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

Tuesday, October 29, 2019

Spooky Lab Results Coming On Halloween...


So much going on here in CA with the fire and wind. I'm beat up from being on high alert 24 7 with everything. Potential fire, crazy winds, potential power outages... not to mention our daily health and functionality challenges... ugh, I only wish for zero challenges in my life, but I guess that's just not reality nor "real life"...

So grateful for all the brave
First Responders!

Took my full labs this past Sunday, and will meet with my Dr on Thursday for my Myeloma status. I'll update you here on Halloween. Hoping I don't get spooky results :))

My immune system continues to roller coaster and mainly plummet low. Currently my WBC is 2.3, ANC 1.84, RBC 3.64, Platelets 125, HGB, 12.5 Fortunately organ status still good, with Creatinine .71, GFR 93, and all other Liver and Kidney functions in the normal range. Today begin's Monday's chemo crash, so I don't have much "helium", and not looking forward to the continued crash tomorrow.

I have an early online Myeloma conference meeting tomorrow morning, and not sure how well I will feel to participate in it. I miss all my "professional" activities, I miss connecting with people on a deeper level, and I miss participating in intellectually stimulating environments. But I can only do so much now, and I have accepted I just cannot do what I used to do, nor what my mind wants to do. Even after almost 10 years, it's still so surreal how my life has changed on every level. But I am deeply grateful for so much, as frustrated as I am...

Ok friends, I'll be back with my Myeloma status labs...
Thank you for checking in, and caring about my story as you do :))
Did I get a Myeloma Trick
Or a Treat 
for a change??? :))

Here's my Spooky results:


2/14/     3/14/     4/11/     5/9/          6/6/        7/3/        8/4/        9/2/      9/29/     10/27/2019

IGA 70 - 400 mg/dL
1,230      1,260      1,440      690         740         676         654         638         731         648

IGG 700 - 1,600 mg/dL
87           85           98           95           88           150         84           75           85           78

IGM 40 - 230 mg/dL
< 18        < 18        < 18        < 17        < 17        < 17        < 18        < 18        < 18     < 18

Me = 6.0 mg/dL        (normal =  less than 11.0 mg/dL)
No monoclonal protein detected

                                                                                     ME                RANGE
KAPPA LIGHT CHAIN, FREE                            2 mg/L               3 - 19 mg/L
LAMBDA LIGHT CHAIN, FREE, SER/PLAS     2 mg/L               6 - 26 mg/L
KAPPA/LAMBDA, FREE RATIO                         Not Applicable  

                                                                                   ME                  RANGE
TOTAL PROTEIN                                                  6.2 g/dL        6.0 - 8.0   g/dL
ALBUMIN                                                            3.92 g/dL      3.40 - 4.90 g/dL   
ALPHA-1-GLOBULIN, ELECTROPHORESIS   0.26 g/dL      0.17 - 0.50 g/dL
ALPHA-2-GLOBULIN, ELECTROPHORESIS   0.67 g/dL      0.55 - 1.00 g/dL
BETA GLOBULIN, ELECTROPHORESIS          1.27 g/dL      0.65 - 1.10 g/dL
GAMMA GLOBULIN, ELECTROPHORESIS      0.07 g/dL     0.70 - 1.60 g/dL

M-PROTEIN, SERUM                                           0.59 g/dL       0.00 - 0.00 g/dL

Hopefully you can make sense of these crazy Myeloma stats. You'll see my IGA is Not Normal, and M Protein is Not Normal, BUT it's sure better than months, years ago. Go 40mg Dex Steroids, Velcade injections, and 400mg Cytoxan Cyclophosphamide chemo!!

I wound up converting my In-person Dr appointment to a Phone appointment, as I was just too beat up and exhausted, was having my usual GI cleanse crash side effects, and just didn't want to risk getting on the crazy LA freeways with the fires, power outages, etc, still happening! Thankfully my Dr is wonderful that way, and we viewed my MM results on the phone and online together.

Well, that's my status on this Halloween 2019
Hope you had a wonderful October, and cheers to November festivities without Drama, right :))

Saturday, October 19, 2019

Moving Forward Always- Time, You Are Our Friend and Enemy


Hello 10.19.19... how can it be a 9 already...

Time, precious time.
Time never standing still.
Our life on this earth, measured in priceless moments, increments of ticking time...
Time spent, time passing, timing is everything...
Life passing by, always,...
My time, your time, their time, everyone's time.
Timing is Everything...
Precious time, irreversible forward motion time.
Me,... always... living in a suspended wait and see mode.
One Day at a Time is all I can do...
Some say "time heals".
For me, "time steals"...
We can't stop the march of time, and that which it decimates in it's path.
Look back
No, don't look back... too painful.
Look forward
No, don't look "forward"... to "then", "when", or "anything"...
Just Be... in The Now, for now...
Simply Be...

Sometimes I wish I wasn't so deep. Sometimes I wonder what life would be like, just living on the surface, gliding along, not processing life on the deep level that I do. Are those that glide along "superficially", Masters at repressing their deep thoughts?  Are they "Numb Experts", who've mastered the ability to suppress, skillfully not "allowing" themselves to process the depth of their life experiences?
Yes, I suppose this is how most of the world survives... Suppress, Repress, Bury, Deny, Numb Yourself... I haven't known how one just lives on the "surface"... but I am learning... perhaps numb, and superficial is the trick to survival?

I have always been a deep thinker. I came from a family of deep, analytical thinkers. Educated parents that were always thinking, analyzing, processing, posing questions, learning, researching, wondering, discussing...  From the beginning of time, I was always a thinker, processer of everything and everyone. Always wondering who's thinking what, about what, because of why. Why this, why that. How come? Why did this happen, why did that happen. Why are we who we are, and where we are, doing what we are? Always why and how come on so many levels.

