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

Thursday, September 19, 2019

9.19.19 ... 9.9 Years and Counting Towards 10

9.19.19


The moon and the moonlight has been so beautiful these past nights. Actually all summer long, the full moon has been stunning. Glowing, intense, alive. There's something about summer nights that really affects me. Energizing and Renewing me. The peacefulness of night, the calm of the end of another day. The stars sparkling, twinkling mysteriously in the sky. The crickets clicking, the owls hooting, the night birds chirping, as they settle in the oak trees for the night. Moonbeams shining down on the horses, as they relax from the hot day of waring with biting flies. The moon, a magical flashlight from the heavens, bathing everything in a soft glitter. I love the warmth of summer nights, and soon, the crispness of summer ebbing into fall. I contemplate another day battled, another day survived. Giving me hope, but also giving me sadness.


Every night, after the challenges of the day, I "escort" the 3 little doggies outside for their nightly pee.  They're so funny how they won't "do their business" without me actually walking out with them.  But this is how I get to see and feel the magic of night. This is how I get to see and feel the moon, that most miss, by going to bed early. My nightly routine has become me putting Jim to bed, sometimes easy, sometimes an ordeal... more an ordeal when I am not well from weekly chemo side effects. You know that feeling when you Just Want To Be In Bed.... Like Now! And you don't want to deal with Any Thing Else? That's my Tuesday and Wednesday nights. The yucky side effects creeping in, dragging me down, sucking me into awfulness. Nausea, achyness, swollen, bloat, that metallic taste in my mouth, headachy. That over all chemo crash yuckiness, the punched in the gut feeling... but when I'm outside, not matter how awful I feel, the moon and the beauty of the night, somehow replenishes my spirit and gives me hope to move forward to another day.


But as serene and energizing and peaceful this can be, it also triggers sadness in me. A sadness some may find selfish, but it's a profound loss type sadness. Being outside at night, especially on warm, moonlit summer nights, reminds me of days gone by... summer nights full of life, fun, laughter. Summer moonlit horseback rides, summers full of health, happiness, and a sense of carefree that only youth and health allow. I love these moonlit nights, but they make me sad now. I feel so much loss. I am so aware of what I put off, of what I didn't do, of what I didn't accomplish... that now, I'll never be able to do. Don't get mad at me for saying "never". I have to accept my fate. Our fate. Our body betrayals. Being outside at night slams my realities in my face. The beauty of the night, of the moon, only intensifies my losses. Yes, I have so much to be grateful for, but summer nights make me so sad, so aware of what can never be again...

I always look up to the heavens, to the night sky, to the moon and stars and cry out, laugh out... WHY? WHY me? WHY us? How come? How did two people wind up so sabotaged? 2 incurable, terminal illnesses at the same time. I know, I know. The world is full of unfair stories. Everyone has challenges. Everyone has mountains to climb. Rare is it the person or family that plans, and those plans, dreams come true. Most stories are of unrealized dreams, of deep sadness and loss. I know, I know, I am so very "lucky" in so many ways... but I hurt. I am sad. I am frustrated. I am devastated for our losses. For what could have been, that cannot be now. Warm summer nights remind me of what was, what could have been. What should have been... 

The doggies circle around me, sensing something. They tentatively lick my leg, or hand. Their tails wag in happiness. They have no idea my sadness. Neither do the horses. They have no idea how I miss those warm summer nights with them, hearing their barefoot hoofs softly, silently pound the cooling dusty earth beneath them. How I miss the breeze whispering through their manes, where I hold the reins. I miss the sweet scent of horse sweat under my saddle. The owls hoot, the night birds quietly chirp, the crickets click, and the horses swish their tails, while scratching and grooming each other, before finding that perfect spot to lay down for the night. They have no idea my sadness. They have no idea how I miss them, even though they are right there. The stars sparkle and wink, the moon shines brighter, lighter...  I pull myself together... I force acceptance on myself. I shake my head, but I can't shake the "Why"... But I am grateful, no matter how sad I am. I am grateful for the life we still have, and the miracle that I am still here, 9.9 years after my myeloma diagnosis. I am still here. I am still here...











Monday, September 9, 2019

Crazy Times, Crazy Lab Results, Crazy Stress, Crazy Myeloma, but GOOD News

Hellooooooo 9.9.19


It's crazy Treatment Day, with a side of  Roids!
Yes, it's Monday Medical Madness Day with 40mg Dexamethasone Steroids, so I'm flying high and wanting to have fun, in all this crazy illness insanity between me and my hubby!

