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

Thursday, May 26, 2016

Up and Down the Myeloma Roller Coaster of Life!

**UPDATED** :)) Feeling a bit better now.

May 26 turned out to be a yucky blah crash side effect day, with icky GI unrest, and I'm in a no helium fog :(( Maybe I should abandon my symbolic posting on the 6's and post randomly when I have fire and pep? Have you noticed, when I'm on my Dex power surges, my blog posts have so much to say. Darn, I should have written on Mon or Tues. Oh well, that's my life of extremities!

Here we go... wheeeee... this fun picture, of a recent (very unusual) break week adventure, tells the story of my roller coaster myeloma life. I'm trying, really trying, to live my life, as fully as I can, while Myeloma works overtime ambushing me.

My life:
 A crazy unpredictable Roller Coaster
Just let go, go with the flow- I tell myself
Jerked this way, jerked that way,
Up Down, Up Down, Trending Up
We're really not in control, so just enjoy the ride!

 Yes I did this! 2x!

Buckle up, hang on. Hang on for dear life in so many ways. 
Here's my status for May: 
Booo, my numbers are Up again. AGAIN! Up, Up, up the myeloma roller coaster I go... Seriously life, what's "up" with this! I honestly didn't expect this status. Get me off this crazy Myeloma roller coaster! I'll take the real ride any day!

So the other day at one of my Oncology Hematology appointments, I laughed as someone used the term "Trending" (in a serious context) with regard to my IgA and M Protein TRENDING UPWARDS. I'm Trending! I'm Trending! See there is a "funny side" to all of this craziness. You know, like "Trending" on social media?! hahaa! I'm Trending! Ok, maybe not so funny, but it gave me a good giggle. I'm Trending, but not in a good way...

Here's my Trending Upwards chart of my IgA and M Protein that I've been reposting each month for perspective on my situation and statistics:

My type of Myeloma "trends" via my IgA and M Protein levels:  
(I'm IgA myeloma) Immunoglobulins explanation 

Normal IgA = 70 - 400, Normal IgG = 700 - 1600, Normal IgM = 40 - 230

Date                      IgA        IgG         IgM
10/18/15              1890       240         < 18
11/18/15              1440       233         < 18
12/2/15                862         230         < 18
12/30/15              482         262         < 18
1/18/16                426         228         < 18
1/27/16                432         221         < 18
2/10/16                551         227         < 18
2/28/16                635         226         < 18
3/22/16                533         242         < 17
4/17/16                717         251         < 17
5/15/16                808!!       232         < 17

Normal = 0 

July = 1.26
Aug = 1.01
Sept= 1.37
Oct = 1.58
Nov =  1.12
Dec and Jan = Not Detectable! thank you Kyprolis + Dex
Feb =  0.62 Ugh! Quite a jump in a short period of time (Off Dex)
March = Abnormal, but no M-Protein number mentioned (On Dex)
April =  Abnormal,  but M Protein value not detectable (On Dex)
May = .75 !Booo! That's a BIG upward Trend in just one month!

So process this with me...
I had remarkably successful results initially with Kyprolis + Dex, beginning Nov 2015. We then tried tapering off the Dex, seeing how I would do without it, as my Oncologist was concerned with my long term use of Dex- (2010 @ 40mg, 4 days on, 4 day off, for 5 months) and then beginning again late 2013 @ 20mg weekly, after coming out of Remission, Summer 2013.
Well going off Dex was a short lived experiment (mid Jan-mid Feb), as we've now learned that my type of myeloma runs scared from Dex steroids. I have good results when on Dex, so it looks like I always have to pair my MM meds with Dex. Ugh! Such a mixed blessing, as I love the Up Surge, but Hate the Crash! One thing I do, that I should probably not, is Not taking Dex on my Kyprolis break week. I am just so desperate for "normalcy", that I take a break from All meds during my break week. Ssshhhh, don't tell on me...

