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

Monday, December 30, 2019

I Made It... 10 YEARS Ago Today I Was Diagnosed with Myeloma!

Hello 12.30.2019
Bye Bye 12.29.2019

Yes, Bye Bye to posting on the 9's
Hello to posting on the 10's

Yep, this girl made it to 10 years since my Myeloma diagnosis. Very surreal, still not able to fully absorb all this cancer nonsense, but it's my life.

Yesterday was December 29, 2019, the last 9 of this year, and of this decade! Wow! How did that happen :))

I wasn't feeling up to posting a post, as I've had a lousy head, chest cold for over a week. And as my bugs go, they start with a headache, which I often can't differentiate from chemo side effects. Then the headache morphs into a sore throat. And from that, I know I'm a sickie. The sore throat then morphs into a bit of sneezing, and that morphs into my chest, with all the lovely coughing and hacking. Fortunately, it didn't go deep, and I never had a fever. But the worst part for me is as a result of the muscular action of blowing and coughing, I pull chest and rib and shoulder and back muscles, often spraining or fracturing something along the way. If you've been reading my blog for years, you'll remember my posts around this time of year, with awful muscle, nerve, bone pain. So here we go again, same story, different year.

As always, I never expect to have the things happen to me that they do, as they do, so I didn't think I'd be suffering this long. Had this thing for almost 2 weeks now. The headcold part isn't the worst, it's the disabling muscular, nerve, bone pain, and non stop headache. So for the last several days, I'm eating Tylenol and Advil like candy, along with hugging a heating pad, along with taking a muscle relaxant at night. What a way to ring in my 10 year diagnosis, survival anniversary and 2020! I still want to do a BIG party for my 60th birthday and 10yr cancerversary... I'll let you know when that can happen. Everyone will be invited!


And that's not the entire ridiculous story of our life this month.
I'll just highlight, as it's too tedious to tell, and you're probably tired of all my downer, negative stories.
Jim's situation continues to be so challenging. The mood swings and physical challenges he goes thru everyday are just exhausting, painful and completely draining. Alzheimers and Dementia are just so awful.

I continue to be everything to everyone. Having to navigate all that is required to keep our lives and household afloat, all the while doing chemo and related side effects. Yes, I have lots of help, but it all still comes down to me having to micromanage everything. Just visualize all you do to make your life and household work... I'm in charge of it all, not by choice, just what it is. I lost my "do it all" guy.

Had to have a big part our roof repaired, redone due to rain leaks from last year.
Had electrical work done for faulty wiring... could have caused a fire in part of the house.
Jim has fallen several times this month, necessitating the need for others to come and assist.
Classic Alz mood swings are happening more often, you can read here for Alz details, just awful...
My vehicle battery died when I went to pick up a Wal Mart Grocery order one evening at the start of all this cold weather. Had to replace that.
Christmas Eve, after Jim's falling incident, the carbon monoxide alarms began screeching at 1:00am
Due to the holiday, had to wait for hours and hours for the Gas Co tech to come.
Had to have all the Gas appliances off, till he arrived at 5am... after calling in around 1:30am...
Yes, up all that time, with windows opened, no heat in the house.
Gas Co tech discovered something crazy in our main house water heater. It was emitting "aldehyde", a byproduct of natural gas not being vented, burned off properly.
As a result, no hot water for a few days, as this happened on Christmas Eve, Christmas Day.
Replaced 2 water heaters, as the other one was very old, and leaking.
The "aldehyde" created Soot in the pipes. So crazy. Have you heard of this? Ever experienced it?
Yes we could have "died" from the fumes emitted. Thankfully daughter Alissa was here to help, and encourage me to call the Gas Co. I just wanted to smash the alarm and ignore everything going on.
And more falls, more mood swings with Jim.

Then to top it all off, all my horrible tweeked muscles, nerves, bone pain from all my coughing reared it ugly self... The pain is just horrible and temporarily disabling, along with this mysterious non stop headache...

On top of everything else, and this may seem small to most, our horse hay was delivered was wrong. See as the horses get older, I transition from all Grass hay to part Alfalfa hay for the cold winter nights. I have the grass hay and alfalfa stacked in 2 separate rows. Well the delivery guy stacked the alfalfa in the back and grass in front, so we're not able to access the alfalfa. Big deal you may think. Yes, just one more thing to deal with, with the possibility of medical issues with the horses.
Alfalfa hay is very rich, like us eating pasta, steak and cheesecake all the time. Horses have the chance of "Foundering" from it. Also known as Laminitis or "Cushing's" disease. Our mini pony has this, and therefore must not have free access to Alfalfa hay. Anyway, the routine is messed up, and I'm too sick to deal with it, so let's hope for the best, and our horses don't get sick....