My world of "why's" has dramatically changed. I used to analyze everything and everyone Psychologically. Now I analyze everything Medically. Why did all this happen. What really is Happening. What really is happening Inside us? Why. How come. What will happen. When will "it" happen. What will the "it" be? What, what, what; Why, why, why...

For me, so much beauty to see, experience. So much potential everywhere, so much to live for... yet so much sabotage, everywhere, on every level.
Right now, as I write, nature around me is still. Wind is calm, Fires are suppressed. Trees are still and quiet. Fall is coming. The leaves on everything are older, more dried out looking. Thankfully the awful fly season with the horses is passing. The Tortoise is considering Hibernation. He has to a degree hibernated, but then it warms up again, and he comes out. The extremes of temperature has arrived. Warm, too warm during the day. Cool, often too cool at night, when I let the little doggies out to pee last time for the night. The Moon has been bright and big. For whatever reason, the Moon gives me hope, energy, calm, peace and serenity. My "flashlight" from the Heavens, connecting me to "beyond"... The nights always give me a sense all will be ok...

Mornings are beautiful. Hope for a new day. Always hope that things will be calm, no drama. Sadly, I want nothing to have to navigate, micromanage, process, do, be in charge of. No challenges please. I don't want to be "boss-lady", but I am. Responsible for too many lives. But I am, and will be until they cross the bridge to the "next level". Me included. I am responsible for me. I've realized am my own caregiver now.

Recently 2 of our little chickens passed. I don't know why. Earlier in the week, we found 1 dead in the Chicken Yard. I felt so sad I didn't see she was not well. So many not well around here, including me. She passed and I don't know why. Next her sister passed some time last night or this morning. Our morning "animal caregiver" found her gone. I had put her and her remaining sister in the little chicken house inside the the larger chicken yard the other day, when I saw she was not well. Not sure what is wrong with them. They are little grey Bantams, given to me in 2016 by a neighbor, along with the other 3 larger iridescent black/gold hens. All living creatures can feel illness and pain, but only humans can communicate it in words. We are lucky for that, as domesticated animals rely on their humans for help and relief. So many of our animals are "seniors". They have a great life, but I dread the responsibility of their old age illnesses, especially the horses, since they are so big...

One day...
these will be the only horses
I will be able to have here

So all is wonderful, yet awful; beautiful, yet tragic; happy yet sad; good yet bad. Weeky I meet new Myeloma patients. Daily I read, hear of treatment successes and failures. Daily is a struggle for so many. I knew this all my life, but I'm realizing now more than ever, that I had a semblance of control in my life as Counselor. I always felt like a healer, like I could impact change, happiness, health, changes in people's lives. I still do, but I often feel so out of control of everything. But I accept it, I don't fight it. I get it. Remember my quote: "You can't control the things you can't control"... so analyze it, understand it, feel it, deal with it, absorb it, ... Then Let It Go... we're in control of so little... only how we perceive it, process it, and deal with it,...

Wednesday, October 9, 2019

New News is Old News, Let the Roller Coaster Continue


Hello October!
So much to say, but I think I've said it all previously.
So much emotion, so much change, so much to process and digest.
So much sadness, yet so much to be glad for and grateful for.

Life changes each day, yet some things remain the same...

IGA up again ^
Coming close to 2x the High end of normal :((

M Protein going up too
@  .61
Normal = 0.0
Not happy about it, but not terribly worried...

I'm always amazed though that my organ status labs are good. 
Creatinine good, etc. 
WBC and RBC, etc always Abnormal, but my Dr isn't too worried. 
My Abnormal is Normal for me LOL
I am a steady (dangerous) roller coaster, which isn't a "bad thing" ...

This past Monday's Velcade was injection # 52 !
That makes it a year I've been on it. Ahhmaaazing!
Cytoxan (Cyclophosphamide) was added a few weeks later, so it's almost a year I've been on this triplet combo, with the 40mg Dexamethasone!
I'm pretty proud of my body's ability to tolerate this, and that it's still effective after this amount of time. Hoping to remain on this for much longer, as it's not exactly fun, but it's not awful awful, and gives me Quality of Life several days a week.  

My life is taking care of "everything" now. I'm pretty beat up from being in charge of Everything, "micromanaging" Everything and Everyone. Never wanted to be "Boss-Lady"). 
Reflecting back, it's amazing how "smooth" our life was before both our illnesses. Not to mention how much Jim did before and after my diagnosis. Think about your family, relationships, and distribution of daily life chores and activities. Think about who does what, and how much each does. We were such a great team. We never sat down and actually divided life chores up, things just evolved as they did. Now I literally do "everything". Yes I have help from amazing caregivers, my adult kids, and other "helpers", but I do Everything to keep our household and ranch running, us and the animals alive and eating. Everything...  I do Everything!

Look in the hay, feed wagon/wheelbarrow... Yep, that's my Cytoxan pills and a protein shake. Things are so busy, I brought my pills outside with me to take as I did the horse chores. I had been to my Velcade infusion earlier, then errands, then a quick visit with friends, that had been planned before I knew my Monday caregiver Chris wouldn't be available that day. Our daughter Alissa came to "dad-sit" while I was gone, and I brought them food home, so I ran outside to do the chores, while she continued to watch him. I laugh and cry and at my life and what has happened to us. I have so much that is wonderful, yet so much loss... 

Yes, I took my Chemo Pills, while feeding the horses! How funny, and ironic is that. 

Until next time...
Hoping all is good with all of you, and if you're a Myeloma buddy, hoping your treatments are going well.  

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.