So here I've been, doing a relatively "new to me" treatment since Nov 2015, and it's only May 2016, and now my myeloma stats are Trending upwards rather quickly. Honestly, I'm surprised, shocked and really sad. I was very encouraged that this new treatment regimen would be my new "elixir" and keep myeloma suppressed for sometime, like Revlimid did. Yikes, what does this mean? Is my situation getting worse, faster now? Is this just an unusual anomaly? Is this just a temporary upward Trend? "Trending" on social media is cool, right? But Trending upwards with life altering "bad" cancer stats is not so cool.

Granted my IgA and M Protein is no where near where it was at diagnosis, Dec 2009, the upward current trend is quite concerning. My local Oncol/Hema and my SCT specialist are both encouraging me to UP the Kyprolis dose and/or add another medication. Guess my response to that???
Nooooooooooo, not yet!!! I have a life I want to live! My side effects are already so disabling. I am already so limited by myeloma and treatment side effects. Noooo, this can't be. I have plans for June! 2 weddings. Nooo way, I can't increase my dose! Not now. Ironically, I was even planning to SKIP a few treatment weeks, just so I could ensure I would be ok for the wedding weekends. Dang you Myeloma, you really mess up my life, my fun and my plans. I hardly do ANYTHING as it is, and I now have to process this curve in the unwanted myeloma road.

Up Down, Up Down, Up Down goes Myeloma- It is a LifeStyle
Sick, Well, Sick, Well, Sick- goes the side effects..
Good Days, Bad Days, Good Days, Bad Days- ridiculous way to live..

These are the things I ponder all the time: 
Higher Dose medications vs Quality of Life
Little trips, fun things, stay the course. Or up treatment options and up side effects?
Preserve my organs for the long term with lower dose meds vs numbers increasing vs a higher dose increase? What to do? What to do? I want to live my life, not just treat cancer...

If I had been a "sickie" all my life prior to Dx, this absurd current lifestyle may have not been so shocking to me, but I am just so frustrated with illness controlling my life. I was always so active and well. Truly, myeloma limits my life so much. I marvel at all the other people I know and follow that appear to have "relatively normal" lives. How do they do it? How can they travel? Do marathons, work? Be around the public, and sweet grandkids and kids who are like "Petri-dishes" of germs! Must be the difference between IgA and the other types of myeloma?! My immune system is particularly hard hit, vs others who are horribly impacted in their bones... Both are awful! But forward I go, one day at a time, processing processing all of this, all the time...

Here's a wonderful video that summarizes my life in so many ways. There are so many of us that "appear ok on the outside", but are really quite sick on the inside with chronic incurable illnesses: Pretty on the Outside, sick on the Inside

So on the days I manage to feel ok, on those few days I can leave my house, whether on my chemo break week, or a day here, a day there, an hour here, an hour there... I WILL ENJOY MY LIFE!  Here's proof of that: 

 Something the girls said was so funny!
I'm having theee BEST laugh here!

Best Time Ever!

Love you Kristin!

Love you Jesse!

Love you Wendy!

For just a few hours, I almost felt "normal"
Love them!
Off we go
3 hilarious pals
and 2 disabled sickies
We had a blast!


Some interesting links for you:

Single infusion Kyprolis at Higher dose 

Are Stem Cell Transplants Still a Preferred Treatment For Myeloma? A Study Says...

Ha! Not only me writing about the Myeloma Roller Coaster:

Thanks for checking in and caring! 
I really appreciate your comments
and knowing I am still making a difference in the world. 

Until next time-
 Living the Myeloma Roller Coaster of Life...while "Trending"! :)) 

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


Monday, May 16, 2016

May Milestones and Updates Coming!

Hello May!

*Update to the Updated Update*
Been such a crazy "chemo break week"! Too many (wonderful) things came up, and I had a crazy whirlwind week. So exhausted! But that "good exhausted" from Living Life. One more event to go today (Sunday May 22), then it's back to chemo, dex and side effects ruling my life...
But until my next detailed blog on May 26, here's the headlines: 

*Unwanted Update*
Friday May 20 SCT-oncology appointment update:
I found out news I did not expect.. at all. I still live in a "I really don't have cancer that bad dream world" -
IgA up over 800 (that's 2x the HIGH end of normal) 
M Protein spiked from "not detected" to .75 (zero is normal)
Wow, how can this be Kyprolis? Thought you were my best friend? Boooo :(( As always, I expect good news, good results and I am truly shocked when I hear myeloma continues to win.

