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Saturday, January 16, 2016

Reality Check 16

Hello 1.16.16

So I was thinking about TIME the other day. Ha! I think about time all the time.

I think about how much time has passed in my life already.
I think about how I used to think I had "forever". (Didn't we all?!)
I think about the weird timing of so many things in my life. Crazy stuff!
I think about my perception of time before cancer entered my life and before Myeloma became one of my (unwanted) vocabulary words.
I think about the term "Quality Time" in a very different way since diagnosis.
I think about how much time I "may" have left.
I think about how much time I "might" have left to do things I want to do before my body (further) fails me.
I think about how much time I have before Myeloma leaves me no options.

I've been thinking about all of this (more) as it's a new year, another year surviving, yet battling Myeloma and also because I read so many stories online about how many of my Myeloma peers have run out of time. They don't have any more time. The death rate of Myeloma is real. Myeloma is vicious, unpredictable, unbiased, incurable and can steal our options in an instant. 6 years is a huge accomplishment in the Myeloma world. But it's also scary. 6 years of how many, might I have? It hits me: The longer I survive, the less time I actually have...

I read blogs. I read articles. I read Myeloma support group posts. I read Myeloma research. I read oncology and blood cancer websites. I read about the latest studies and new medications. I am so thankful for all the brilliant scientists continually researching options for us cancer patients. I read about Myeloma continually. I am fascinated, yet horrified. I am shocked, still stunned, yet accepting of my situation. I realize more and more each day, month, year, I really don't have the choices I used to think I have.

Cancer's reality "sinks in" more each year.

Myeloma isn't a purchase I changed my mind about that I can return to a store. "Whoops, no thank you. I don't like you anymore. I'm done with you. You don't fit into my life. I'm returning you, you my Myeloma diagnosis". Ya right. Not an option. Not possible. Myeloma is me now. I used to tell my students "make your "monsters" your friends". Don't run. Confront and deal with your issues. Don't try to control what you cannot control. Be aware. Let it go. Now I must practice what I taught. It's really hard to digest all this. Even after 6 years. I always laughed at the "My" in Myeloma. I am Myeloma, and Myeloma is me.

I could link dozens and dozens of articles here. I could site dozens and dozens, hundreds, of amazing blogs here that tug, rip at my heart, and ram reality home to me and other Myeloma patients. Read the blogs I have linked to the right (below). Read the links within the links within the links of these blogs. Read the stories. Read everyone's reality. Myeloma permanently, indelibly changes lives. There's no going back. There's no telling Myeloma to go away. Or to surgically remove it. Myeloma is systemic. It invades our bodies. Permeates everything as it travels, courses through our blood stream, through our bodies, turning our bones into honeycomb lesions, cracking, crumbling, breaking once strong bones. Myeloma is stealthy, conniving and devious. Medications stop working eventually. Organs become exhausted after being constantly bombarded with never ending treatment chemicals. Germs invade. Our bodies become too compromised. Myeloma kills.

Make NO mistake. I am deeply grateful. Revlimid, Dexamethasone, Cytoxan, Melphalan, Revlimid again, Dexamethasone again, have all saved my life. Kyprolis and Dex are now currently, continuing to save my life. You are my elixir. I am in awe of these chemicals coursing through my veins, doing their chemical medical magic. I am fascinated and deeply appreciative. But it's hit me lately. How many medications I have "used up". How many more will work for me, until my options run out... It hits me in the chemo infusion lab, where I see patients (possibly) "sicker" than me, who may not be responding to their chemo medications as well as I am. That will be me one day. One day, I will run out of options. One day. But right now, thankfully, Kyprolis is magic for me.

