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

Thursday, August 17, 2017

This Life...

Hello 8.17.17

Why oh why is life so complicated and challenging. I have so much to be thankful for, yet everyday I struggle with "What The Heck Happened To My Life". I continuously grapple with the "whys" of life. On so many levels... not just myeloma... Yes, my life would be simpler, if I could just "let go and let it go", but that's not my nature. So much has changed for me in so many ways. So much now, is so much more complicated...

Tuesday, August 15, was my monthly myeloma status Dr appointment, with my Darzlex infusion immediately following. Going into this appointment, I really didn't know what direction my recent labs would reveal. I've felt ok, except for the extreme debilitating fatigue from the ups and downs of weekly Dex steroids, and from the power of  21 days of Pomalyst pills pummeling my system, (which lowers my WBCs and immune system), and from the every other week all day Darzalex infusions, and then subsequent delayed side effects from all 3 meds. Some days I just feel so beat up, but I hesitate "complaining" as it "could always be so much worse".

I follow so many myeloma groups and read so many articles, that my head spins with everyone's life altering myeloma journeys. The suffering of myeloma patients, actually all cancer patients, actually all of humanity and animals that are suffering, really affects me. It just pains me for them, so I tell myself, "just shut your trap Julie, things could be so much worse for you!" I know we should "try not compare circumstances", but really, how can we not. Here I am 7.8 years after diagnosis, so grateful, yet so frustrated with my situation. I've been through more rounds of chemo than I can count, and since I have said this so many times before, I think I will count one day... But truly, if you're not ill, not challenged daily, and not struggling with just trying to feel and be ok day to day, one really can't comprehend and know what it's like to have "being sick" and "feeling unwell", one's daily norm. And not just on the illness level... there's just so much suffering on every level in this world. I just don't get it. So many challenges for so many, all the time, unrelenting.

I used to feel so "relieved" after accomplishing challenges. You know, that big exhale sigh of, "whew, wow, that's done, I feel ok now"... happy, accomplished, thoughtful, pensive, fulfilled, but "relieved" that that mountain was climbed. Now, it's more like, "oh boy, ok, what challenge comes my way today, tomorrow, next week"... No time to chill and let my defenses down anymore...

Ok, I'll stop perserverating on my frustrations and mental conflicts Vs my gratefulness. It's all so complicated... Here's my pretty good news from Tuesday:

I'm surprised and thrilled my IgA is still hovering in the upper 400's! Above "normal" of course, but unbelievable how well I continue to do on Darza, Pom, Dex. Yes I am so lucky and thankful for the success of my treatment, and all that is involved in me still being here year 7, inching towards year 8!

 Hello monthly Zarxio (Neupogen) injections.
I'm such a pro now at self injecting. 
The things we get used to...

 Sometimes I just cannot connect with being a cancer patient.
But then I see my pictures, and it becomes more real.
This is me
This is my life
My life as a cancer patient

Just before my my Dr appointment and entering the chemo lab, the Oncology Department had a sweet visitor. Of course I couldn't resist the opportunity to practice selfies with this cutie:

I forget her name, but she's 14 and a shelter rescue.
Her human was a sweet cheerful senior lady volunteer.

7, yes 7... all of 2017

And finally, while I was wallowing in my mini self pity party yesterday and today... I came across this story (linked below) of this amazing HERO!. Shuts me up fast, as under my circumstances, I am really am quite functional, and have "quality of life" most days. No matter how yucky I feel, I am ambulatory, have my wits about me, have great medical coverage, have lots of wonderful loving family and friends, my current triplet cocktail is "still" working and my bones are not cracked and broken from myeloma gobbling me up (yet)...  However, I do often reflect that I do have a "hole in my head" - a lytic lesion on my L side skull, and a solid external tumor on my R side head, and that's a reality check for me...(albeit kinda funny having a "hole in my head" :))

Yes I have so much to be grateful for, no matter how complicated my life is. No matter how frustrated I get because my life took an unwanted, unanticipated fork in the road, on so many different levels, that I never anticipated, I move forward daily, looking always, for the best in the worst.

This man's story is the epitome of bravery, resiliency, success, heroics, perseverance, intelligence, and he's a true role model representing incredible strength and the ability to overcome extreme obstacles. Honor him, and please read his story!

Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can 


  1. Julie,
    You have such a gift for sharing your journey. I am thinking you still kept it a little 'rose colored glasses' update:)
    My doctor mentioned at my last appointment that we needed to start testing blood sugar levels each month--because of the steroids. Since I have a blood glucose tester in house (grand is Type 1), did some testing at home and found my blood sugars were elevated. Switch to a low carb diet, and it really has changed how my highs and lows go with the steroids. Since steroids can lead to Type 2 Diabetes, felt I really need to make the diet change, pleased that it also leveled out the 'rollercoaster' steroids. My week is much more 'level' now and I was even able to get a mile jog in on the lowest energy day of the cycle.
    Get new labs next week, so will see if they confirm or reject my thoughts.
    Sorry for rambling, I still have pretty good CBC numbers, so not dealing with the struggles you have.
    I just saw a video that said 'grit' was the difference between a successful student and an unsuccessful one. I think you deserve the 'grit' award.
    Love ya, JC

