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Wednesday, July 5, 2017

7th SCT Anniversary! Thank You My Little 2010 Stemmies


Wow, can it be? Yes, 7 years ago today I received my own Stem Cells back, in hopes of revitalizing and regenerating my system after months of intensive chemotherapy, with the hope of finally pummeling myeloma outta my universe.

It was mid morning July 5, 2010, with not much fanfare or dramatics, my nurses came in to my hospital room, checked my vitals, checked my IV's, hung a few new bags of "magic potions", (probably hydration, anti nausea meds, etc, can't recall...), and let me know my Stem Cells would be arriving at any time. I was still in a daze about this whole myeloma cancer situation, not to mention being a hospital inpatient, that I just "went along for the ride", nodding my head and agreeing to whatever the professionals said would be the next event. I always felt like I was an imposter, or my diagnosis was a mistake, or I was participating in some sort of "professional in-service" workshop, as it was, and still is, so difficult for me to fully relate to, and accept my illness status.

But catheter lines connected to my main arteries, tubes coming out of my chest, IV bags galore infused into my body 24/7, nurses and doctors rushing in and out of my IN-patient hospital room, all confirmed my reality: That I have a very serious illness called cancer, specifically myeloma, I'm really sick, I'll be sick forever, but this Stem Cell Transplant infusion process will buy me time. How much time, I didn't know back then. No one knew. No one knows now. But here I am, 7 years later! Treatment seems to be an oxymoron: "Precision Guessing" lol.

And the door opens. A quiet, reserved young lady wheels in an ice chest, says hello and that she is here to deliver my Stem Cells!

Didn't seem like a big deal to me. No bells and whistles. No band playing. No wild partying or revelry. Hubby Jim and Daughter Alissa were on their way, but it was just me, the Cyrogenic Lab Tech delivery lady and my Nurse Susan. Back then I just had my little "Razor" flip phone for a camera, and I had only taken a few pictures up to that point. I wasn't as connected on social media or this blog that long, so I wasn't taking a zillion pictures or selfies back then. But I stopped her and said, "wait, please let me get a picture of you holding my stemmies"! She obliged, but shyly. Click, there they were. Saved forever in just one blurry picture. Nurse Susan came and hung the bag, connecting my 5 million stemmies to my Hickman Catheter, and off my stemmies flowed, infused back into by body. No pain, no drama, so very undramatic. Me of course thinking, "ok, so what's the big deal to a Stem Cell Transplant"? "This is so very anticlimactic", I thought. But I soon came to find out exactly WHAT the BIG deal was to this whole process. It's not the actual stem cell INFUSION process itself, it's what the 2 days (prior) of HIGH DOSE MELPHALAN CHEMO, does to one's body. THAT is THE BIG DEAL.

 Fortunately, Jim and Alissa made in, 
just as my stemmies were almost all infused.

And so the days passed. First few days after infusion I felt ok. Then slowly not ok. I was moved from the 6th floor to the 5th floor. I remember so many medical professionals coming in to see me. I called it the "Parade of Professionals". Nurses, Doctors, Social Services, Occupational Therapists, Exercise Therapists, LVNs, RNs, Dieticians, cleaning staff, on and on and on. Seriously, never a dull moment. I was so exhausted. My phone would ring. I had so little energy to answer and chat. I got so I couldn't talk. Too physically weak. Too emotionally drained and affected. Everything became an effort. Getting to my little bathroom, just steps away from my bed, like a marathon challenge. I tried to hydrate and eat a bit, but I was so cautious, as I didn't want to be sick. I began keeping the TV on 24/7. I needed "noise", needed distraction from my own thoughts and feelings. I was going down hill. My immune system was crashing. I felt awful. I developed a fever. My Hickman Catheter became infected, septic. Doctors and Nurses determined it was so infected it had to be removed. And fast. So fast, they sent a Surgeon in to my room to perform "bedside surgery". I remember "seeing the light"... thinking this is it... I'm outta here... I'm going... but I woke up hours later, no catheter, many worried faces, multiple bags of IV antibiotics flowing, into an IV now in my arm. Catheter gone. I then understood what the stem cell transplant BIG DEAL was. It's the chemo CRASH! My immune system was now Neutropenic. Nadir had happened. Melphalan had killed most everything. Good and Bad. My body now has to rebuild me back to health... if I am going to make it... The plan: my stem cells to the rescue. Regenerate my immune system, give me strength, give me power to fight, give me my life back. 

 My view all of July 2010

Although my stay was difficult, 
I had the best of care, with the best professionals
and I will always be indebted to the COH SCT staff!

Yes, my whole month at City of Hope Hospital was one of my most challenging events of my life. I think more emotionally, than physically. Slowly my body healed. Engraftment happened. Slowly my immune system rallied and built back up. Slowly I learned patience. Slowly I learned I was not in control any more. Slowly I began to accept I had terminal cancer, and I would never ever be who I was, before diagnosis. Slowly my body healed. But I was told, my ticket out of the hospital was accepting a new port for my IV meds. See, after my Hickman "blew up" due to the extreme infection (probably due in part to me being allergic to the bandages, and not keeping it properly covered initially), I was terrified to accept another implanted port. But my nurses and doctors let me know, no port, no going home. My ticket to freedom was accepting a Picc line, port-a-cath, a little port installed in my upper arm, to allow home health care nurses to come and help me administer antibiotics, for weeks, months? I accepted. I accepted the port on July 26, 2010.

 Here I was, back then, with my super cool
home IV antibiotic "bag in a bottle" infusion apparatus 

 Late Wednesday, July 28th, I was released from the hospital, and my family brought me home. I cried the whole way home. I cried from relief. I cried from pure exhaustion. I cried because I never thought I would get out of the hospital alive. I cried because I felt the sun in my face, and the wind in what little hair I had left. I cried because I had held in so many emotions for so long, and they just poured out. I cried because I knew there was now hope that I could be "Julie" again. Just Julie. Not Julie the sick hospital inpatient, battling for her life, but Julie, breathing in life, exhaling illness and inhaling sunshine, nature, scented roses and whispering pine trees, horses swishing tails on moonlit nights, and I could once again, laugh with my family, friends and colleagues. 

 And here I am, 7 years later, so lucky to be here
doing all the little things I never thought I'd be able to do,
back during those long, painful days and nights in the hospital...
7 years later... wow! 
Happy 7th SCT to me :))

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
.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.