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

Friday, November 29, 2019

GoodBye November! (Snow Road Trip update!)

11.29.19
And November's a wrap...


Hello to December in just days...  Big Month of my 10 year Myeloma diagnosis!


CA had a crazy winter storm the last few days! Snow in areas that rarely get snow! So we took a drive today. Will be back with some really awesome pics!

Hope you had a wonderful Thanksgiving with your loved ones. We did.

I'll be back to share some super fun pictures :))

===========================

Yes my BIG 60th Bday came and went, had several wonderful surprises at home, but no BIG GIANT celebration... I'll post some pics on my next Dec post.

Thanksgiving came and went, and had a wonderful little family dinner at home... will post a pic in my next post also.

But what was the BIG beautiful news in all of this, was the incredible SNOW STORM So Cal had. So many of you reading this will be, ya ya big deal... Snow. But for So Cal, this was a Winter Wonderland experience for all of us. Not often the snow level gets down as low as it did for this storm. It was fun to experience, but also a reminder to me that I wouldn't, couldn't live in super cold weather at this time in my life.

So caregiver Chris and I loaded Jim in the car, and took a quick drive to the local mountains for a sightseeing trip. I did worry, what if the road closed, what if a storm moved in quickly, what if we got stuck somewhere as so many drivers were experiencing. Any of those would be disastrous with our medical complications... But I tossed caution out the window, and off we went. At one point the opposite side of freeway suddenly had zero cars and traffic, for miles and miles...  I suspected my worst fears had come true: maybe the freeway was closed due to snow and ice! We were going to be stuck! Have you seen the news reports of freeways at a dead stop with thousands of cars going nowhere! People stuck in their cars for hours and hours! I always wonder what they do for heat or a/c or supplies or going to the bathroom! Truly one of my greatest fears since both our diagnoses!
Turned out HazMat closed the freeway for some sort of hazardous spill, and it was cleared up when we returned on that side. Thankfully, we made it to the beautiful snow covered hills and back with NO drama!

Of course before we went, I had to wait for my lower GI system to clear to be able to go on this little road trip, and couldn't eat or drink before or during the tour, but that's the price I've learned to pay for any event I want to experience. They say, get out and have fun. Just go Julie. Live Life. Be Happy. Do Things. Don't let all the medical issues limit your life. Ya Ya... few can fully understand the hindrances I have and what prevents me from doing much at all... I also think friends and family have "cancer fatigue", where they are tired of hearing of my status, side effects, how my life has changed, and how battling incurable cancer for 10 years has affected me so deeply. I think I'll write a pity party on that, next blog :))

In the meantime, enjoy these beautiful snow drive pictures!

Winter Wonderland

So pretty!

So much snow everywhere!

This is So Cal! Seriously!

Caregiver Chris and me

Unbelievable snow
at the shoreline!

Pyramid Lake

This lake is usually full of boaters and seadoos!
Lucky us, beautiful drive accomplished


Welcome to December everyone! Hope you can enjoy and not stress over the holiday busyness! All our medical stuff has so changed my ability to do things, and therefore... I have had to accept my inability to do what I used to do. So cheers to hot chocolate, spiced cider, a crackling fire, friends and family, and no malls for me :))






Tuesday, November 19, 2019

Big Birthday Coming Up... Sorry Myeloma, This Time I Won :))

Hello 11.19.19

I generally have my blog posts written in my head, ready to post on the 9's, but of course all our darn issues and medical complications here, always seem to sabotage my best writing intentions. I often send drafts to myself at the most unusual times, as I seem to have some of my most inspirational writing moments when I'm in the Horse Arena Picking Up Poop!!! ahaha :))  Or very late at night when brushing my teeth. Have you ever looked at the patterns of your toothpaste splatter in the sink as you brush your teeth? I see "messages" there all the time...

Sometimes, I think I should just post my raw, unedited thoughts, then I realize I am writing to World, and need to be careful what I put out there... but I love Authenticity and Spontaneity. I love to just write from the moment, from the gut, from the heart. Just letting it all spill out from what's circulating in my damaged brain.

So I think I will this time... but after this little "announcement"...

Today is "gradual" crash day from yesterday's "Monday Medication Madness Day", so I'm starting to feel kinda yucky... Yes still weekly treatments of 40mg Dex Steroids, 1 Velcade shot in the belly jelly, 8 Cytoxan Cyclophosphamide capsules at 400mg. I keep posting about this, as I'm always so INCREDULOUS how my body tolerates all this stuff injected in to me, ingested, digested in my tummy. And that I do this every single week, no breaks, no time off, every single frkin week. I think it's all so amazing I'm still here, and coming up on my 10 year Myeloma diagnosis Anniversary next month!!!

And speaking of Anniversaries and Birthdays... drum roll please... :))
This Friday, Nov 22 is my Big 6-0 Birthday! Yep, diagnosed at 50 and here I am, 10 years later, turning 60, against all the odds and "predictions"!! Never, ever thought that I would see 60. Many would "hide" this number from the world, but I'm super duper proud I am still here and able to do and be me still. 60 years on this earth! Incredible. Sounds so OLD, but I sure don't feel OLD on "good days", and sure don't feel like the stereotype of what 60 sounds like, or I used to associate with 60. Whoohoo, I'm OLD!! I'm a "senior citizen" ahaha... sure don't feel like it mentally! And on Dex steroid days, I don't feel like it either!