I 'll detail my current Myeloma status labs below, after my Velcade appointment. I do screenshots from the Kaiser website, then download, then upload, and hope to find time with all my hubby's "demands" LOL!!! It's like I have a 180 pound Toddler, who wants to follow me everywhere and try to talk about things, but it's mostly "nonsense" coming out of his mouth :(( But I can read his mind after 39 years, so I figure out what he's trying to convey. So so tragic. Losing mental functionality is so awful... but all this stupid cancer stuff is too. I just can't wrap my head around both our terminal, incurable illnesses. But I'm doing better now, not having the intense meltdowns I did a few months ago. Acceptance and moving forward daily, is key to survival...


I used to love to write my blogs late a night, when the house was quiet, and he was asleep in his chair, or in bed, the doggies and all the critters sleeping, while I had the windows open, listening to the summer breeze, crickets and the hoot owls hooting... so peaceful, so serene...

NOW... omg, I NEVER get any time to myself... but that's another story perhaps for a different post.

So coming later later later....
Screenshots below :))

IGA
M Protein
Beta2 Microglobulin
CBC stats
Organ function stats

And you know what... the results are "shockingly" ok considering all the STRESSSSSSS, super random eating I do, and all the non stop, I never get to rest, never have time to be a "cancer patient" lifestyle I have here. Except on days 2, 3, 4 after Velcade, Dex, Cytoxan, I do feel kinda "gross", so I do sometimes, just have to sit and feel awful.... BUT NOT TODAY, THANK YOU 40mg DexaMETHasone :))

HERE THEY ARE!!!


M Protein still Abnormal
But down points every month
Was over 1.5 earlier this year
And was 4.5 at Diagnosis, Dec 2009
Right in the middle!

So grateful my Kidney function is still good! 

Can't believe my IGA is still coming down
even after being on this triplet of
40mg Dex, Velcade, 800mg Cytoxan for almost a year now!
But I'll take the results, 
even though they are outside of the normal range

Not bad, and hoping it stays in the Normal range,
although at the high end




Thank you for checking in, and caring about my roller coaster life.
Hoping you are doing well if you are a myeloma buddy, and your treatments are effective, healing, and manageable.
If you're friends, family or happily not touched by all this medical insanity, I hope you are having a wonderful end of your summer, and all is good with you and yours!

https://myelomabeacon.org/news/2019/08/29/tnb-383b-for-multiple-myeloma/
There cur­rently are more than 300 clin­i­cal trials ongoing around the world that are investigating treat­ments for multiple myeloma and looking for patient par­tic­i­pants. Most of these trials are exploring new myeloma ther­a­pies that have not yet been approved for use outside of clin­i­cal trials, and many of these “investigational” ther­a­pies, as they often are called, have the poten­tial to be extremely effective.






Thursday, August 29, 2019

What an Insane Roller Coaster Life This Is

Hello 8.29.19

I cannot believe it's the end of August, and I almost forgot to post today, which is so unlike me . I also can't believe how time has slipped by so fast and I never updated my past post... but yet again,, if I had shared everything that has gone on before and since my last post... you'd get why I wasn't able to finish that post, or even write my update now.

And even trying to do this now, I have a blazing headache, and I'm more exhausted than I've been in forever, still slightly nauseated from Monday's Dex, Velcade, Cytoxan, and I still have to postpone a detailed update because I'm so exhausted from all the fast track insanity that's gone on in my life in the last month!


Well that quote is not entirely true, lol, but close. Actually, I'm too actively involved in my life, because so much is going on! There are times I just need to stop and "just be a cancer patient", but my life doesn't give me that chance!

So here's the headlines of what I wanted to write about, and may eventually be able to!

