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

Monday, April 29, 2019

Adventures in PoopVille (Updated!)

Hello 4.29.19

Hello Friends-

Whoohoo we've almost made it through April! This life becomes more comical and tragic all the time for me. Some days I can laugh, some days I cry, some days I rage. I've never experienced the spectrum of EMOTIONS as I do now, daily. With each challenging "episode" I am breathing deeper, keeping more in perspective, and calming myself more effectively. So much of life, is not always the "What", but deeper in the "How" we process it.

Between my On The 9's posts, I always have several topics I think about and want to write about. But there's always some drama, a hilarious or serious event, that seems to happen just prior to my post, so off I go in another direction. For several posts now, I have wanted to chronicle and detail allllll my various treatments and side effects for the past 9+ years. See for me, reading about other's successful myeloma treatments is so helpful and enlightening. When I was first diagnosed, and when I become "refractory" to my chemo cocktails, stumbling on other's blogs, with detailed personal and medical stories, helped me so much. So for those who've found my blog by chance, or for my virtual warrior friends, I hope reading about what has worked for me, for how long, and at what side effect "cost", is helpful and informative for you.

But that detail will have to wait for another post, as our absurd bathroom activities are just too comical to not post :)) I have a few funny stories, but if you're squeamish about body biology... skip reading...
Ironically, bathroom activities are interrupting me AGAIN... so I'll be back :))
And I also want to tell you about my recent labs...
I'll be back, after the poop episodes and my Velcade double injection appointment.

The constant sabotage is REAL :))))))


First of all, I'm crashing sooner from my Monday treatment. Right now, I feel nauseated, blah, tired, red in the face from the steroids, and over all yucky. But in THE BIG PICTURE OF THINGS, I'm ok. It's truly amazing what we can all get used to, as life evolves us. I constantly self talk, self counsel. Thank goodness we don't have brain banners on our foreheads with our thoughts! I am moving forward each day, containing and compartmentalizing my complicated feelings, emotions and thoughts. I am moving through the stages of What The Heck, How Can This Be, This Is Not Real, Universe You Have The Wrong people. I've gotten a handle on my Denial, Anger, Disbelief, Frustration, and moved to Acceptance, Understanding, and Patience. What Eevvvveeeerrrrrr Life, It Is What It Is. I am not in control of the What, just in the How I Process It, and What I Do With the Processing.

But there are times... when it's just so ridiculous...

At this time in Jim's Alz illness, he is still mobile, but not very steady, and we have dang slippery tile with a few step-ups in our house. So the risk of slip and falls is always there. I tell him all the time, if we have mobility we can do this. If we don't, simply put, we can't. Oh the things we take for granted when we are well. Yes, MOBILITY IS EVERYTHING. Mobility to get to the bathroom is everything to me!

So with my sudden and surprise lower GI side effects, I am periodically in the bathroom for "extended" visits. Well with Jim's bathroom "personal care" needs now, there have been times, well many times, when he needs me and I Can't Be There for him, right then! The other day, I was in one bathroom with my "cleanse", and he called for me to help him in another bathroom. Oh No! I can't get there in time... what disaster will I find when I can get there...Yes, thank goodness we have multiple bathrooms in our house, but the bathroom juggling events are hilarious. I called out "instructions" to him, which in his cognitive status, is a joke, but my hope is something I say registers. I let him know I couldn't get there to help him, and to be sure to do... not do... blah, blah... I'll spare you the details.

Sometimes it works out, sometimes it doesn't. Sometimes I can move fast enough to get there to avert a disaster with him, sometimes not. I'm keeping Walmart and Costco in business with all the cleaning supplies and wipes I buy every other hour. There have been times I am helping Jim, and my own body says... IT'S TIME... NOW!... so I leave him, threatening him with all kinds of mean things if he tries to do anything but Sit There... race to take care of my biological needs, hoping to get back to him in time to prevent a "disaster". Sometimes it works out, sometimes it doesn't. I've put a chair in each bathroom, as his biology takes time now, or we are thinking, the body function-brain disconnect is complicating "things" for him.... Our adult kids are so great, and have helped with this lovely task when they're over, when I was having Meltdown Overload, or I'm not feeling well, as Jim's needs have sadly exponentially accelerated.