Be right back... with my raw and honest post from the horse poop... :)))
===============

Hoping to not offend any of you battling other cancers, or all the other awful life "illnesses" and challenges out there everyone is dealing with, but honestly, there's just something different about battling the Life Long "death sentence" of Myeloma. From day one of diagnosis, I was told THERE IS NO CURE FOR MYELOMA, BUT IT IS TREATABLE... ya ya I thought then, no BIG DEAL. Treat and Get on with life, I thought at the time. I really wasn't that scared or worried. Just take some meds, do the stem cell transplant, and get on with life, get back to work, get back to life, get back hobbies, etc... ya ya, Terminal, ha, it's Treatable, they said....
WHAT I REALLY DIDN'T AND COULDN'T PROCESS AT THAT TIME, WAS THE REALITY OF LIFE LONG TREATMENT IF I WANT TO STAY ALIVE...
What I really couldn't and didn't process was what it would be like to treat an Incurable Cancer FOR LIFE!
What I really couldn't process then was the Continual Cycle of Treatment and Side Effects... Every Single Day, Every Single Week, forever and ever and ever and ever, if I want to stay alive.
Can you even grasp the concept of doing chemo EVERY SINGLE WEEK, AND BEING SICK EVERY SINGLE WEEK, NO BREAKS, NO TIME OFF.
Can you even grasp the thought of ANTICIPATING doing chemo every single week, and anticipating and dealing with yucky side effects Every Single Week. I couldn't grasp or process it then, and I still wake up shocked every single day. Shocking writing this, as THIS. IS. MY. LIFE. This is my Reality.

I'm invited places all the time. I want to make plans all the time. I want my previous life back all the time. I want to work, play, do, go, be who I used to be, all the time. I want to go back to being "normal". I want to say Yes, to going places, doing things, playing, working, doing projects, having the energy and normalcy to do... but I just can't. The fatigue from myeloma and treatments and side effects is disabling. I feel more and more nauseated as I write this, as Monday's chemo side effects are hitting more and more each minute. I don't know if I'm hungry or nauseated. If my head hurts from thinking, or from the medications. I'm thirsty, but I don't want to swallow or drink anything, but I know I must. Everything is yucky today and tomorrow and the next day. Imagine a life of forcing most anything and everything. Of doing everything and anything because you HAVE TO, not because you want to, like BEFORE MYELOMA... My Halloween decorations are still sitting out, needing to be put away before Thanksgiving and Hanukkah and Christmas, and New Years comes. There are storage boxes to go through, years and years of stuff to go through... but myeloma always sabotages....

Everyone says get out there and do things. Live your life. Be happy. Go places. Ha! Ya right. And have near misses with GI issues. Force going places when you feel sick and dizzy and achy. People just can't grasp that I look as good as I do, but I feel so yucky. My personality is to "grin and bear it". "Fake it til you make it". And I'm a natural communicator. So I force energize myself and my conversations, when I really don't have much helium at all. But then there are days... when I just can't. And that will be tomorrow, Wednesday, my worst day... But I still have to pull myself together to be "boss lady" here, as I'm still in charge...


They say don't make cancer your life, or your identity... Oh really? 
With treatment every frikn week. 
Side effects every every frikn week, how can cancer NOT be my life?!
Live your life they say
Be happy they say
Get out and do things they say
Be happy they say
Yes to all of those, but how, when you feel so awful?
How "happy" would you be with a Terminal Cancer Death Sentence?
How "happy" would you be with a husband with Terminal Alzheimer's who used to do EVERYTHING and was MY CAREGIVER!
They say, get on with your life, don't make cancer your life, don't let cancer control you. 
Really how is that possible when treating terminal cancer IS MY LIFE, every day, every week, forever and ever to my infinity.
Really, how can I not make cancer my life, when cancer crept in my life and made my life all about cancer, and illness, treatments, and sadness, and overwhelming challenges every day... This is not a choice. This is not something I opted for, or chose in my life. It's not a decision I made. It's a decision that my body made for me. Yes how I respond psychologically to all of this is a choice, but what happens to me physically, I have little control over... 

Everyone says just be happy. Well I am very happy some days. I do feel ok some days. But my REALITY IS I AM A CANCER PATIENT FOR LIFE. NO OPTIONS IF I WANT TO STAY ALIVE. I must do chemo every week to stay alive. I must suffer with side effects if I want to stay alive. Cancer is my life, as Cancer invaded my life and became my life. It is my reality, and I cannot pretend differently. 
Most other cancers can be treated, and the patient achieves remission, and moves on with life. Myeloma is different. Myeloma is incurable... myeloma is for life. 

