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

Thursday, June 25, 2015

Hello again Neupogen shots... C'mon Immune system, Let's Do This!

Seconds left on this 25th of June! Meant to post sooner as I sure don't want to disappoint my "On The 5's" fans, and my commitment to posting on the 5's. I started this post days ago, but "fortunately" life got in the way and I never finished posting my details. Check back for my updates, revisions and additions.

Yay! My GI system "let" me go out to eat tonight.
Seriously, can you believe the number we got!
Oh no, now gotta "go"...
Dang you stupid compromised immune system and GI reactions :(
That event was short lived... and so are all my other eating adventures

My current stats and why I feel so yucky:

WBCs = 2.3 yikes! (4 - 11 normal range)
IgA= 1630 yikes!   (70 - 400 normal range)
M-Protein= 1.42 yikes! (zero = no cancer)
ANC = 1.0 yikes!  (1.8 - 7.7 normal range)

Me = Neutropenic = Neupogen shots this past weekend- not sure if it made much difference. I'd probably need a week's worth to make a dent.

Good bye Rev 15mg for 2 wks on, 2 wks off. That experimental regimen was short lived.
Hello back to Rev 15mg alternating with 10mg, 3 wks on, 1 wk off
Looks like full on Rev 15mg just compromises my already compromised immune system too much. Such a chemo light-weight I am. And such a "catch 22". I need the higher chemo doses to knock down myeloma, yet the higher doses knock down my immune system, not the cancer.

Ugh... awful GI side effects, thank you Rev and IgA myeloma
Ugh... killer fatigue- I never knew how exhausting being exhausted can be
Ugh... limited limited limited life... booooooo
Ugh... "cheating" on weekly Dex, vs having a life, vs yucky crash side effects of Dex, vs impact on cancer's advance, vs just take it Julie, suffer, live in the bathroom and have no life?

June 19 appointment summary:
I really should add another chemo to the cocktail soon.... I know, I know....but scared, scared

Ugh, Side effects, vs life, vs work, vs fun, vs bucket list, vs homebound, vs what to do!!!

Myeloma, you're such an invisible cancer... "but you look so good... your hair... wow!"... blah, blah, blah, thank you, but my appearance is so deceiving!
Myeloma, you stole my life. You steal my fun. You limit me. I don't like limits. I don't like you at all Myeloma. Just go away, far far away!

Some insightful, thought provoking conversations recently about other's life choices... I will summarize soon...

And do you know what I was doing exactly 5 years ago this June... wow! So interesting perusing my past posts. Can't believe I've been writing, sharing my thoughts like this for 5 years now!
Yep, my 5 year SCT anniversary is coming up July 5 !

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

Wednesday, June 10, 2015

Up Up and Away

Yikes... my medication "cheating" from last month caught up with me.

I just keep thinking that my myeloma numbers will magically change for the better and my medications will suddenly kick in and totally eliminate myeloma's power over me. Seriously, this must all be a bad dream (make that a nightmare)! As much as I have always (tried to be) a total realist, I shake my head in disbelief that my "perceived" reality is not real reality.

What am I trying to say here... I (stupidly) thought that taking only 1/2 my weekly dose of Dexamethasone and even missing, (smugly deciding not to take), several doses of Dex in May, wouldn't be a big deal at all. I stupidly thought, eehh, I'll be just fine, it won't make a difference, I'm Julie and I'm not supposed to have cancer, so whatever, it won't matter if I don't follow what I'm supposed to do. And besides.... I'M JUST SO DARN SICK OF FEELING SICK, SO TIRED OF BEING TIRED, AND SO OVER HAVING CANCER, (hhmmm... haven't I written that multiple times before!), that I just don't want to take these GI crazy making meds, so take that myeloma, I won't take my meds! DUMB!!!

Here I am, living in my fantasyland of unicorns and magical thinking

So I'll confess... I'm still in denial about having incurable cancer. It must be a mistake. Even though feeling yucky most of the time is my constant reminder, I still can't believe I have cancer and I have to take all these crazy chemo meds forever and ever and ever until lights out. I still think, oh it really won't matter if I cheat on my med schedule occasionally, because it will just magically be ok, because I really don't have cancer. And honestly, I still can't believe 5 years of treatments, including a stem cell transplant, hasn't "fixed me up", and made me "normal" again. I know... dream world...

This probably makes no sense at all, because it really doesn't make any sense at all, because me having cancer makes no sense at all...

So anyway.... this is what happened:

I was supposed to see my COH/SCT/transplant, hematologist oncologist this past Monday, but because I had so much frikn GI lava, I didn't dare get on the freeway to go downtown. Even a dose or 2 of my friend Imodium wasn't calming the raging lava. So I emailed my Dr (and kinda confessed about my cheating) and asked him to let me know the results of my recent labs. Ha! be careful what you ask for, right?!
The results actually shocked me. And good they did, cuz that was just the wake up call I needed.

M-protein up from .88 to 1.13
IgA up from 1320 to 1570
WBCs still in the middle 2's

So I'm an idiot. I got my slap around, wake up call. I have cancer. I have to take all these meds. My situation is only getting worse. I'll probably have to add to my chemo cocktail and that scares me a lot!

And these results are not even reflective of my new test cycle of 2 weeks of 15mg Rev only (no more alternating 10mg), with 2 weeks off. I see my local hematologist/oncologist on the 19th, and I'll take my labs about 5 days prior... so we'll see. But ok, I've learned. There's something about Dexamethasone that punches myeloma in the cellular gut. As much as I absolutely hate the crash, I do enjoy the short buzzing serenity Dex gives me for about 24 hrs. Time to focus on that, and just accept my relationship with "Porcelain John".

So why did I cheat in May? There were a lot of things going on. A lot of events I was supposed to attend. C'mon cancer, you're gettin in the way of my life! Trying to work, live life, be there for others, enjoy family and friends, and trying participate in activities without having to worry about surprise volcanic eruptions. That's why I cheated a bit. But you know what... I still felt sick. I still had to starve myself if I left the house. I still had a lot of shocking GI reactions. So I learned. Shut up and take my meds.

Here's what I did on a few of the days I cheated: 

Celebrated Claudia
at her beautiful memorial service 

Hung out with these Gems

Pretended to be normal at a Battle of the Bands car show

 Played in the dirt a bit

And breathed in my favorite scents

Attended my 30th commencement ceremony
celebrating students, with wonderful colleagues

 And when I couldn't leave the house,
I watched a lot of TV with my daughter and hubby
between never ending visits with "Porcelain John"

Ugh, such a small fraction of what I used to do stupid cancer...

And I am... 
And I do...
But I just can't
accept that I have cancer

Why June 10, 2015?  5+5=10 :)

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.