1- Earlier this month, I actually took the risk and flew to Hawaii for my son's surprise Engagement. What convinced me to go, was his heartfelt comment... "Mom, you're the "only" parent "left"...
2- I don't fly because of my terribly compromised immune system, so this was a HUGE RISK FOR ME
3- This was an Epic Surprise for his girlfriend/fiancee as both her parents have passed..., truly a once in a lifetime event to do this... so I mustered my fears and cautions and went... and so far... knock on wood as they say,... I'm still ok. Don't feel great, but I don't think I'm sick. Just exhausted and "chemo crash sick"
4- Prior to that, and I really hadn't shared with anyone, local, personal, or public... we moved my husband to a Memory Care facility
5- I picked "The Best", 5 star place for him, we moved him in mid July, and it's been the craziest adventure ever since
6- I visited him almost every day, except on my worst chemo crash days
7- Visiting him every day sure gave me a deep insight into those suffering, and I mean SUFFERING from Alzheimer's, Dementia, etc
6- I actually began to feel like a "resident" myself,... super weird, sad, awful, experience
7- Lived with "illness" on so many levels, every day
8- Really felt the difference between what it means to BATTLE Cancer vs SUFFER from a Brain Disease
9- As I've mentioned before, as awful as Cancer is, I'll take it over a Brain Disease
10- Moved my husband OUT of this Memory Care place this past Friday night
11- Hired caregivers at home for 7 days, 12 hour shifts
12- I'm so beat up mentally and physically, I can't even begin to describe all the detail...
13- But as always, I remain so very grateful on so many levels...
14- Soon I will catch up, and really share all this insanity with all of you... if you want to hear the full stories...










Monday, August 19, 2019

I Don't Fly, But I Did!

Hello 8.19.19

I have a BIG story for you :))

Trying to keep the Cooties away
So far it worked, but today I am waning and exhausted,
and even 40mg steroids aren't even revving me up

BIG STORY COMING LATER,
BUT FIRST
OFF TO GET MY VELCADE SHOT...


Thank you for checking in, and continuing to care about my crazy Myeloma journey!



Friday, August 9, 2019

Good News Myeloma Labs!

8.9.19
Hello August!

Had my monthly Dr appointment today via phone. I've done this several times now, and it sure beats fighting crazy traffic on the ridiculous LA freeways! I'm happy to report this means good news for my Myeloma status, which I am incredulous about, especially with all the stress, lack of sleep, extreme emotions, etc, related to my husband's medical decline...

My Dr released my labs online, and I will post all my important Myeloma labs tomorrow... but I'm moving slooooow like my Tortoise :))

Our Mr Tortoise enjoying Romaine lettuce-
All the doggies try to steal his meals.
It's crazy how they love this lettuce now,
Probably because they think he's getting
a treat, they're not!! 

THANK YOU 40mg Dex Steroids
Velcade shots
800mg Cytoxan, Cyclophosphamide

Hello Velcade shot
every Monday to infinity!
WHAT?? Normal range ^ 
Must be a mistake ;))


IGA still High,
others still Low,
but wow, this is the Best in a LONG time!


Low, and that's ok!


My Dr said...
NO M Protein showing!
Wow, unbelievable! :))


Wow!

Beta Glob a bit High,
but that's ok

Always Immune Compromised
But that's the price I pay for all this
crazy treatment, that, thank goodness
is working!!

Kidneys are still ok!
Amazing, with all these powerful meds,
and amount of myeloma circulating around for almost
10 years!!!


Not too bad...


Not too bad...

So Friends... that's my status, and I am so very grateful. Yes I "pay the price" with all my side effects, but I'm only "sick" from mid to late Tuesday, thru Wednesday, into Thursday, then finally start to be ok Friday, and better on Saturday and Sunday, then all begins again on Monday. But I get the "cleanse" everyone "pays for" LOL LOL.

My shirt says:
"If Not Now...
When" :))


Thank you for checking in, and caring about my story as you do. Hoping you are doing well, and your summer is humming along with minimal drama, good health, and happiness!




Monday, July 29, 2019

How Things Change in 9 Years

Hello 7.29.19

Wow, end of July.
July 2019.

10 years ago I was super sick, and didn't know it. Well I "knew" something was up, but I didn't REALLY KNOW! It's amazing how much has changed in 10 years. I'm processing it more than ever now... so much illness for me and my hubby...

9 years ago yesterday, July 28, 2010 I was released from City of Hope hospital from a 27 day stay for my autologous stem cell transplant. I was ok in the beginning, then so so so sick, then FINALLY better enough to be released, but so weak, so sick, so challenged physically and mentally. All my posts from back then, are here, if you haven't clicked the link from my previous posts: https://juliesmyelomamoments.blogspot.com/2010/07/
Ah, this life... we never know what's around the corner. We never know how wonderful and awful our lives will become, until it becomes our life...


But I am always GRATEFUL for so much, amidst the horribleness, tragedy, and lost life...

2007

The other night,
beautiful warm night

We think we have all the time in the world,
Then we don't... 

July 2019

Just too much happening, too much emotion, too much sadness, too much processing of Life, on so many levels. But one day at a time, one hoof in front of the other daily...

