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

Monday, October 28, 2013

Deja Vu 2010 - RoidRage Rerun and other Treatment Plans

Hello again my Myeloma munching Dexamethasone... you are coming back into my life...
Paired with your friends Revlimid? Velcade? Cytoxan? and all those other cancer chomping chemos...
Ugghh... here we go again...

Hey body that has failed me ---> I'm not looking forward to feeling yucky again!
I played being well for about 9 or so months while in remission and chemo free, until reality hit me again too soon.
Everyone says I am soo strong for handling this crazy cancer situation as I have
Honesty, I really am not that brave... 
I just do what I have to do, to gain additional years on my ever so shortened clock!

And so I am sick AGAIN!!!
Have had the delightful intestinal virus (lower GI) with a fever over 102 for days
Been off work for a week slowly recovering my strength, trying to reintroduce food, but we are not best friends right now (not that we ever were anyway)!

I was really sick in August too
Now really sick again in October
Can't I get a break??
Body betrayal status here!

I feel I am going downhill fast... and not on a horse or in my cute VW bug... but downhill on the cancer is winning again slide...
Just not fair to just SEE my horses out my window, although they're happy just hanging out... and I think about my cute lil Bug in the driveway, just sitting there... such ironic torture I can't go out and play as I seem to be always too weak or too tired to do much of anything anymore.
Yes I know... I am very blessed to even have them in my yard to be able to see!!!
Not to worry, I am very grateful for everything in my life (minus cancer!), I'm just a little pissed off right now and little beyond frustrated!!! ggggrrrrrr

And so, I've had to postpone taking my new crazy Dex steroids as the first leg of my Deja Vu pommel myeloma back into remission treatment plan... that's ok, I wasn't looking forward to that anyway!
But I will behave, and begin the cycle in a week when my body is stronger.

Uugghhh, can't a girl get a break!
What is all this really about?
I just don't get it!!!!!!!!!!!

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

Thursday, October 10, 2013

Brief BabyBlue Bucket List Bug Blog update

Miss Baby Blue arrives a day earlier than expected!!!
Just after sunset on Sunday
all the way from sunny Florida!!

She sputters, spews smoke
sputters again, spews more smoke, stalls out
 and I'm just way tooooo excited to
even remember how to shift!
Whew! son Scott gets us home safely :)

And the next day...
Bucket List Baby Blue Bug and I 
meet and greet in the neighborhood!!!

18 and ANCIENT
all at the same time!!!

And perhaps Miss BabyBlue replica inadvertently has helped me solve the
"Why did I get Myeloma" riddle:

Driving a VW Bug as a young adult and Breathing in all those Exhaust fumes... contributed to my body's immune system mutation!!!

Do you recall the connection between Myeloma and Petroleum?
I just did...
(Google it!)
Perhaps this wasn't the best Bucket List idea after all?!

HA! Sorry Myeloma, you're not going to spoil my fun!
Miss BabyBlue is going to the "Doctor" herself for some much needed "treatments and medications" ! Here's our internal parallels:

New gas = new blood
New oil = cleansing chemo 
New parts = a stem cell transplant
Looking under the hood diagnosis = bone marrow biopsies and skeletal scans
Continued maintenance for her system = continued maintenance chemo for my system
Ahahahhaaa too funny!!!

 And speaking of FUNNY
here's Jim trying to figure out 
how to take a picture on my new phone!
Did I mention the color of the cover Scott chose for me?
You guessed it!
Baby Blue!!!

Next blog =
October blood test results and
Treatment plan decisions

SINCERE THANK YOU FOR YOUR CONTINUED INTEREST IN MY MUSINGS AND MYELOMA STATUS.  I wish this blog had the "Like" button as Facebook does, so all of you would know how much I "like", make that love, all your comments on each of my blog entries!!! Thank you so much for caring!!!

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

Friday, October 4, 2013

Biopsy results and a Bucket List Baby Blue Bug!

B is for Beware
Because this Blog is Bubbling over in silly B-Babble :)
B is also for Blood cancer Biopsy results Below

B is for a cute Bucket list Buy I spied
B is for my new 1974 Baby Blue Bug
B is for this Blast to the past Beetle I Bought in a flash

B is for this Bug Being Brought to me 
Blasting from West Palm Beach to me
B is for Bursting with nostalgic excitement

But C is for Cancer that's now suddenly Back
But this Bewitching Bug cheered and distracted me, as
Bummer Biopsy news confirmed
Boo-hoo, Blasted cancer is Back

Here's my Baby Blue Bug getting ready to leave

My new Beetle Buddies (L to R)
Ty and Randall 
Who have been so fun and helpful
with this special Bucket List Bug!

