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Wednesday, December 27, 2017

7 Becomes 8... I've Almost Made It 8 Years!


Hello Last "On The 7's Post", for the 7th year of my myeloma survival!
Wow, where has this year gone? Hard to believe that this is my last symbolic on the "7's" post of 2017. If you are just finding my blog, let me explain.

For several years now, I have posted my thoughts and status on the days representing my years of survival. Hence this year, 2017, my 7th year surviving myeloma, I posted on the 7th, 17th, and 27th. So today, 12.27.17 will be my last "On The 7's Post", representing my 7 seven years of battling and surviving myeloma. 7 years... wow!

12.27.09, I had no idea yet that I had myeloma, but we knew something serious was up. Today, 12.27.17, I marvel that I am still here, getting ready to roll everything over to the "8's", representing my 8 years of life with myeloma. My life changing symbolic date of 12.30.09, the day I was diagnosed with myeloma, is just a few days away... I'll post my diagnosis reflections on 12.30.17 in another post. But for today, I just want to fully embrace year 7.

7 years being a cancer patient, with a cancer called Myeloma
7 years living as a cancer patient
7 years of blood tests and Bone Marrow Biopsies
7 years of oncology, hematology appointments
7 years of chemos, immunotherapies, steroids, and side effects
7 years of thinking about how my life abruptly changed... forever
7 years consumed in whether I would live or die

Congrats to me, and gigantic thanks to my doctors, my chemo pharmacists, medical scientists and researchers, and those loving and supporting me for these past 7 years! We did it! I'm alive 7 years, soon to be 8 years, after my myeloma diagnosis. I think that's pretty impressive, considering how vicious, tenacious and incurable myeloma is.

So what did I do to celebrate the end of my 7th year, on a "7", the 27th? I took blood tests lol.
At my last oncology appointment 3 weeks ago, my Dr scheduled future labs for me to check my status, to make sure my treatments weren't affecting my CBCs and WBCs too dramatically. Often, in my 2nd week and towards the end of my 21 days of Pomalyst, my WBCs plummet, and I wind up Neutropenic, so she prescribes several injections of Neupogen/Zarxio to bring my WBCs up.

But I was so worried about going near any medical clinic right now, as it seems everyone is sick with some sort of awful bug, and I just didn't want to take the risk of exposing myself to cooties! See, I'm finally well from my horrible November illness, and I haven't ventured out in public much at all, all of December, so bad me, I wasn't going to go do these labs. But around 5pm, I received a call from my Dr's nurse, telling me to please go, and do my labs. Ugh... ok ok, I'll go. Yes I wore a mask, didn't touch a thing, and went as late as 8pm, hoping for less people there. My plan worked, and I got in and out rather quickly, and picked up my Neupogen Zarxio shots, without too much exposure to others. While waiting for my Rx, I stood by the open door, mask on, and walked the long way back to my car, outside, not through the office.

OCD, yes! Scared of more germs, yes! Super cautious and protective, yes! So far, my plan has worked, as I've never been hospitalized since my SCT, and haven't ever had pneumonia... what us myeloma patients fear the most.

Anyway, I feel ok, just fatigued as always. Coming off of my crash from my weekly Dex steroids I took on Christmas Eve morning, to make it through the 24th and 25th with some semblance of energy. With the New Year's holiday coming up, I probably won't have my myeloma stats until my next Darzalex infusion on January 2, 2018. Whoa! there's the 8! 2018... my 8th year with myeloma...

Soooo.... MY FINAL POST FOR 2017 WILL BE DECEMBER 30, 2017 AS THAT DAY WILL MARK MY 8th ANNIVERSARY OF MY MYELOMA DIAGNOSIS... and that's a really BIG DEAL to me. So check back for my final thoughts for 2017 and my official goodbye to the 7's and my ushering in the 8's :))

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.