Sunday I brought home Stonefire take out. If you live in CA, you know they have great quality BBQ, salads, etc. I had been to a memorial service earlier in the day, but didn't eat the brunch, as I was too many freeways away from home, and you know by now, I don't take ANY chances with eating and not being close to home. So by the time I got home with the delish food, I was really really hungry. Stupidly, I ate a sample of everything I ordered: Tri Tip, Ribs, BBQ Chicken, Spinach salad, BBQ Chopped salad, bread stix, etc. I ate more meat at one sitting than I do in weeks, as I'm not a real carnivore. Sundays are usually "safe eating" days for me, since Mondays are treatment days, and I'm mostly recovered by then. Welllllllllllllllll, guess what happened.... OMG around 5:30am, I awoke with cramps and was called to the bathroom in a way my usual chemo cleanses don't ever affect me! Talk about body rejection and feeling SICK. Cold sweats and all, and I thought I would cleanse from from both ends at the same time. OMG I felt awful. Haven't experienced that for years and years. So I was of course there for an extended time, felt completely, totally exhausted and "drained"... went back to bed, hoping to sleep for a while, and then... I hear Jim stirring... and so began my Monday... no wonder I'm so "pooped out" and beat up today...  And sooooo... the Adventures in PoopVille continue....

Maybe I'll install double golden toilets for us :))))))

Ok, enough Poop News... here's my amazing body organ labs: 

Creatinine = .56
GFR = 102
Alk Phs = 63
AST = 18
ALT = 18
Biliruben = .6

CBCs not as good, but ok:

WBC = 2.0 low
RBC = 3.81 low
HGB = 12.5 ok
HCT = 38.3 ok
ANC = 1.51 low

"If your blood is low in neutrophils, you have a type of leukopenia known as neutropenia. Neutrophils are the white blood cells that protect you from fungal and bacterial infections. ... " 
Yep, always immune compromised. Always fearing Cootie Attacks!

Next Myeloma status labs will be end of 2nd week of May for May 13th Dr appointment. Will be interesting to see how I'm doing with the increase of Velcade from 1.59 to 2.09

I met with my new Dr on Sunday! Recognize him??!!
Just kidding-
Met Dr Ken at a social event recently-
such a fun, smart, funny, wonderful man!

Ok enough stinky news, let's end with our beautiful, deliciously scented roses

If only I could share the scent thru text here!
So Ahhhmaaaazzing!!!

Thanks for reading and laughing along with my ridiculous life. Hoping you and yours are doing well, and if you're a myeloma warrior, I hope your treatments are going well, and not causing you much drama! Thank you for all your wonderful, supportive, caring comments!

Friday, April 19, 2019

Meltdown 101


Hello world...

This week was total MELTDOWN week for me... Total Emotional Meltdown :((

So much to tell, share, let go of... but I am too beat up, too exhausted...

So here's the headlines:

Had to call 911 for my hubby on Tuesday, as "he fell and couldn't get up"...
He was taken to ER, fortunately ok, nothing broken, fractured
On top of that, he's really declining each day
New challenges for him, me, our family every day
Never ever expected any of this sadness and illness chaos
So much physical and psychological challenge every day...
So much body betrayal on all levels

Had my monthly Dr appt on Monday, with lousy news:
IGA up 200 points, @ 1440 ...(normal = 70-400)
Last month's "no M Protein" was a misread or fluke
M Protein is actually up, at 1.19 ...(normal = zero)
Beta2Microglobulin is 2.3 ...(normal = 1 - 1.8)
Light Chains = low or normal

New changes:
My Dr and I discussed increasing my Velcade and Cytoxan dose
If you've been reading my blog for a long time, you know my response to that... NOPE!
One change, one increase at a time for me
Less is more
Let's see if one increase works
Let's see which increase causes which side effects, rather than increase both, and not know what side effects are happening from what

