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

Friday, September 28, 2018

Feeling Like a Cancer Patient

Hello 9.28.18 and Bye Bye to September...

Thoughts, Reflections, Scans, Labs, Chemo Changes...

My 8+ years of  posts...
Sometimes I'm funny, sometimes serious, sometimes factual, sometimes raw, sometimes poetic, most of the time unfiltered, direct, honest... I've always been optimistic, positive, forward thinking and hopeful, as I've worked hard to create a life with minimal conflict and drama. Insight, awareness and happiness, my goal for me and those in my life. Having myeloma cancer did not change or create these aspects of me :))

My life...
I've laughed and cried at my myeloma journey, incredulous it happened to me. It's all so surreal. Always. Twilight Zone. I've journaled my treatments and side effect adventures here for over 8 years! I've shared my myeloma story with the you, the world. Yet, all the while, always having a hard time relating, connecting cancer to Me and my life. Seems like I'm telling details and events of someone else's life. Telling a compelling story, and I'm the main "character". No matter my challenges, I struggle with being a sickie. I just hate feeling unwell and unable. Pain steals me from me. I keep thinking everything is temporary, and it will all be better soon, and I will be "back to my normal", in no time. I'm not a fan of this "new normal"... especially the crazy bone pain...

My diagnosis:
I have to say the words INCURABLE CANCER, as that's my reality. Continual, constant treatments. I show up, I participate, I'm treated. For days afterwards, the IV or injection bruise reminds me. Yet I feel like a "visitor" at the chemo lab. I feel like I should be "helping" everyone, be part of the staff, not a patient. Intellectually, medically I know Myeloma is my life, but I just can't fully connect the dots. When I wake up on full powered steroid-boosting days, I am energized, hopeful, positive, humorous. I am partially back to my ol me. Thankfully, Myeloma is suppressed for a day or 2. I'm faked in to feeling ok, thinking I'll be ok, thinking the powerful chemo meds are pummeling the stealth myeloma cells "forever", thinking one day, some treatment will magically make me ok. I'm temporarily distracted, dazzled by the pretend healing, anti inflammatory relief I get from Dex steroids... Then I crash, then the pain, then the extreme fatigue, then the GI side effects and now, this intense unbearable crazy-making night bone pains, rein me in, forcing me to acknowledge my diagnosis and body deterioration realities... forcing me to know I am a "real" cancer patient with REAL side effects, not winning this never-ending battle...
My Reality:
I've often thought that if I "looked" more like the world's stereotype of a cancer patient- no hair, pale, thin, gaunt, physically disabled in some way,... my story would be more believable, to me and others. Because it is human nature to assess and judge, it's difficult for those that don't know me, heck, even for those that do know me...  to understand how "sick" I really am INSIDE. How I struggle to just Be, everyday. I see myself in other's eyes when I tell my tale. There's that look of disbelief, that "surrrrre, um, ya, okaaayyy lady... sure you are..., you look so good..." But these last few months, where PAIN has been my ever increasing daily visitor, I am feeling more and more like a cancer patient, like a sick person, like a disabled person, like someone much older than me, like someone so UNlike me.., like someone very unwell. I am feeling so beat up. I have a sadness I haven't had before.

On being continually "sick" for a LONG time:
I've had Myeloma for most likely over 9 years, as I'm certain I had "smoldering myeloma" a year or more prior to my actual Dec 30, 2009 diagnosis. Now, all the treatments, side effects, internal cellular fights are catching up with me, really wearing on me and my physiology. Maybe my body is increasingly losing the battle, and I feel it more? Maybe everything is finally taking it's toll. Maybe all the damage I didn't think was there, is there, and I feel it more than I did before. Maybe I am not in denial anymore, because PAIN will no longer allow me to deny my serious situation. I'm just feeling beat up. Pain is a powerful reality check.

See, for so many years, GI symptoms and those type of side effects dominated my Myeloma journey and challenges. I felt "sick"a lot, but in a different way then now. The ever present Myeloma fatigue is a constant, and makes me feel like a can't-do-a-thing-sickie. But then weekly Steroids to the rescue!, and I have a snippet of "normalcy", which always caused me to question my terminal cancerous status. I had a semblance of my normalcy for about 36-48 hours.

