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Saturday, January 7, 2017

Hello 2017 on the 7's

1.7.2017

Well hellllloooooo 2017! Happy New Year to everyone! We've all made it another year. Welcome to "posts on the 7's for 2017". Me, 7 years now tackling Myeloma. So surreal, right?! Hoping your year is filled with happiness, fun, success, dreams and goals coming true for you.


Me- onward I march in this crazy, unbelievable Myeloma battle. You're probably tried hearing me rant, post after post, that this cancer journey is so unreal and I still cannot fully connect with it or accept what has happened to me, but it's true, Myeloma is just "not me". Being a sickie is just not me. As I enter year 7 of treatments, medications, side effects, chemo-type changes, upward dosage changes, body changes, life changes, side effects ad nauseum, I remain hopeful that my current regimen will be effective and give me additional months and years! Today I will go for blood tests, and find out my myeloma stats this coming week at my next Dr appointment, Thursday January 12.

 Wish me good luck! 

Will be interesting to see how weekly 40mg Dex steroids paired with 3 weeks of Pomalyst 3mg alternated with 4mg, pummels (or not), the myeloma cells. I am hopeful, yet scared at the same time. What if Pom 3mg/4mg doesn't make a dent? What if myeloma is raging so strong, that I have to move upwards to 4mg? Then what if 4mg doesn't make a dent? I know I've been "spoiled" by initial super treatment success! Revlimid 10mg, with 40mg Dex steroids 4 days on, 4 days off, brought my cancer level from almost 70% down to 10% in 5 months, prior to my Stem Cell Transplant, July 2010. Then my SCT was a total success, and I was termed "CR"- Complete Response! I maintained CR with 5mg Revlimid maintenance for a little less then 2 years. I had "a life" back then too! From 2011 to mid 2013 I was able to work a bit (while on Revlimid maintenance), engage in a few fun events on steroid days, and go a few places (when not terrified of volcanic GI issues!). Then myeloma came roaring back summer 2013, and back in treatment I went... and here I am 2017, going on my 7th year of myeloma, my 4th year back in treatment after coming out of CR-remission. Whew, what a journey, right?! If you want the whole story, just click on the various years to the right, and I have all my monthly stats and stories there for your reading pleasure.

Throwback to 2010!

Here I am, December 2010, trying to be "normal", trying to take my life back, and return to work. I wound up getting sick from all the college cooties about every other month lol! This was my "poodle" style hair growing back, after I buzzed the last of my blondie locks, October 2010.

I'm happy to report that January 2017, so far... has been drama free, regarding all the dramatic illnesses I encountered in late November and most all of December 2016! So far no more cooties and sickness bugs have attacked me. But, I don't have much of a life, don't leave the house much, don't expose myself to many humans, don't go anywhere most of the time, etc. What a crazy life! But I would rather hibernate at home and be healthy, then go to "war" with all the sickness out there. The few humans I "allow" over, know to wash up the minute they come, put on shoe cootie booties, and be extra vigilant about cleanliness. OCD, yes... and proud of it, as I've NEVER had Pneumonia, or a terrible chest flu, etc... so there :))

Hoping 2017 is my lucky year!

Did I surprise you with my new "on the 7's" post? I'll be updating on the 7's, but I'll also post randomly in-between whenever I have "earth shattering news", no matter the date. Thank you always, to infinity, for checking in, reading, commenting and caring as you do. Hoping 2017 is an awesome year for you and your family, your dreams and plans! 

Here's several links with great articles and super helpful myeloma information. Great reads for the myeloma patient, caregivers, family, friends, and all you healthy people out there, who are mystified at what happened to me :))




Great articles from Myeloma Beacon

MMRF- Invaluable myeloma information site!

IMF - Invaluable myeloma information site! 

Ask Dr Durie super helpful videos!



Well not really! 
My daughter gave this to me
as we looooove the Lion King movie!!
This was my NYE attire :))


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
B-12
.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?”)

Infections

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.