted Fracture? ...A Comminuted fracture is characterized by the breaking of a bone into several small pieces and is the result of high velocity injuries, such as car accidents, falls from a height, or high-energy injuries with tissue loss caused by fragments from explosive devices on the battlefields.

Fractures of several types, Comminuted fracture, lesions, holes, masses, demineralized bones, clivus eaten up, etc etc. It's no wonder I haven't had more pain over the years with myeloma eating me up like termites to wood!!! Just Google some of the specific wording in the reports. Blew me away!

"A comminuted fracture is a break or splinter of the bone into more than two fragments. Since considerable force and energy is required to fragment bone, fractures of this degree occur after high-impact trauma such as in vehicular accidents."


Paravertebral extension usually occurs with aggressive, malignant lesions, but it may also be encountered in benign lesions in the presence of a pathologic fracture. Certain expansile lesions tend to occur in a specific region of the vertebral column. This may be an important clue to the diagnosis. 


Hello Lytic Lesions, you've been Radiated already!!! 

Ok Friends, I'll just leave it here... my myeloma journey just keeps getting more interesting and challenging daily... just can't make this stuff up. You Myeloma can just stop now, and give me my life back. I don't ask for much. Just pain free, with the ability to just move around slowly, and do what I want when I want, without feeling like a zombie all the time, because I hurt so much, and feel feverish and sick all the time. Oh how I took my early years with Myeloma too smugly.. how Myeloma was raging in the background, but the chemos I was on suppressed everything better than it does now.  Well it was eating me up, but for some reason, the pain from all the lesions just wasn't as intense until Zometa in 2018 and now Elotuzumab, May, June 2019... but I will fight until I can't...


May your summer be full of fresh air, warm summer nights, with the moon and stars shinning brightly on you, surrounded by those you love and care about.

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.