Here's she is loaded up and ready
for her trek from Florida to California
Stay safe Baby Blue
until we meet for the first time next week!

~ ~ ~ ~ ~ ~ ~ 
Ok, time to switch "gears" (sorry, couldn't help myself)
 to the main reason you came to read this blog:


Below are my medical numerical details, which summarize my blood work and biopsy stats from diagnosis Dec 2009, to my current Aug/Sept 2013 Out of Remission stats. So dang it, after all my 2010 chemo, powerful crazymaking steroids, July 2010 high dose chemo, autologous stem cell harvest and transplant, and year and half maintenance chemo, all which gave me remission!!! ... Myeloma decided to escalate and end my remission party :(

I've had 4 delightful, make that awfully painful, Bone Marrow Biopsies since late 2009, which show the level of Myeloma cancer in my blood plasma: 

Biopsy #1: Dec 2009 = 67% cancer, at shocking diagnosis
Biopsy #2: June 2010 = 10% cancer, after 6 months intensive Revlimid, Dex Steroids, Cytoxan chemo
Biopsy #3: Aug 2010 =  0% cancer, after hospitalization, high dose Melphalan chemo and auto stem cell transplant
Biopsy #4: Sept 2013 = 15% cancer, after being off maintenance Revlimid chemo for only a year :(

I am IGA Myeloma,  so one of the important Myeloma cancer markers is my Immunoglobulins: 

Normal range (measured by Kaiser/City of Hope) blood tests = 70 - 400mg/dL
Dec 2009 = 5600+mg/dL (wow! I was sure a sickie, and didn't know it!)
Aug 2010 - Oct 2012 = very low, sub normal #s as my immune systems battles back after transplant
Dec 2012 - Apr 2013 = FINALLY in the NORMAL range!!! (but sure short-lived!)
June 2013 = spiked out of normal range, but no panic yet
Aug 2013  =  spiked more, officially determined to be out of remission
Sept 2013 = edging close to 1400, which is over 3 times the high end of normal

Another important Myeloma marker is the M-protein, or M-spike via Protein Electrophoresis:

Diagnosis: Dec 2009 = 4.30gm/dL
During remission: Aug 2010 - early 2013, not detected at all!!
Official M-spike comes back: July 2013
Rising monthly: Sept 2013 = .96gm/dL

Such pretty cells for such a deadly cancer

 So what does all this mean?
1- I am not a happy cancer camper
2- I am so shocked Myeloma came back so soon
3- I am a very happy babyblue bug owner :)

4- I am very grateful to have had all the fantastic medical treatments I have had, that saved my life!!
5- I wrongly assumed I would have remission status for years and years and years and years and years and years... 
6- I am extremely grateful to still be here and have the amazing life I have, even though my energy and ability to be "me" is a fraction of what it used to be

7- I will be back in treatment, back on chemo most likely this, or next month
8- I am still partially dominating Myeloma, as fortunately my Doctors never stopped monitoring me closely, and my Out of Remission status was identified FAST!
9- Even though the cancer has come roaring back, and much quicker than we anticipated, at least it was caught this time, in a still treatable stage!

10- I am grateful for so many and so much, that is still so good in my life
11- If you love me, don't share your germs and cooties with me! No hand-shaking, no kissing; "air hugs" only please! Myeloma is a cancer of the immune system, which means... duh... I'm "immune compromised", and can get sick easily, and haven't been well since mid-August
12- Looks like I will be in treatment for life, and on some sort of chemo forever
13- Lucky (unlucky) #13... just MY luck, Myeloma is an incurable cancer...
Myeloma looks like little monsters
coming to gobble me up!! LOL

And finally, you may be wondering, what is my "sudden" interest and excitement in an old 1974 VW Beetle?
It's a fun bucket list blast to my past, as my first car was a 1972 twin of this one. I always thought it would be super groovy to find a replica of my beloved baby blue bug, and so when I found out I was fully out of remission, and the cancer was back with a vengeance... that truly was a huge wake up call to me.
That "NOW" is of the essence, and I should no longer put things off..  my previously thinking= I still had all the time in the world!! Ha! My new motto: Think it... Do it... Now! Well... I'll try to...

Next blog, I'll post a picture of me with my BabyBlue, driving to chemo treatments!! ahaha.....

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

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.