So I agreed to increase the Velcade dose
Received 2 lovely injections on Monday
Had nausea later the next 2 days
Ok now, better
Hopefully this increase will pound myeloma's ego back a bit

I had a complete emotional meltdown this week... not about me
I'm learning to reach out and ask for help
It's ok to ask for help, it's ok to not be strong
I call medical professionals more now, than I ever did with my cancer situation
I cry, yell, sob, scream, talk to myself, talk to the Universe, and experience the spectrum of intense emotions more with my husband's situation, than I ever did with my myeloma diagnosis, treatments.
I am just completely overwhelmed and devastated on so many levels.
Of course my treatments and side effects complicate it all, but watching him decline and see Alzheimer's completely steal who he is, how he is, what and who he used to be able to do... is just so incredibly tragic, awful to see and live, day in and day out...

I'm sooooooooo beat up...

I will write more next time... I hope.
Thank you for reading and caring, and checking in!

Tuesday, April 9, 2019

This Life, These (awful) Challenges, These Joys

Hello 4.9.19
Hello April
Hello Friends
Hello another month of unwanted challenges and wonderful times
Hello to tears, frustrations, meltdowns, laughs, good times and gratefulness
Hello to Life with 2 Terminal, Incurable Illnesses...

Here I am, riding on 40mg Dexamethasone Steroids, writing this post, late at night, early morning... as again... my life is just so crowded with sooooooooo many needs and caregiving, but also with many wonderful times. You don't even want to know how late it is, rather how early it is, this 4.9.19 lol.

Crazy how my husband's Alz situation has so taken over our life, and Myeloma is somewhat in background now. What? Myeloma in the background!! I hardly have time to focus on me, pay attention to my side effects, and take good care of me as I used to... We'll see what my labs say in a week about this. I really don't know how I am doing all that I am doing. Just one foot in front of the other, one task at a time, one need at a time... And it's so bittersweet when Jim says "Thank You" for the caregiving things I do. He'll thank me for giving him cereal and milk, saying "how delicious it is"... one foot in front of the other, one task at a time, is what I do. I'm not always a "nice" person. But I am learning fast to edit my words and what I say, constantly telling myself, "Just Shut Up Julie" "Shut Up, Shut Up, Shut Up"... "It's the disease Julie", "He can't help what is happening to him, and what his needs are".... Laundry, laundry, laundry. Living with 2 heads on my shoulders... Animal care, but lots of animal laughs too. Lots and lots of bathroom "activities". Lots and lots of cleaning and sanitizing. Then Luci the 9 year old kitty cat throws up. Something has changed with her, and all the food I am trying, is not agreeing with her... remember when I was diapering our 20 year old cat... what a wonderful comedy show my life is! But I always remind myself, except for our incurable illnesses, most of my current responsibilities were a previous "choice". All of the critters we are responsible for, we invited to live with us. Bodies get old and fail. Bodies get sick. Bodies need care. I, we, committed for life, human and animal. So I march forward, one chore at a time, trying to take healing deep breaths... reminding myself to just breathe...

I say myeloma is in the "background" now,... as myeloma has CONSUMED my life and thoughts for over 9 years. Side effects, treatments, appointments, researching treatment options, talking about it to anyone that asked about my situation, constant wondering Not "If", but "When" my current treatment cocktail will fail. No I am not a pessimist, remember Myeloma is Incurable, Terminal, but Treatable... Reality is Reality. I feel so fortunate right now that my current crazy "Monday Medication Madness" of 40mg Dex steroids, 1 Velcade shot in the "belly jelly", then 8, yes 8, 50mg Cytoxan pills with dinner, is still "working". Add in Acyclovir daily to prevent Shingles, low dose Aspirin, a few vitamins- B12, D3, Thyroid pill, and Mepron (anti viral pneumonia liquid, when I remember to take it)... I just cannot believe how my body can digest and handle all this! All my organ status labs are good, very good according to others who's aren't as low as mine. Maybe it's all the diluted (100%) Cranberry juice I drink for hydration. Yes, myeloma has taken a back seat to Alzheimers. Insane situation from every perspective. Oh wait... lest I forget... my myeloma is still over 3x the high end of normal... I'm in "ok", not ok, status...