But now, I can't escape my reality when PAIN consumes me, lights me on fire internally, mostly in the quiet of the night, bringing me to an insanity, a madness I've never known. It's like a searing lava flow, creeping in, consuming my being. Deep inside. Burning, electrifying my left side. Hello bone pain reality... my denial no longer buried. This forces me to accept I have a lot of myeloma bone damage, that I never thought or knew I had. Forces me to accept what I still can't comprehend on my Pet Scan and MRI. When describing Myeloma to well people, I used to flippantly say, "yes, eventually myeloma eats us up from the inside out, destroying our bones", but I didn't "relate" to it.... Now, I've joined the Bone Damage Club, and I can't pretend that I'm ok. I'm not. Pain reminds me daily. I'm fragile now in a way that has completely changed my view of myself. I'm breakable. I'm no longer toughy, carefree, cowgirl Julie.

How I know:
I had my first tell tale PET CT Scan in April of this year. I was shocked to find out about all my Holes, Lytic Lesions, Tumors, Plasmacytomas...... I officially have bone damage. The term "Innumerable" was used repeatedly. Myeloma has officially eaten away at my skeleton. I have all this damage I can't even wrap my head around. WHAT THE HECK IS THE DIFFERENCE BETWEEN ALL these types of bone damage? Myeloma conversations involve using these words interchangeably and I don't get if they're the same or different! Do I have Holes or Tumors!!! Or both? What I do know is, myeloma has eaten away at me from skull thru my legs!

The worst:
Then came my AWFUL HORRIBLE REACTION TO ZOMETA in July, at the same time I had a BROKEN RIB... truly, each day, week, month now, something new happens. This kid who used to be so drama free, is now a Drama Queen...

July was awful, full of pain... but that pain morphed, and never fully went away. It subsided, it changed, and it moved into my lower Left side hindquarters, butt, hip, legs. DEEP INSIDE THE BONES, or the tumors, lesions, or whichever pinched the nerves, muscles.... IT IS SO UNBEARABLE at night. When I sit, when I lay down. Like Right now, when I sit for long periods, writing, reading, researching. But I can't be on the move 24 7! So much of life is sitting, reading, looking, reclining, etc. I get up. I sit down. I move around. I pace. I do things. But at night, I want to sleep! I want to get cozy and relax. My body doesn't let me .... What the heck is going on... The pain is debilitating physically and emotionally. I have never been so humbled, I have never been so close to a breaking point... I am desperate for relief... I try different combination of meds every night the searing, burning, electrifying, all consuming pain invades.

Reality on paper:
So I had a MRI on the specific area I mentioned to my Dr.
Here's the summary of the results:

Here's my PET CT Scan results from April:

So I will be starting Radiation in October!
Me, Radiation? Yep. I'm a Cancer Patient, with excruciating Bone Pain. I'll be starting Radiation. What will Radiation do? What does it do to all the Lesions, Tumors, Holes? How does it help with Pain? Will it untweak the pinched nerves? I have so many questions. I feel more like a cancer patient now... Hello, Radiation! Will I get sick? Will I lose my hair? What does Radiation do for Myeloma... I'm desperate for relief... I'll start reading and researching my new trail ride...

And to top all that off... 
Darzalex, Pomalyst, Dex steroids has finally ceased being effective after over 18 months. Yes, officially "Refractory". But 18 months is a pretty good run, so I'm not super upset or surprised. As I write all the time, I'm not brave any more, and I don't want to begin Clinical Trials yet, so I suggested going backwards, and trying some "standard" treatments I haven't tried before. So this past Monday, I received a LOW DOSE Velcade shot, and will possibly add Cytoxan pills in October. I'm not sure I will do it, as the first and only Cytoxan IV infusion I had June 2010, as part of the prep for my July 2010 stem cell transplant, I wound up SICK from it... wwwwaaaaahhhh waaaah you say. Poor baby. Yes, upper GI sickness is my most feared side effect. So if Cytoxan pills will make me sick, forget it... on to something else. Many of you reading this, must be laughing and shaking your head, but at this time in my life and treatment, having some QUALITY OF LIFE, is what is most important to me. I just won't do treatments that make me feel yucky and gross all the time...

I did have a few Velcade shots back before Pomalyst, but those were "regular" dose, and I had crazy horrible awful skin, nerve pain, and said NO Way to that back then! I recall they wanted me to do Velcade 2x per week!!! I said NO! Who knows if painful skin/nerve pain was the Darzalex or the Velcade, or the higher dose, but I just want to avoid awful side effects, if possible. Yes I know, I'm sounding like a whining kid, and I do know that for chemotherapy to be effective, it does have to be "strong", but I've always preferred to start low, and move up, rather than start high, suffer acute side effects, then reduce the dosage, as seems to be the medical thinking. I have a very sensitive system at first, then after a while, I actually do quite well with "chemicals" lol.