So cheers to surviving a decade after diagnosis. This makes me happy and proud! Cheers to being as "well" as I am, after 10 frkn years of treatment and my body trying to kill me. Cheers to turning 60 on November 22! I had plans to celebrate in many different ways, but reality is that can't, won't happen because of chemo side effects. This is not a poor me, pity party. It's my reality. No I am not depressed. No I am not angry. I am just explaining the Reality of my REALITY... 




So I pulled myself together the other day, and didn't eat or drink beforehand, and managed to get me, Jim, caregiver Chris and 3 of our little doggies to the super fun annual Bark For Life event. This is the doggie version of the American Cancer Society's Relay For Life. Here's a few pictures of my "Mutts For Myeloma" Team. So much fun! Also, my Myeloma blog buddy Matt came out to the event so we could finally meet up! It was so wonderful to finally meet in person! Thank you for making the drive Matt! Pretty amazing all the incredible people I've met through this blog, despite awful myeloma being the catalyst for us meeting.


Go Team Mutts For Myeloma!

Aren't we all cute!

Look at all the cute doggies!!!

He's an 8 year survivor!

Me and my daughter Alissa and our darling "littles"

I'm pretty worn out here 
But "fake it til you make it" right!


Thank you for reading and checking in, and caring about my life and story as you do. Hope all is good in your life, and if you're a myeloma patient or cancer patient, I hope your treatment road is as tolerable as possible. 

I'll be back to edit this again, and again and again. 





Sunday, November 10, 2019

So Much Myeloma Everywhere!!!

Hello and Goodbye 11.9.19
Hello 11.10.19

So yesterday I attended my local Myeloma support group, that I have been attending for years... (I'll have to ask our facilitator how long I've actually been going)... Wonderful group, wonderful facilitator/leader Theresa! I have benefited so much from attending this group. Have learned so much from everyone's stories of treatment, their life with myeloma, and sharing cancer survival skills... The meetings are informative and emotional. Some meetings are Medical/professional speakers, other meetings Members sharing their Myeloma stories. Yesterday we had a large group, with quite a few new members. Newly, recently diagnosed, to one man, WHO HAS SURVIVED AND LIVED WITH MYELOMA FOR 32 YEARS! YES 32 YEARS! That's not a typo! I still can't get over it. His story gives all of us such hope!!!

Driving there I was teary and emotional, as I haven't attended in months due to my husband's rapid Alzheimer's decline, and the challenges of both our illnesses, along with the recent CA fires surrounding that area and mine. But on top of those emotions, I was super sad and reflective because my neighbor and special myeloma buddy Gary, (who I attended with for years (along with his wife Pat, and my hubby Jim)... had recently passed away this August... So driving there alone, without any of them, really affected me. Just so much loss on so many levels personally, along with seeing the burnt hills, so close to homes and the Reagan Library, was just so sad on so many levels...

At the meeting, there were so many stories of all kinds of myeloma treatments, successes, failures, hospitalizations, medications, medications, medications, stem cell transplant stories, challenges, challenges, challenges, etc... but what impacted me the most, were the stories of horrific bone issues, compression fractures, bone breakage survival, bone surgeries, Kyphoplasty, etc... I need a lesson in Human Anatomy and Physiology to know what parts everyone was referring to!!! Brought back memories of my status this time last year, with my awful painful plasmacytoma and lesion issues, resulting in Radiation in December 2018... But in comparison, I feel so fortunate with my treatment success and limited pain issues compared to so many... more on this... as my Horse Farrier is here now, to trim the horses hooves... then more "stuff" here to attend too, then off to take weekly blood tests, then, then, then.... see there always so much going here... but in perceptive... I'm so very lucky...

In the meantime.... here's our Anatomy lesson for the day... as so many bones were mentioned in medical terms, I know not what they are!!!



=====================

I'm back :)) ....

There were so many stories at the meeting regarding how most people were initially diagnosed with myeloma because of severe bone pain, bone issues, bone breaks, bone surgeries, etc, it was mind bending. So many stories of kidney failure too. When I was diagnosed, my presenting symptoms were extreme horrible blood test results (clearly showing myeloma), extreme fatigue (I thought was work/life exhaustion), extreme anemia from bleeding out (which I thought was allergies and "girlie change of life"), breathing issues (which I thought was from being out of shape), and a terribly compromised immune system (which I thought was from being exposed to so many students).

But the stories! OMG :(( One lady, who has been a member for a while like me, and also a horse gal like me, was diagnosed when her neck/spine collapsed. Area C-something in the graph above. She was at her ranch, teaching riding lessons, and doing something in the barn, when cccrrraaaacccckkkk, went her neck... So many stories of extreme bone pain, bone fractures, lesions, on and on and on... So the "pity party" I came to the meeting with, quickly turned to gratefulness of my status.

Whoops, here comes Jim needing help, and our caregiver has left...
I'll try again to update...

===============
Thank you loyal blog followers for your concerned messages regarding me not posting on the 9 yesterday...
Just so much going on here, and I never get the private time to write, as I used to... Not enjoying being "boss lady" in charge of "everything"....


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
B-12
.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?”)

Infections

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.