This new Monday, Tuesday ritual of going to the chemo infusion lab is so surreal, yet so very real. The staff is amazing. They work so hard. They care so deeply. It's not "just a job" to them. They hook us up to our life-saving chemicals. Check, hang, recheck. The incessant beeping of the alarms. I marvel at the chemical content in the bags hug on my IV. I marvel at these clear fluids, how they drip drip drip, precisely dripping into my veins. How many needle sticks have I been stuck with in over six years! 600? 6000? I watch the needle inserted into my vein.
2x per week. 6 times per month. I don't understand how all this works (from a Bio-Chemical perspective). It's just magic to me. Chemo in. Myeloma out!

Honestly, I'm kinda scared now. When I finally accepted that Revlimd wasn't killing Myeloma much anymore, and my numbers were escalating, I knew I had to switch. I did. And I should have earlier. My results now are nothing less than miraculous, in just a few months. Just from November (6 treatments), December (6 treatments), and now January (soon to be 6 treatments). 6 yes. 6 per month. 6 for year #6 lol. Everything is 6 in 2016!

Even though I read insatiably about all the new medications approved and new medications in the pipeline for Myeloma, I'm scared. One day I will run out of options. I didn't really fully process this before when Revlimid kept working for me. I do now. I get it now. I am totally dependent on the continuous flow of new medical chemicals to save my life, to keep me alive. I am totally dependent upon all the brilliant scientists, researchers, doctors, nurses, the healthcare system. I am totally dependent upon what others figure out to keep me alive. I have to be on "something" "forever". I read too much about how other Myeloma patients don't have any more options. How others aren't responding. How their options have run out. How they've used up all their medical chemical options. It's really scary. I am very sad for them and their families. How much time do I have?

I haven't been into my office since late October 2015. That's really huge for me. It's really weird. It's really life changing for me. But I don't have a choice now. Back in 2010, I dragged myself to work when I shouldn't have, during initial treatments. How ridiculous and foolish of me. So desperate to be "normal" and deny my diagnosis. I dragged myself back to work too soon after my summer 2010 Stem Cell Transplant. I was too desperate to get back to normal. Not accepting my "new normal". Too desperate to take my life back. Too desperate to erase cancer and Myeloma from my life. Stupid. I got sick. I tried too hard to be normal. I tried to pretend Myeloma and cancer was behind me. Thinking I was in remission, and I never had to look back. Ha! Stupid! But it worked for me then. I tried to be normal and do normal things. But I only sabotaged myself. Myeloma came back. What was I thinking. I was thinking I was different. I'm Julie and I can beat myeloma. Ha! Nope. Myeloma beat me. Myeloma came back. Gradually at first. Then the roller coaster results. Then the ascension up the Myeloma mountain. I don't know when I can go back to work now. Monday and Tuesday are infusion days. Wednesday and Thursday are crash I feel gross days and I'm in the bathroom days. Friday I feel a little bit better. Saturday I feel better. Sunday I begin to feel pretty good. Then the cycle begins again. Myeloma: You. Stole. My. Life.

As you know, I'm fascinated with numbers and numerical connections in my life now more than ever. So in thinking about how I've rolled over to 6 years of surviving myeloma, I got to wondering the derivatives of that all important 6 in my life. I am not the sharpest tool in the shed when it comes to mathematical formulas lol, so Google helped me with these numerical realities of how long I have been battling myeloma:

6 years x months = 72 months

72 months x days = 2190 days 

2190 days x hours = 52,560 hours 

52,560 hours x minutes = 3,153,600 

Really! Wow! I've spent way over 3 MILLION minutes dealing with Myeloma! Can this please be a lottery, where I get a dollar for every minute I battle.
Actually, I have won the lottery. The lottery of life. I am still here Myeloma. You haven't won yet. Be scared Myeloma, you devious evil insidious scheming cancer.. Kyprolis and Dex is here to gobble you up, and spit you outta my system!