And on top of the top of all this... I received news my Myeloma numbers are climbing again. I only "cheated" on the Dex steroids 2 times, where I took 20mg vs the usual 40mg, and boom up go my numbers.
My IGA went up 200 points to 899, M Protein up to .81.
Normal for IGA is 70-400
Normal for M Protein is zero

And there's so much more, so many more things that have happened, irritants, disappointments and minute by minute challenges. So many challenges, so much to think about, I've just let it go... I had a meltdown in the barn on Dex steroid crash day, the other day... I cry and laugh. Cry and laugh. Cry and laugh. Then get up and get going, and push it all away. Alissa happened to come out, and I felt bad her seeing me that way. I used to process everything psychologically, and encourage others to do the same. Now, I STUFF more stuff than I ever have my entire life...

Well, this post was going to be a 10 year recount of strength and resilience, celebrating my 10 year survival over Myeloma. But I'm just too beat up to pretend it's all ok, and that I love life, and all is great and wonderful. That would be a lie and huge misrepresentation.

So cheers to surviving Myeloma for 10 years as of today! Yes, this time today, 10 years ago, I became a Cancer Patient. My previous posts recount my perspective over the years. Hopefully I'll be full of hope and gratitude my first post of 2020!


Happy New Year to all, and I do sincerely hope you have wonderful holiday celebration with your loved ones, and cheers to health and happiness for all of us, right!



Here's to 9 years of myeloma diagnosis posts:

2018
https://juliesmyelomamoments.blogspot.com/2018/12/9-years-ago-today-i-learned-myeloma.html

2017 https://juliesmyelomamoments.blogspot.com/2017/12/happy-new-year-you-have-myeloma.html

2016
https://juliesmyelomamoments.blogspot.com/2016/12/7-year-myeloma-diagnosis-anniversary.html 

2015
https://juliesmyelomamoments.blogspot.com/2015/12/6-years-ago-today-and-im-still-here-to.html

2014
https://juliesmyelomamoments.blogspot.com/2014/12/5-years-ago-today-boom-mm-forever.html

2013
https://juliesmyelomamoments.blogspot.com/2013/12/

2012
https://juliesmyelomamoments.blogspot.com/2012/12/

2011
https://juliesmyelomamoments.blogspot.com/2011/12/

2010
https://juliesmyelomamoments.blogspot.com/2010/12/

And onto 2020 with my posts on the 10s!






Thursday, December 19, 2019

Waiting for Results... Full Denial 10 years ago..

12.19.19

10 years ago yesterday, 12.18.09, I had my first Bone Marrow Biopsy.

The physical pain was excruciating, but it was the psychological effect that was even deeper. I was suddenly participating in a medical world that I couldn't relate to, or wrap my head around. Being sick, seriously sick that is, was just not part of "my plan" or "who I was". 

I was on a ride I couldn't believe I was on. I was thrown onto a roller coaster I couldn't comprehend, nor accept. I heard new medical words and terms that I had never heard before. I followed my Dr's lab test assignments as if I was doing it for someone else. Everything became an out of body experience. I was robotic about so much. My life at that time was a combination of normalcy, disbelief, not feeling well, denial, yet still a sense of nothing had really changed. I began to read things online, but "cancer" truly didn't enter my thoughts, and no one had yet said that word...

Yet...

My next "Hematology" (still "Hema-whhaattt?"), appointment was scheduled for Dec 30, 2009. The day that changed my life forever... that changed everything about me forever. But I didn't know it at this time, 10 years ago...

Holidays, fun, friends and family was the plan in the meantime. My Dr had put me on Iron pills for my extreme Anemia, and some other meds too, I can't recall now, and ordered more Labs for after Christmas. And more Labs. Every time my Labs came back, she ordered more. I wasn't able to see the Abnormal ones online....

Life moved forward fairly normally. I went about all the things we did around holidays. Busy busy, party party. Yes, I still had all my symptoms, but I never ever thought about me having a serious diagnosis...

10 years ago I was "dying" from cancer that was eating me up alive, and I had no clue...

What my Bone Marrow Biopsy revealed on 12.30.2009 was shocking!!!

I'm still in shock...

Back in the day when we were healthy... 
this was maybe 2003!



Saturday, December 14, 2019

December 14, 2009... And So IT Begins...

December 14, 2019

10 years ago today...
Yes 10 years ago December 14, was my very first Hematology Oncology appointment at Kaiser.

After extensive, surprise, extra detailed blood tests, beyond the "normal, regular" labs done for "routine annual physicals", I was referred to Hematology... Hema... what, I questioned??? They must have mixed up my labs with some sickie with a similar ID number...
Oh yes, I was the sickie, but I didn't know it...

I'm pretty sure my GP doctor knew what was up, as he was super Urgent with my Hematology referral, which I delayed from November to December, thinking, ya ya, I'm ok, nothing wrong with Super Woman Julie... just super fatigued, just bleeding out a lot, in several places daily, just breathless, just achy, just so tried I could hardly function, just lots of weird headaches, dizziness, bone aches, so thirsty all the time, always getting sick from all the college cooties... ya ya, nothing wrong with me... I'll just drink more Red juices to bump up my blood strength, and maybe eat a steak or 2 more often. Nothing wrong with me, but what the heck, I'll go to this appointment in Hema-whaaaateeevvvverrrr.....