    1. Awww loove you cowgirl!! Great comments! Thank you! Yes, I am the "eternal optimist with rose colored, and scented, glasses on :)) So glad you are doing well on your treatment! Just Pom and Dex at this time? That's awesome! And so happy your energy is up too. And yes, the Dex and glucose sugars are worrisome. I really watch too. First I don't want to be a chubby filly and 2nd, like you said, how it can really affect our potential diabetes status. Had a coworker that wound up in the hospital from high sugar levels from steroids! I would love to eat more breads and cookies, but I don't allow myself, or buy it lol! It's how I have the herd on grass hay, and only use alfalfa when it's really cold. Plus our lil mini pony has foundered, so she only gets grass hay!
      I am so happy for you Jan, that Pom and Dex is working for you, and you don't have to do additional treatments! Yippee! And yes, we both have GRIT, in our souls, teeth and boots :)) xoxo

  2. Love your commentary. You do have a gift for writing. enjoy your posts a lot.

    1. Aww Wendy! Thank you so much for commenting. Means so much to me that my blog friends appreciate my musings. I write from the heart, and my spontaneous thoughts for that day. I notice that my thoughts and posts affected by my meds, and where I am regarding my treatment crash. Thank you so much for your sweet comment, and I hope you and your family are doing well. Thank you! xoxo

  3. i like your commentary. Your fluency for writing is amazing. i enjoy your posts a lot.

    1. Hello Meshack, thank you so much for letting me know you enjoy my writings and posts. Wow, all the way from Univ of Nairobi! So very fun for me to know how "international" my blog and "following" is. You made my day, letting me know. Thank you, and please let me know how you found my blog. Is the Univ of Nairobi doing research in Myeloma? Seeing Myeloma patients? So very interesting to be connected across the globe! Thank you!!! :))

  4. Hi Julie! Introducing myself, my name is Bernadette, and I've been keeping track of your blog for a longish time because I look forward to your entries! Came out of lurkdom to thank you for the link to the Cancer Therapy Advisor. Browsing it now, I see it's the site I didn't know I needed! Guess that means I'll have to check out the rest of the links too :-) Thanks again, it looks like an amazing site.

    1. Hi Bernadette! Thank you so much for commenting and letting me know you follow my blog. I love hearing from my "lurkers" :)) How long is "longish"? :)) Tell me about you. Are you a MM patient, or someone you love? And so glad you like my links. I do have many on the R side of my blog, and below, and I too, often forget they're there. I hope all the links still work! Thank you for letting me know posts are meaningful to you Bernadette! :))

    2. Hey Julie! So glad to hear that your regimen is holding down the myeloma. I first found your blog about eight months ago I think, from a "MM" search. I was diagnosed about a year ago, and am recovering from my auto-SCT. There's so many links to check out that I haven't been through them all yet, but if I find any non-workers, I'll let you know ;-) Be well!

    3. Hi Bernadette! Wow, go you! Congrats on your successful treatment. Yes, take it slow and carefully with your recovery. I rushed mine a bit, and tried too hard to recapture my pre MM life. Are you on Maintenance Revlimid or? I was for almost 2 yrs and that worked well for me. When we tried being off all meds, boom, MM came back within 9,10 months in 2013, and I've been back in treatment ever since. Stay well, and thank you for letting me know your story :))

  5. Julie!
    Glad to see your numbers are staying put and where you want them to! Trusting the fatigue will subside and you can enjoy your good days! My mom is on the same treatment protocol as you, she is on her monthly infusions and she is doing well with them! It is a nice to lead a normal life for majority of month!
    We are soaking up every bit of summer, our falls in Alberta are virtually none existent! We usually get snow before Halloween here!
    Enjoy your summer!
    Much love from Canada!

    Una <3

    1. Hi Una! Thanks for being such a loyal follower :)) So happy to hear that Mom is doing well, and I appreciate knowing she is doing well on the monthly Darza protocol. I'll have infusion #18 this coming Tues, and I have thought a lot about the monthly protocol, and do worry that my myeloma will take advantage of it. Have Mom's #s stayed down even on monthly Darza? Is she also on Pom or Rev, etc? Wow, snow before Halloween... sounds amazing, as it's supposed to be 105 here next week :((
      Give mom hugs of support from me, and thank you for your continuing friendship Una :)) xoxo

    2. Hey Julie!
      My mom is also takes Pom and Dex, the Dex only the day before and of the Darza infusion. In regards to her numbers they have stayed stable with the monthly infusions! I trust you will have the same results =)

    3. Hi Una! Wow, that's such wonderful news for Mom! I am so happy for her treatment success and your news gives me hope that the monthly Darza regimen will work for me too. Sept begins my monthly schedule... yikes we'll see what happens. So Mom only takes Dex 1x per month now? I will have to ask my Dr about my new schedule, as I believe she planned for me to still take Dex weekly, regardless of Darza. Thank you for your friendship, and hugs to you and Mom! 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.