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

Wednesday, January 6, 2016

It's 2016! Hello to Posts on the 6's

Happy Happy New Year Everyone!
Hello number 6
2016 brings me to 6 official years of battling Myeloma. 6 years.
6 + 6 = 12
Yep! 12 months of posts on the 6's coming. These number correlations in my life never cease to amuse and amaze me!! And how 'bout that 6 in my age too.
It's Wednesday 1.6.16 and already 2016 has started out dramatically and symbolically for me. Monday, just after the New Year's holiday weekend (not that I did anything remarkable), I had my 6th, yes sixth!, Bone Marrow Biopsy. Ugh and Ouch. What a way to begin the new year right?! I have a love/hate relationship with BMB's, like all cancer patients do. They are incredibly painful, yet they are so incredibly informative about our "exact" cancer status. So yes, I brave up, shut up and just do it. I often think about "pre-gaming" with pain meds, or asking for "knock out" drugs, but then I just breathe deep and go with it. I'm so tired of being STRONG, but so used to it. Just my nature. No choice.

So at 1:30ish I had the procedure done. Yes my kind doctor numbed my lower hip area as much as she could, and continued to, as I felt incredible pain. She was swift and accurate and calmly talked me through her every move, which I greatly appreciated! My two nurses assisting her were wonderful and caring. The pain, the drilling feeling, the pounding feeling, the coring/cutting into the bone feeling,- it really hurts. I can't accurately describe it. Bone pain is different than any other pain. It's truly amazing what one can "get used to"...

BMB's are always just so dang symbolic for me. They remind me I really do have cancer. They remind me and confirm to me, that I am sick. They remind me how out of control I am of my body, my life, my situation, my body's bio-chemistry, and my options. I don't cry much over my diagnosis, or my life's circumstances, or my status. But I do cry during this procedure as it's just so dang symbolic! I cry at the pain. I cry at at the "why". I cry because I can't believe what my life has come to. Then I take deep breaths, breathe deeply, talk my self silently through it, bite my lip, brave up and it's over. I wipe my tears away, and move forward. I thank all of them for their professionalism, kindness an caring. And then I'm off to blood tests before my 2016 Kyprolis infusions. Boom. Bam. Boom. Bam. You're a cancer patient Julie. This Is Your Life.

I walk the hall to the blood test lab. I've just had a frikn Bone Marrow Biopsy. I hurt. I hurt mentally. I hurt physically. I walk the hallway to the blood test lab. My diagnosis, my procedure, invisible. I smile. I nod. I have shoulder length blonde hair now. I wear make up. I look "normal". No one knows my story. I don't know their stories. I have a medical ID bracelet on. My diagnosis, invisible. No one knows what I just endured. No one knows I have terminal incurable myeloma cancer. I smile. I walk into the blood draw lab. I offer my arms to the needle vampire. I see my burgundy blood. I visualize the cancer cells in my blood, in the vile. I wonder what story my blood will tell today. I walk the hallway back to Hematology Oncology. I chit chat with the nurses, I smile, I thank them. I suppress my feelings. I take my seat in an infusion chair. I look around me. Every chair has a cancer patient. Patient patients hooked up to IV's receiving dangerous chemicals that are so ironically life saving. Life extending. Death preventing. I'm sore. I hurt. I smile. I "fake it, til I make it". First Kyprolis infusion of 2016. I love you Kyprolis. You ARE saving my life! My medical team is saving my life. They are all amazing, and I appreciate them so very much! Hook up. Suck it up. Smile. Grateful. Appreciative. Shocked. How'd it come to this. But I am here. I had yesterday, I have today, I hope for tomorrow!

What I Wished I was doing
Rather than What I was doing
What I dream I Might do one day
6 Kyprolis infusions per month, 6!

 Some where... over the rainbow... 
Somewhere went my life

What would that wish be...

Where will 2016 take me, take you?

Breathe, Smile, Inhale, Live. Life. Fully.
Don't wait! Go. Do. Be. See.

Make 2016 an amazing year!

So many unknown roads
in a cancer patient's life

I am truly grateful for my 6 years. I've learned so much.
I've seen so much, I've felt so much, I've endured so much.
I am 6 years older, wiser, aware. I am a 6 year survivor!

To. Be. Continued. On. The. Six's 

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.