When I checked in, I even said to the super nice check in girl... "I'm sure I'm in the wrong Dept", and "I'm sure this is a mistake", "I'm sure I don't belong in this Dept"... and "how weird, Oncology is in this Dept too". "Oncology... hmmmm... isn't that Cccccccancer related"... Yep, I'm for sure in the WRONG Dept....

I checked in.
I waited for my appointment.
I met a new lovely doctor.
Who talked to me about my labs, asked me how I was feeling. Took a lot of time asking me about symptoms, which of course I down-played.

She sent me for more labs that day.
Then scheduled me for more appointments with her.
Then sent me for more labs after those labs... "Stat"... what's Stat?
Then called me one day, and I actually answered my cell...
She said certain labs showed I was very sick. I should be hospitalized. I need "blood products"... huh??? Me? No, must be a mistake. Jim is upset I'm not taking all this seriously. I refused hospitalization. I refused blood products. I'll just drink more Red juices. Eat more steak. Wow this is fun, I can eat and drink what I want, and still Lose Weight!!! I'm fine....

More Labs, more phone calls. More symptoms. More ignoring it all. I was just fine. Bleed on!

End of the semester stress. Student Finals. Stress. Lots of desperate students. Stress. Holidays coming. Stress. New Years coming. Lots going on. Stress. I'm not going to the hospital. That's for sick people. I'm not sick. I just have some weird symptoms. Maybe just end of the year stress. I'll just drink more Cranberry Juice and eat more Steak...

And then I was scheduled for a Bone Marrow Biopsy... a What??? I think Scott Googled it and said, "Wow Mom, that's a really painful procedure"... I don't remember if I Googled it... My first BMB was scheduled for December 18, 2009....

Nov 22, 2009
Whoo Hoo 50!!
I didn't feel well here. 
Never did eat my cake :((

Nov 22, 2019
Whoo Hoo 60!!
Wow, Myeloma hasn't won yet
10 years post diagnois!
Still so surreal...
This can't be MY Life.... 

And so the journey began.
But I didn't know what journey.
For the first time, I cried a lot, on Dec 18, 2009, during my first Bone Marrow Biopsy. Shaking, sobbing, crying.. reality hitting type crying...
I knew then I was seriously sick. I just didn't know how sick, and with what...

The story continues 12.19.2019

Thank you for reading, caring and being interested in my life story. 
Stay well. Stay happy. Create the best life you can, with whatever your circumstances are. I'm trying every day. Trying to stay positive and optimistic, under our dark cloud of Myeloma and Alzheimer's...



Monday, December 9, 2019

The December Countdown to 10th Dx Anniversary Begins!

Hello December!
Hello 12.9.19
Hello to The Big Countdown to my 10th Myeloma Diagnois Anniversary!


Most are counting down to Christmas and New Years.
I'm counting down to December 30, my Life Changing 10th anniversary of hearing the word Myeloma. Learning I had 70% Myeloma eating me up alive.

December 30, 2009 forever and ever changed my life...

10 years surviving vicious cancer!
Would have never thought I'd make to my 60th birthday.
Never would have thought I'd beat Myeloma for 10 years.
Never would have thought my body could process all the medical chemicals I put into my body to stay alive.
Yes I think about this daily
Yes I think about being a myeloma cancer patient daily
Yes my thoughts are consumed with my status
Yes medical stuff and illness overshadows EVERYTHING in my life
Yes I'm grateful
Yes I'm pissed
Yes I'm happy some days
Yes I'm angry some days
Yes I am medical miracle
Yes I am beat up, exhausted, fatigued, burnt out, sad, mad and overwhelmed
Yes I am. I am. I am still here and super proud of it.

November birthday girl!

Took 20mg Dex Steroids this morning, instead of the prescribed 40mg. Just want to see if I feel any different today, or if it affects how I process my treatment today, and also want to see if I can beat up Myeloma at a lower steroid dose. Been on 40mg for longer than I remember now... How can my body still be ok on this powerful stuff for 10 years!! 

Off to Velcade soon, be back to upload what I wrote the other day...
Edit or not edit? Post it or not post it?

Did you see my amazing Snow pictures on my last post? So lucky to have made that snow drive. Rarely get out. Was such a treat. So few "good days"...

Julie the "dog whisperer" :))


Hope your day, and holiday festivities are happy and healthy. Stay away from all the cooties my myeloma friends! It's "germ warfare" out there :((

Thank you for reading and caring as you do!

In the meantime, check out these great treatment articles from the Myeloma Crowd!
https://www.myelomacrowd.org/myeloma-news/




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.