Onwards I march...
10 Dex Steroids pills this morning at 7am.
Velcade shot this afternoon,
Cytoxan capsules (8 x 50mg each) later with dinner.
So amazing what my body can handle...
CBC and organ status labs are holding their own. Always sooooo shocking to me! Myeloma status labs in a week...

Thank you for checking in and caring about my crazy life journey. Hoping your summer is going well, your treatments successful, and you are staying cool this HOTTTTT summer!

And click here for a fun summer cool off video, wild horses swimming in the surf!
https://abcnews.go.com/US/video/ponies-hit-beach-amid-east-coast-heat-wave-64542348







Friday, July 19, 2019

Just Keep on Going

Hello 7.19.19


A lot going on with my hubby's medical situation... :((

Here's my life 9 years ago this week, as I was trying to survive my autologous stem cell transplant at City of Hope Hospital. Wow, 9 years ago... quite proud of that number! I was a sick puppy this time 9 years ago, but on the way to recovery...

https://juliesmyelomamoments.blogspot.com/2010/07/
So interesting to look back on what I went through and how I wrote about it then. Be sure to scroll thru all the July posts to read my SCT process.

Thank you for checking in and following my crazy story... it never stops being "crazy" and challenging, and amazing in too many ways, bad and good...


Tuesday, July 9, 2019

I Love Chemo that Myeloma Hates

7.9.19
Hellllloooooo July!
And to think where I was, and what I was enduring... 9 years ago this entire month...


But back to my future...


I'm feeling so lucky... so surprised this current weekly cocktail of 40mg Dex Steroids, 1 Velcade subQ injection, and 800mg of Cytoxan, Cyclophosphamide (8 pills @ 50mg each) is still pummeling my "aggressive, high risk" IGA myeloma. I read and hear about so many suffering, so many where treatments are not working, or work then fail quickly, or the side effects are just too much too tolerate. But then there are those that do tolerate the meds just fine, with minimal side effects. Crazy how myeloma morphs and mutates and transforms so differently for all of us. As I write this, my mouth tastes like dirty metal, my stomach hurts, my head hurts, my skin aches, I feel swollen, my eyes are blurry, neuropathy numbs my extremities, and the fatigue is exhausting, but I am ever so grateful to still be here to take these powerful fighting meds that are keeping me alive, one day at time, one month at a time.

My monthly Dr appointment was originally for this past Monday, but my Dr had a change in her schedule, so I was rescheduled for today, Wednesday. I pull myself together, "fake til I make it", to get there today. Otherwise I would not be leaving the house.... I requested to maintain my regular Monday chemo schedule tho, as I didn't want to change my to Wednesdays. "If it ain't broke, don't fix it or change it", right! So I slammed down my triplet cocktail on Monday, but why I feel so lousy today :((


But in all of this insanity, 9 and a half years of treatment insanity, and who knows how many years prior of actual myeloma invasion, I'm here to still tell my story, and live my life in a limited, but still pretty awesome way.... well to a degree... sometimes...

So take a look at my crazy lab results. Still quite Abnormal, but I'll take it, compared to previous labs where I was 5x, 10x times the High End of Normal!!!!


IGA really low for me!
Good low!!! Myeloma is pummeled low!


Silly graph doesn't show IGA of 2000
back in Nov 2018
And it was really really high, above 3500,
back in late Nov 2016!!

Additionally, my M Protein is down to (point) .59!! 
Zero is Normal, so I'm still Abnormal, but that's the lowest it's been for a while.

And look at this!
Beta2 is holding steady at the
High End of Normal! 

Can you believe all the chemicals I take, and actually tolerate. Insane! But it's working for me. The body is such an amazing machine. And in all of this, all my Vital Organ stats are ok! Immune system is stressed and super compromised, but I'm so used to being "bubble girl", I rarely get sick. 

My WBC is 2.2, RBC is 3.65, ANC is 1.66. These low levels account for my continual fatigue and immune compromised status. I'm super careful and OCD regarding human contact cooties, germs, and cross contamination. So far my "air hugs" and back off, stay away from me lifestyle works :)) 



Hoping you're well, staying strong, fighting your fight, and enjoying what gives you joy!
Thank you for checking in and caring about my myeloma journey. I still feel I am telling someone else's story... how can this be my life... along with my husband's sad Alzheimer's decline... how did we both wind up with incurable, life altering, life disabling illnesses, that stole our lives individually and as a couple... so cruel... so mind bending... yet trust me... I ALWAYS COUNT OUR BLESSINGS and good times...



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.