Last week:
I didn't make it to this year's SCT Reunion,
but my Tee and Badge made it back to me!

Seriously? Really!
Dead battery surprise
when I left my most recent Kyprolis appt!
O myeloma! What next???

My Myeloma girlfriend Cynthia
attending the Survivor's lunch

My friend Suzanne, breast cancer survivor
at the Survivor's lunch

*Updates and More Updates to the Update*

Finally went to my office this past Tuesday! Wow, what an emotional experience that was seeing all my wonderful college colleagues! My office calendar was still on October 2015. Made some decisions...

First in 20+ years, spontaneous (free tickets) trip to Disneyland, and most likely last trip. But what an enlightening experience that was on so many levels. Details and pics to come... I surprised everyone, and went on a roller-coaster! And again! Ha! take that myeloma! 
Myeloma Crowd blogger Lizzy writes our roller-coaster life here!

Attended Relay for Life... sweet pics to come.

I know most don't want to hear this, or accept this, but Myeloma and being a sickie owns me. Trying to do all these activities this week, was just overwhelming for me, but the timing was what it was, and I just went with it. Having a "chronic illness" truly is life altering. Imagine feeling like you have the flu 4-5 days per week, and only 2-3 ok days per week. Imagine always being surprised when you do actually feel good, not the reverse. Imagine always having to explain your "special needs"... It's a crazy way to live. Yes I pushed myself beyond my limits and I'm paying for it now... I am so exhausted. But I HAVE TO LIVE while I can!

Haven't really had a chance to process my BAD news yet...

Until next blog...thank you for reading and caring!

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

Tuesday, April 26, 2016

Life in MyelomaVille... Decisions Decisions


Hellooooo Everyone :)
It's a Chemo Dex Day, so here I am up late posting and should be "forcing" myself to sleep. Off to bed I go, see you in the morning!

Oh, Dexamethasone how I love you Now, but how I will hate you Later! You pump me up, prop me up and fake-energize me. You temporarily let me feel "like me" again for 2 days. But how I hate you when you crash me later. As much as I read and ask, I still do not understand the bio-chemical-physio of  HOW steroids work on the body. One thing for sure, my body does react well to Dex steroids and my type of myeloma runs scared from Dex.

It's clear now.

If I take a break, my numbers go up. If I stay the course, I maintain livable levels. My labs this month revealed this. This sounds like "Duh Julie", but it really brings home my reality. Myeloma is incurable, it quickly comes roaring back, and as much as I would like to believe I will be ok, I am reminded monthly, I AM NOT! Sorry I mention over and over that I cannot believe I have myeloma. Yes, "Numbers Don't Lie", so slowly I am accepting I have incurable cancer and myeloma owns me. Writing it out here helps me. Telling you here helps me process my reality. Thank you, my invisible friends.

There's much discussion in "MyelomaVille" regarding aggressive treatments with the goal of "Remission" vs viewing myeloma as a "Chronic Illness" and continually treating it. 6+ years into this, having had "aggressive" treatments at onset and diagnosis, resulting in remission after my Stem Cell Transplant, which was only maintained with (almost) continuous myeloma meds, I am now on the "This is Forever and Chronic" bus. The race to "cure" and "remission" with intense, aggressive, body organ compromising treatments is overrated in my mind. I know I will ALWAYS need to be in treatment to keep myeloma from killing me, but I am ok with this. I know of too many, that were either too aggressive or too complacent. Tortoise treatment pace is ok with me, if I have some semblance of quality and happiness each day.

Aren't you just so "pretty" myeloma

Earlier this month, I had completed week #1 of Kyprolis + Dex, then had my weird scary heart issue (see my previous post for details). As a result, I skipped treatment week #2 as my oncologist and pharmacist did not want me doing my regular infusions, until the heart issue was further looked into and results from the heart tests were read. I've since found out I have a condition called PVC - (Premature Ventricular Contractions) with "normal irregularities". Not a huge concern, but we're watching and being aware..

