Cowgirl Up!!! ... Does Horse Poop Cause Cancer??

Tuesday, December 30, 2014

5 Years ago TODAY... Boom! MM forever Changed my Life

Yep, 5 years ago TODAY, somewhere between 11:30-1:00, I was officially diagnosed with Myeloma. Multiple Myeloma. Multiple stupid Myeloma. But I'm still here, 5 years later!!!
So I've lived 6 myeloma December 30th days, surviving 5 years since diagnosis... weird math that is!
12-30-2009
12-30-2010
12-30-2011
12-30-2012
12-30-2013
12-30-2014

But it's the dash ( - ) between the years that matters and adds up to those important 5 years!
2009-2010
2010-2011
2011-2012
2012-2013
2013-2014
Ok, enough of my numerical silliness.

2014 is rolling over to 2015 in just hours and December hasn't been very kind to me. This month brought a lot of GI upset-unpredictability, tiredness, fatigue, headaches, neuropathy-buzzing, etc, so I didn't do much or leave the house much. I missed being able to enjoy fully moving into my new office and missed holiday festivities with my staff, friends, family, pets, nature, etc...

Then several days before Christmas, I totally bit the dust with a lousy sinus head cold fever thing. Still not fully well now, and sadly Jim and Scott caught my cooties this week. Cruel stupid germs. I see NO point in illness and sickness... (except isn't it nature's way of eliminating the weak...). I hate being sick and I hate being weak. But, thanks to what's left of my immune system, my biological-military battled the bugs and I am better now without hospitalization or Antibiotics! And that's a a big deal to me, as I was always proud of how healthy I used to be, how few bugs I caught, and how my body battled on it's own.

Just before I really bit the dust and my 101 fever tortured me, B.F.F. Kristin came over and she and Boots fell in love:





These are some of the cutest pictures I've ever captured!

Not long after that, I really went down hill fast and spent the last week feverish, all stuffed up, coughing, etc. We cancelled all our holiday festivities and parties. I didn't even get around to decorating the house this year, as I just didn't have the internal "helium" this December...
Did I mention, I haven't been on Revlimid for a week and a half+ now...  just happened to end my 21 day Rev cycle right as I got sick, and I felt so yucky, I haven't taken Dex for 2 weeks. Such a cheater I am!
But in the last day or so, I have felt better and even able to have a super fun moment with some of my fave student/office pals today. I look like the little ol bag lady lol with her bag (which was take-out for my sickies at home). Thanks everyone for coming out to celebrate, notate my 5 year anniversary!

 Talk about a Fun group!!!

And as the sun sets on 2014...
I continue to evaluate and reevaluate my situation, and really, the only wish for 2015 that I have, is to have the physical strength to do the things I want to do... which is really not much at all. I just want my pre-myeloma life back, so I can go where I want, do what I want, be there for others and not be consumed in physical symptoms, side effects, medicine regimens, and germs out to get me!

And just before I logged in to write this blog, I read an email from my awesome oncologist. I had written to her when I was sick, updating her with my situation and cancelling my appointment for last Friday. I have a new appointment for this coming Friday after New Years. She sent me my blood test results... and also said... "M-protein is up... thinking about going up on Revlimid... let's talk about this on Friday... please don't worry... we have other options..."

WBC = 2.7  (normal = 4 - 11)
ANC = 1.4   (normal = 1.8 - 7.7)
IGA = 1070  (normal = 70 - 400)
M-protein = 1.14 (no cancer = 0.0)

So Happy New Year 2015... hellooooo Revlimid 15mg.
Of course 15! It will be 2015
And of course continues my #5-theme!


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

8 comments:

  1. Hi Julie! Happy New Year! Sorry to hear you have been down with the "crud"...for us it was the flu, and it was miserable. Two weeks later we are still weak and coughing, but slowly improving. Thankfully EZ avoided pneumonia, but the fever and body aches knocked him off his feet. No fun over the holidays when you can't enjoy the good eats and fun times with grandkids! Love the horse pictures above...so cute! Praying 2015 brings some resemblance of pre-MM normalcy so you can get out and enjoy life!

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    1. Always so wonderful to hear from you Linda, and I am thrilled to read your blog update! So beautiful and inspiring! And I am so happy EZ is doing so well. Happy 2015 and cheers to many non-MM adventures for all of us :)

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    2. Julie,Congratulations for your 5 year anniversary!! I really enjoyed the comment from the 6 year friend`s last blog you wrote. You have such a knack at uplifting people I think that is what helps your medical condition so much.
      Since I also like numbers thank you from all of us for writing more often than in 2012 or 2013.

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    3. Thanks Ron for appreciating my writing here and on others' blogs. I could write daily, but I wouldn't want to bore everyone with my daily musings ;) Thanks for all your support! Hope all is great in your life!

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  2. Hi Julie,

    First of all I have to start by saying I like Ron's comment with regards to your blogging numbers. I so wish this blogger had a 'like' symbol/button and why can't we insert emoticons, I like them too? :) What I find even funnier is that whenever I type the word 'blog' the spell check tells me it is spelt incorrect.

    Happy New Year to you Julie. I truly hope that 2015 is going to be your year. A big, big congratulations to you for reaching 5 years. So well done!!! You are such an inspiration to us.

    Sorry to hear you have been ill, not nice at all. But if for nothing else what I have learned from MM, you have to listen to your body. One step at a time. You must be so despondent about your M Spike reading too. xx

    All these thank you's but thank you too for your lovely words of inspiration on my blog. It's fabulous being friends with someone so far away with so much in common. You will notice that I never comment on the comments and this has come about because I kept just finding myself saying thank you to everyone all the time and I didn't want that thank you to lose any importance. I see you are very good at commenting back :) Perhaps I should make my new years resolution to make a better effort at commenting on comments. They do mean so much to Jimmy after all.

    I updated our blog tonight; we heard yesterday that Jimmy goes in next Tuesday for his SCT. All I can say is.....nervous days ahead! But you can read all about it.

    Lots of love,
    Viv

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    1. Hi Viv! Yes a resounding THANK YOU to you and the others too. I agree, as I find myself always thanking my supporters and commenters. Means so much to us to have the support and encouragement. So don't worry about over-using Thank you :) I agree, I wish the blogs had a "like" button too. Not sure why Google hasn't gotten with that yet! And back in the day, I was so overwhelmed with my situation and treatments, I didn't comment back much either. I also didn't know if people would stop by on the same post to see my comments... again, too bad our blogs don't have that notification... so thank you Vivienne for all your support, and I will read Jimmy's update asap! Hugs and love from across the globe :) xoxo

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  3. Hi Julie, just had a chance to read your latest post. So sorry you were down for the count in December and holiday festivities and all. Looking forward to a time you feel well enough and have the time to connect for one of our fun visits. Love you. Gay

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    1. Hi Gay! Great to hear from you, and I look forward to catching up with you asap! Yes Dec was quite challenging for me, and hope things calm down... but not a chance... with my higher dose. O well, at least I'm still here and have as many good days as I do, when I do, and we'll get together on my next good days! Thank you for being such a great supporter! xoxo

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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 capsules)
Pill form Dexamethasone Steroids (40 mg!) paired with Omeprazole
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12- to build those cells!
.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.