Here's my latest labs:

Yep, everything is up and even my M Protein is back and showing it's lousy self. Probably had been creeping up, but the effects of Darzalex must have hidden it as it moved up from "not detected", not visible, to 1.58 in this one lab result.

Well this post is long and all over the place.. I just wrote my thoughts, unfiltered, sad, frustrated. Sorry, I'm just kinda pissed at my body right now, frustrated with dealing with all this for almost 9 official years, and I just don't do well with pain, but I also don't want to kill off my Kidneys and Liver with mega doses of Pain meds or super strong ones at that. I'm just so sick of being sick all the time. I have been doing "adult strength" Tylenol and Advil lol. My Dr wrote me a RX for a stronger med then the OTCs, Ultram/Tramadol, but I haven't filled it yet.

I'm eating a bowl of ice cream while I writing lol. It's still hot here, and I'm so tired of focusing on doing all the right things, all the time, and it doesn't seem to make a difference. Well maybe it does, as I'm still alive.

I'll end here, but to summarize, Darzlex, Pomalyst Dex bit the dust, and it's on to Velcade shots, Cytoxan pills (maybe) and still 40mg Dex steroids. And Radiation! I'll be starting Radiation in October. Wow! Radiation. Any suggestions for treatments allowing for "quality of life", are welcomed. And at this time, NO, I do not want to do another stem cell transplant or the CAR T-cell. Yes I want to live. Yes I know I have to treat myeloma seriously. Yes I know I have an aggressive, high risk form of myeloma, but NO, I don't want to suffer any more than I have to, and live what ever time I have left.... in constant side-effect PAIN, in the bathroom or on the couch... that time will come, when I have no other options...

Thank you for reading my life. Your comments inspire me to keep writing. You give me much needed perspective, options, ideas. Thank you!


  1. Julie, I just want to thank you so much for writing and sharing your journey with multiple myeloma. My husband not only has extramedullary multiple myeloma but also has a rare demyelinating polyneuropathy disease that effects every nerve throughout his body. He completely understands your pain. You are an inspiration to both of us. Prayers and Love to you from Upstate New York.

    1. Hi Bonnie, thank you, and your husband for following my blog, and checking in. I really appreciate your commenting and sharing your husband's diagnoses. Like I mention often in my rants, I know there are so many many MM patients out there that suffer so much more than I do, and I deeply appreciate you commenting and letting me know Mr Pankhurst's Dx's in addition to Myeloma.
      Certainly humbling to me! I am so very sorry for all his pain, and what must be the additional treatments and side effects he experiences :((
      I just can't imagine what he must go thru. When I am at my wits-end, I always think of the others who suffer with all kinds of Dx's and all the additional complications way beyond me.
      I am strong mentally, but not so much physically and I am not a fan of pain or disability or all these crazy medical conditions controlling us, as our bodies betray us daily :((
      I had to look up his additional complications, and I am so very sorry for all that he must endure. Would you want to share what treatments, and meds he's on.
      You can also email me at if you prefer.
      Thank you again for sharing Bonnie, and for you kind words of support xoxo Julie

  2. Julie,
    You are an inspiration to me and have been for the last 30 years. I’m so sorry you are going through so much pain and hardship. It just doesn’t seem fair:(
    Just know I’m always here for you.
    Love you friend
    Suzanne Weltig

  3. Awww, Suzanne, thank you so much for checking in and letting me know you follow my Blog. It has been the best way to share my story and details with everyone, and I appreciate the time you took to read my thoughts and rants :))
    You too are quite the Inspiration with all that you have gone thru, and I hope to one day go to the beach with you, to write our Survival in the sand, as you do on your Anniversaries :))
    Thank you so much for all your love and support and our 30 years of amazing friendship xoxo Julie xoxo :))

  4. Hi Julie, Just getting caught up. Thanks for sharing. I'm sorry to hear you're having to change things up, that's always a scary thing. But I'm confident you'll do great on the new/old drugs. I'm sending you positive thoughts and energies.take care and hang in there

    1. Thank you Matt! Yep, Darza Pom Dex finally expired for me. Was a pretty good ride while it lasted. How long has Darza worked for you? I'll check your blog posts also. Altho we know Myeloma is incurable, it's always disappointing when we become refractory to our current regimen, and have to change it up. I decided to go backwards and try Velcade, since I skipped it before, and went directly to Krypolis, fearing all the comments about Neuropathy and Velcade. Did you do Velcade? Anyway, hoping you get a long ride from Darza!!! Thanks for checking in Matt and all your support and positive vibes.


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.