But as a result of this little scary episode, I only did 4 Kyprolis infusions vs the normal 6 per cycle in a month. Yep, myeloma took advantage of that, and UP went my IgA. Yep, an eye opener for me, as I always think, "Oh, skipping treatments won't make a difference"...  well ha!! Skipping the one week, and then cancelling (my choice) the "make up" week, sure gave myeloma the upper hand again, but gave me the reality check I always need. I am so stubborn and such a hard-learner about this. If I could only get rid of my "magical thinking", and fully accept I am a cancer patient for life... Crazy how missing 2 treatments had such an impact.

So back I go, like a good chemo patient. Beginning cycle #7 yesterday. Monday Tuesday. Monday Tuesday. Monday Tuesday into May. Kyprolis and Dex you are my best friend and worst enemy, but you keep me alive. I embrace the Good days, and accept the Bad days. The chemo lab is my "new office".

Hi-Ho, Hi-Ho, off to chemo I go.

Now if I can only master the art of taking a good selfie
without the double and triple chin effect lol

Panda says: Chemo in, Side effects out! lol

I cut a banana the other day, and the pieces fell into a smile!
My version of a "banana split!"

Here's my stats for perspective:
Immunoglobulins explanation 
(I'm IgA myeloma) 
Normal IgA = 70 - 400, Normal IgG = 700 - 1600, Normal IgM = 40 - 230

Date                      IgA        IgG         IgM
10/18/15              1890       240         < 18
11/18/15              1440       233         < 18
12/2/15                862         230         < 18
12/30/15              482         262         < 18
1/18/16                426         228         < 18
1/27/16                432         221         < 18
2/10/16                551         227         < 18
2/28/16                635         226         < 18
3/22/16                533         242         < 17
4/17/16                717         251         < 17

Normal = 0 

July = 1.26
Aug = 1.01
Sep = 1.37
Oct =  1.58
Nov =  1.12
Dec and Jan = Not Detectable! thank you Kyprolis + Dex
Feb =  0.62 Ugh! Quite a jump in a short period of time
March = "Abnormal", but no M-Protein number mentioned
April =  Abnormal,  but M Protein value not detectable

  Be sure to check out Dr Durie's awesome informative videos here.

It's Spring for sure, when Mr Tortoise comes out of hibernation.
Aren't animal relationships so amazing!

We think he's enjoying all the wild weeds we've let grow for him

Our roses are so amazing this year!

I am so grateful to still be here
and live the beauty of another day!

Today in the chemo lab I met a lovely patient who has just been diagnosed with end stage cancer. She commented that "her doctor gave her 4 months". She was quite upset with this prognosis and felt she should have been given "more hope and more options". I told her my cancer is "terminal" and incurable. I told her I've known this since diagnosis. I've known my precarious status for 6+ years now. Sometimes it's better knowing "the truth" and knowing the "medical prognosis". I told her I knew my status from "Day One" and that helped me be strong and make the choices I did. She mentioned she's considering not continuing with harsh traditional chemo anymore and trying "holistic naturopathic options". I mentioned I have had great success with "traditional chemo and traditional treatments". I let her know I've been battling 6+ years with up and down success, but I'm still here and so grateful. One treatment at a time. One day at time, one month at time. Keep coming back. Don't give up. There are so many options now. I commented that "Less IS More" and it does come down to "Quality of Life"... Too many are fixated on Cure and Remission. I gave her encouragement to "stay the course", follow her oncologists' recommendations, read a lot online about her type of cancer, be informed, know your options, go to support groups, consult with trusted others, don't lose hope. Every day matters. She said I "inspire her" with my effervescence and sunny personality. I thanked her, and said I hope to see her next week at our weekly infusions. She hopes so too. 

As I walked out I reflected on my "terminal" status. I reflected on how lucky I am that treatments have "worked" for me. Yes I've been through 5 chemos, countless types of treatments and countless other supportive medications, but I am still here. I thought about what I would do if I KNEW I only had a few months...
What would I "do" if I REALLY Knew My Time Was Up?...

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


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 capsules)
Pill form Dexamethasone Steroids (40 mg!) paired with Omeprazole
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12- to build those cells!
.81 Aspirin to prevent DVT, Revlimid complications
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral

June 2010:
High dose IV Cytoxan
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
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?

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.