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Tuesday, October 17, 2017

Meds vs Fun... To Take or Not... That is the Dilemma!

Hello 10.17.17

8 years ago I had some routine blood tests that turned out to be nothing near routine.
8 years ago, unbeknown to me, I was beginning this crazy myeloma journey.
8 years ago I wasn't well, but I didn't know how "unwell" I really was.
8 years ago I was in a very serious "critical" situation, but I had no idea.

Recently, I've been pretty obsessed with my upcoming 8 year myeloma diagnosis anniversary. Quite frankly, I'm "surprised" and super proud that I am "still here". Each day, week, month, year that I survive, I'm incredulous. And when others are too, I smile and say, "you're right, It Is pretty Amazing"!

I then agree with their shock and awe, "Wow" comments:
"Wow Julie, I can't believe you're still on chemo"- (I laugh and say that I've never Not been on chemo lol, and because Myeloma is incurable, I will always be in treatment... forever and ever).
"Wow Julie, it's amazing you're still alive... considering the odds and statistics!" (I laugh and say, I know, it is amazing, right!)
"Wow Julie", can't believe how long you've been fighting cancer!" (I sigh, and acknowledge how myeloma has owned me for almost 8 years now.)
"Wow Julie, your hair!" (I laugh and point to my waves, and say how fun it is to see how each treatment affects my hair!)
"Wow Julie, you look so good". (I smile, say thank you, as luckily I can put make up on, fluff my hair, and Not look like I do when I wake up, or when I don't feel well. And, I mention I don't go out and do things when I don't feel good, so people only see me on "presentable days" lol.)
"Wow Julie, I can't believe everything you've been through!" "Wow Julie, I can't believe all the chemo you've been on." (I sigh and acknowledge how exhausted I am from this daily battle for my life...). Exhausted, but very grateful!

Yep, I too marvel at my status. I agree with everyone's surprise and curiosity at my situation. I feel the same amazement. Myeloma is just so mysterious. What is it really? How did I get it? How can I still be a semblance of "me" and have this deadly cellular monster coursing throughout my entire body? Most can't comprehend that I have been in continuous treatment since my Dec 2009 diagnosis, and that I have to be, to stay alive. Myeloma is a forever battle. Myeloma is incurable. All of us fighting Myeloma, have to fight 24/7, everyday, week, month year. It's relentless, so we have to be unrelenting.

Take a look at this good news, proof of how these powerful meds- (Darzalex, Pomalyst, Dex steroids), are saving my life. Of course, I'm still "Abnormal" and will always be Abnormal (lol), but my labs are not sky high outta control, like they were earlier in the year.

IgA even went down a few points!

Shows my roller coaster drama ^

Not Normal of course, but I'll take it!

No M Protein spike!
It's "Abnormal", but not measurable

Truly, I live my life, One Day At A Time. I really have no idea what each day will bring. Yes I know, same for everyone else. But imagine, going from "predictable normalcies" in your life, to a life not in your control any more. As much as so many say, "don't let cancer rule your life", sorry it does for me. Myeloma and medication side effects completely control my life. Imagine, KNOWING that each week, yes, each and every week, you know you will be sick, or unwell with side effects. Imagine knowing, that no matter what, to survive, you will feel "sick" for a few days of each and every week. That's the "new predictable normalcy" in my life. No vacation from feeling lousy every stinkn week. This reality hits me when I try to plan any events. Everything revolves around when I take which meds, or when my Darzalex infusion is. Or when I take steroids. Or when the 21 days of Pomalyst really drags me down, and I become Neutropenic. Simply stated, my life is controlled by myeloma, myeloma treatments, and when side effects hit me.

Every week, the same drill... knowing you have to plan around being sick, every single week. Imagine that. 

Well, I just couldn't fit in being sick end of last week, or this coming week, as we had so many appointments and potential events. So I decided to skip my weekly steroid regimen. Before you get mad at me, this is what happened: I took my weekly 20mg Dex steroid dose over 2 days the first weekend of October, as that "worked out" in my life. I get a great boost from taking them, but I have to anticipate and plan for the CRASH. Several days of crash, where I feel real lousy, beat up, achy, extreme fatigue, exhausted, headachy, GI stuff, and overall "sickish". Then by the time I recover, I have a day or two to get things done, or have a social event before it's steroid pounding time again. Then it's steroid crash again. So by the time I would have taken them last week, or this week, and then allowed for the crash, it would have intersected several important events last week and this week. Confusing, right?. Frustrating, yes! Just imagine, having to anticipate being sick every week. Every week of your life, for the rest of your life.

Such a vicious circle this myeloma lifestyle is. I have to take life saving meds to stay alive. But those life saving meds make me feel lousy and steal my ability to "live life". When I feel lousy, I don't feel like engaging in life and going places. So I don't have "much of a life"... but I have to continue to take these powerful cancer killing treatments to stay alive, to enjoy the limited life I do have. If I don't do the treatments, then the cancer becomes more vicious, and I won't have a life.

 But there are times, like this month, and probably November and December, that I will "cheat", and skip the steroids, so I can at least anticipate more than a few good days, and get out and enjoy some fun events with family and friends. This Saturday, if I feel good, I'll be at the doggie version of Relay for Life, Bark for Life. Then Sunday, if I feel good, I was invited to bring my lil "Bucket List Bug" to an Oktober Fest event. So you get it. When would I have taken steroids, knowing I had appointments during the week, and fun on the weekends?

Thanks for reading, caring, commenting and checking in on my crazy myeloma life! Hoping you and yours are doing well, and you too can figure out a way to get out there live your life :))

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.