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

Saturday, July 19, 2014

Stem Cell Transplant Reflections: 4 years ago today

July represents so many things to me now as I reflect back, 4 years post Autologous Stem Cell Transplant and mega doses of multiple types of chemos. I'm ALIVE 4 1/2 years since diagnosis of deadly Myeloma! I'm pretty amazed with, and proud of my successful medical journey.

My July anniversary brings so much to mind for me. I still marvel at what I have been through and endured, and all the treatments I have survived! It all still seems like an out of body experience, or like I was a participant someone else's movie. And it's still hard to fully comprehend I have incurable cancer...

Looking back, I have zero regrets about any of my treatment choices and I am forever grateful for all the amazing care I have received through Kaiser and City of Hope. Truly, my Doctors, Nurses and staff members saved my life! Even though Myeloma returned a year ago, and I have been back on chemo and steroids ever since, I am so much healthier than I was in 2009! Sure, I have daily physical challenges, but in the BIG picture of things, cancer doesn't stand a chance with me :)  I realize I will be on chemo and tackling some sort of treatment plan for the rest of my life, and I'm ok with that... as long as it's buying many more years of life for me!

Interesting to re-read my thoughts 4 years ago, July 19, 2010, midway through my hospitalization at City of Hope. I was struggling through the middle of my battle, both physically and psychologically. Being sick and isolated in a hospital room was indeed very challenging for me. I felt broken, and wondered if I would ever be "me" again:  http://juliesmyelomamoments.blogspot.com/2010/07/good-bye-juliehello-julie.html

But I recovered and successfully reached full Remission from all that I endured!
With the help of maintenance chemo for a year and a half post transplant, Remission lasted until Summer 2013.  I've been back on chemo since mid last year, and will be for the remainder of my life. But for what all this is, and what I have been saddled to battle, I am so grateful for the quality of life I still have!

So happy 4th Stem Cell Transplant Birthday Month to me! I'm still here Myeloma, and you're NOT winning!

July 2014 is VERY different than July 2010!!!

The other day I felt well enough to groom a few of my horses
Here's my beautiful once wild Mustang
"Sissy of the Siskiyous"
She's so beautiful, so sweet, so kind, 
and has never known anything but love and kindness

 And then....
Ugh! RedBear had several "Code Blue" Colics this month!
Thought we were going to lose him...

He's been diagnosed with ulcerative colic
and is now on Ulcer Gard which is a horse version
of what I take with my Dex steroids (Omeprazole)!
Can you believe that!

Fortunately he's doing much better 
and back to itching those itchy spots
with his "wifey" Sunny

So take that Myeloma!
I'm living life as fully as I can 
on the days I can!


Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!
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Saturday, July 5, 2014

4 Year Stem Cell Transplant Birthday Reflections

And so the journey of my Stem Cell Transplant to Remission began July 5, 2010

July 2=  Day 1- Hospital admission
July 3=  Day 2- Day 1 of High-dose Melphalan IV chemo begins
July 4=  Day 3- Day 2 of High-dose Melphalan IV chemo continues
July 5=  Day 4- My stem cells arrive, are infused via my Hickman catheter, and my one month journey to near death, recovery and eventual remission begins in full force
  
July 3, 2010- Melphalan chemo arrives
My nurse had to wear special protective gear
as Melphalan is so "hazardous"
wow, I am so puffed up from 6 months of high-dose
Dexamethasone steroids! ugh!

 "Happy" (not!) 4th of July to me
Actually all my nurses were the kindest, sweetest
most caring professionals ever! 
They did an awesome job taking care of us and 
cheering us up, and on

 The BMT/SCT transplant nurse team was required to
accompany their patients to the "penthouse" area of the hospital
to monitor our meds and IVs

We had a semblance of normalcy on 4th of July
with a glimpse of fireworks from afar...
So surreal! I felt like a participant in a movie
 Here I am
All hooked up to all kinds of meds
So unreal to me then
and still now

 Staff and patients alike were "shocked" that I still had hair.
In the beginning days, I still styled my hair, and put a little make up on.
That ceased as the days marched forward, and I became sicker,
neutropenic, and my Hickman line became infected and
had to be removed via emergency bed-side surgery
I was "delirious" by then...
just about a week and a half after these pictures

 Still being the silly optimist that 4th of July
only day 2 of my hospitalization
Thumbs up... all will be ok I naively thought
(Little did I know the death defying crash to come...)

July 5, 2010-  My Stem Cells arrive!!!
 About 11:00am, July 5, 2010 my "stemmies arrive
all protected, frozen but thawing, ready to be infused. 
My stem cells arrived by a special nurse from the apheresis lab

 Next, another specialized nurse setting up my IVs
monitoring me hourly, making sure all goes well

Jim and Alissa show up, just after my stem cell transplant
They either hit traffic, or my stemmies arrived early...
But they came, we laughed, we cried, we tried to be "normal" 

And I even walked them to the elevator...
which was one of my last ventures out of my room 
for a month...

After all the complications and crazy side effects, I was able to leave the hospital about 28 days after I was admitted. I cried and sobbed when I was wheeled out of my room, out of the hospital and into fresh air. I couldn't believe I was finally "free". Free to go home and try to recover my life. Truly I was grateful beyond words for all the TLC I received by every staff member at COH and Kaiser... but being confined in that room for a month nearly did me in. Honestly, there were moments where I thought I would never be released... 

As I breathed in the outside air, and briefly soaked up the blazing summer sun, I realized the Julie that walked into that hospital, was not the same Julie that was walking out...
I knew that I had battled a battle I never chose to battle, and I knew I battled deadly complications. But I also knew that I was RELEASED from from that hospital ALIVE, and I had a chance to stay alive. I was given another chance at life and living, and 4 years later here I STILL am!

Yes, Myeloma came back mid 2013, but my initial high-dose chemo treatments, my Autologous Stem Cell Transplant, along with 1.5 years maintenance chemo post transplant, gave this cowgirl additional years! I continue to battle forward now that myeloma has returned, and will battle as long as I am strong enough to do so. I have so much to live for, and so much life left within me. Yes my future scares me. Yes additional chemo scares me, but I keep on keeping on... downing my pills and meds daily! But I live today, focus on today, smile and laugh any chance I get, and I look forward to all my tomorrows!

Happy 4th "New Immune System" Birthday to me today!

Here we are way back in the day
1983/4
riding in the local 4th of July parade
I decorated us and the horses alike with red, white, blue accents
and we won the parade trophy for "Matched Pairs" !

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

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Wednesday, July 2, 2014

4 Years Ago Today...

July 2, 2010

Four years ago, I was admitted to City of Hope Hospital for my life-saving Autologous Stem Cell Transplant

Hello to "hermetically sealed" inpatient status
Good bye to freedom for a month
Ha Ha- my thumbs up status- I'm so naive!
Poor Jim looks like the scared patient to be,
Scott and Alissa, my clueless kids
looking just as pseudo-jolly and naive as me...

Up the elevator we went
Picked out a room with a view
Glove up, mask up
IV hooked up: life and death to be delivered through mainline tubes
Hugs, kisses, teary good-byes
I'm now alone in my sterile room... 
I don't know what's next... trying to stay strong... I begin to feel scared

My life-saving journey to death's doorstep begins...

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

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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.