I still have Surprise Volcanic diarrhea, which leaves me housebound on crash days, and other days, as there's often a lot of "Surprise" to this side effect. This all too familiar event visits me on days I think I'm ok. Or it visits me at a time of day that surprises me. So thankful I am home, when this biological surprise sabotages me. I was out in the horse arena yesterday, lovely warm day, soaking in the rain nourished green trees, green hills and the flowers bursting out, when suddenly, and yes I mean Suddenly, it's wow!... get to the house now Julie! I "barely" made it! I'll spare you the details. That's the suddenness and surprise of this crazy cleanse side effect. No cramps, no pain, just total Urgency. It's the "cleanse" non cancer patients "pay for" lol!

How can life be so awful and wonderful, at the same time. Why did we both get so sabotaged with such serious illnesses. Yes I always knew Jim would age faster than me, being so significantly older than me, but seriously Universe... all he wanted to do in his retirement was walk without pain, garden our property, do healthy outdoor chores, enjoy the animals and his family, etc. His life is completely stolen from him physically and mentally, with moments of clarity here and there... Our life is a bad movie, that I just can't believe I am unwittingly participating in. But again... I have soooo much to be thankful for, in others areas of my life.

My labs from Sunday show I am borderline "Neutropenic".
WBC = 2.4
ANC = 1.2
RBC = 3.5
HGB = 11.7
GFR = 97
ALT, AST, AP, BILIRUBIN = all quite low (low is good in this case)

I take the Myeloma specific labs later this week, for my Dr appt April 15th. Can't believe how fast the weeks go, but I am glad they are, for multiple, complex reasons... but in this case, so I can see my monthly cancer status. How crazy this 9 year journey of living Lab test to Lab test is, just to stay in touch with my survival status. Currently my IGA "is only" 3x the high end of normal" lol, at 1260, (normal rage is 70 - 400). I didn't get around to taking screen shots, that's why I'm reporting all this like this. (Booo on Kaiser's website "upgrade" view, as I have lamented previously.)

I mean seriously, how nuts is it to live like this, wondering when myeloma will overpower the treatment, and we have to race to figure out the next "smarter than myeloma" treatment plan. When I write all this, I just smirk and shake my head, how UnReal all this is... what the heck happened in my life... oh well... onwards, one challenge at a time...

In in between all this medical nonsense, chaos and unbelievable physical and psychological challenges... our son Scott turned 33 and our daughter turned 31! We managed some wonderful celebrations, that I never thought either Jim or I would be here for. How "lucky" are we!

Here's a slice of the happy side of our life:

This Is Us

Happy 33rd to my Amazing son

Birthday boy Scott and my dad Hal
Who's 92, and in better health than all of us!

Ashley and Jim and the doggies

Birthday boy and the doggies

Yippeee! Our hens are laying an egg or 2 a day

Wonderful mini visit with Alissa's 
amazing childhood friend Michelle

Chemo today before the birthday celebrations
Cancer knows no holidays

Spa date with the girls! Alissa's childhood "pony pal" friend, 
who's now a DVM! So proud of you Dr Courtneigh!

My Amazing birthday girl!

The 31st birthday crew! Love them all! Lucky me!

And my "famous" pick your fave flavor
Ice Cream Mud Pies for the Birthday "kids" 
They buy the ingredients, I "assemble" ... 
Another eating party coming soon!

I'm so fortunate, so lucky, so blessed
in so many ways... I work on keeping my sadness
in check and in perspective, moment by moment

And so, another day, week, month. Another set of challenges beyond challenge. I sometimes have chest pains from the stress. I will yell at the Universe later today, tonight, tomorrow, during my steroid crash... but wait... I don't have much time to focus on me right now. Perhaps that's a "good thing"...

May your life bring you joy, happiness, dreams fulfilled, and the strength to confront your "challenges". Thank you for reading and caring about my life and my medical and emotional roller coaster.

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.