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

Friday, November 22, 2013

Happy Birthday to me... some Refections and Realities

Happy Birthday to me! I made it another year!

11-22-2009 turned the big 5-0... then one month later...
12-30-2009 officially diagnosed with Myeloma
11-22-2013 made it 4 years since cancer invaded!!!


So on this 4 years post-diagnosis-Myeloma-is-now-back-birthday, I can't help reflecting a bit on Myeloma's impact on my life... (I probably bore you with all my reflections lately!) Truly, I have always been a very positive and optimistic person. Cancer hasn't really changed that very much. Those that really know me, know this. I am basically the same Julie I was all my life, just a bit tamer, more tired and fatigued now, and honesty... more limited in overall mental and physical energy. Tamer also, as I am not quite as sarcastic and hilarious as I used to be. Cancer took a bit of my silliness and frivolity away :(

Many question how I can stay so optimistic, positive and happy (not to mention, still working), under current out of remission status. ... which leads me to a funny sidebar here: when people who haven't seen me in a while ask, "How Are You Julie", and I reply, "ok, .... but not sure if you know, ... I am out of remission now?" Often, sadly-funny, their reply is, "Oh that's WONDERFUL news, so glad to hear this!".... Huh???!!! ... oh boy!!!, they must have totally misunderstood what I said, and completely missed the context of "OUT". Most often, I just let it pass by, and giggle internally to myself, as I know they would be mortified if they knew the mistake they made! But if the moment allows, I say... "I don't think you heard me correctly... "my cancer is BACK, and I am OUT of remission" ... blah blah ... and they are then horrified of their mistake... we laugh, chat and "air" hug.

Anyway, back to what I was jabbering about... so on this 4-years post cancer diagnosis birthday, I am still positive, happy, optimistic and very much alive, and living in the moment as much as I can! (Especially since I took my Dex steroids a few hours ago! wwhhhhheeeeeeee my heart is pounding and I think my head is going to blow right off my brain stem!!!) I see everyday as a bucket list day!!! No more waiting!!!

What HAS changed since my cancer diagnosis and current OUT of remission status?
I no longer try to be all things to all people.
I am ok now saying, NO thank you. Not easy at all for me, but I have much clearer boundaries now.
I no longer have the Julie-can-do-it-ALL-agenda.
Less is more for sure now... what little I do now, is big!
I no longer feel the need to accomplish everything and appear to be handling everything.
I have given away power and control and truly live today, for today, and I am a bit more me-oriented.
I am not trying to be wonder-woman anymore.
I don't get a lot accomplished every day... and I am learning, that's ok.
Have another cup of herb tea Jules!

ha ha! posted to my facebook by a dear friend of mine!
But... I am not really ok with not being ok, but I do accept my status more realistically now.
I don't like not being ok, I really dislike feeling sick all the time... but I have little control of that now.
If I don't feel well, I don't push myself.
I no longer feel like an incompetent loser if I don't do it all on the home-front or work-front
I used to impact a lot of students per day... a lot!
If I impact one or two or a few, that's ok... I still matter in this world.
I stay in bed longer, if I feel like it
I stay in PJs-lounge-clothes longer (like now :)
I don't always do "full make up"
I sit and gaze and contemplate more, and process life more, and philosophize more, and think about the what if this, what if that, a lot more now.

I also have some regrets of things I've previously put off... as now I don't have the physical energy to do them. Oh well, maybe I will have more energy again one day... thank goodness my horses are middle-age and seniors now, and so is Jim!!! ahahaaa :) We're all moving a bit slower now!

Some people don't like my reference to a "Bucket List", but I think it's kinda funny. And I am all about funny! Lists and goals are healthy and forward thinking! I really am making a list... and it's not the list most of you would think of when thinking about an "accomplish before you're gone list". Mine is comprised of simple things. Simple pleasures, simple goals, simple activities, simple events, simple fun, living life today. I don't need chaos, complications, challenges or being featured on the 6:00 o'clock news.
Seriously, NO MORE CHALLENGES for sure!!
Hello Myeloma... did you hear me... I said NO MORE CHALLENGES!!!

Ok, on to the (slow motion) birthday celebration!!!!!!!!!!!!!!!!!



I wonder how many more I have?
Calm down friends, I am not freaking out! It's an interesting thought to ponder! :)
Sing along now...
 

And did I mention... I CHOSE to NOT begin all the meds until AFTER 11/22 !  I just wanted one more day of semi pretend normalcy... but ha! Dex you are already making me crazy right now!

Cheers to Revlimid and friends tomorrow for breakfast, lunch and dinner :)


Thank you for reading and caring and posting heart-warming, funny and supportive comments xoxo
_____________________________________________________

Here's a simplified, but great explanation of MM:

What is multiple myeloma?

Multiple myeloma is a cancer of the blood. It affects the part of your bone called bone marrow. Your blood is produced in your bone marrow, which is made up of many different types of cells, including red blood cells, white blood cells, platelets, and plasma cells.
A plasma cell is a type of white blood cell that normally produces antibodies to fight infections. Patients with multiple myeloma have cancerous plasma cells, also called myeloma cells, which replace and form tumors in bones and, occasionally, in various soft tissues of the body. Myeloma cells may also prevent the bone marrow from making enough red blood cells, white blood cells, and platelets.

How multiple myeloma may affect you

Myeloma cells multiply quickly and can build up in the bone marrow. When they do, they prevent bone marrow from making enough blood cells for the body to fight infection and other diseases. Prior to diagnosis, patients with multiple myeloma may experience a number of symptoms that lead them to seek medical attention. However, some patients may not have any symptoms or their symptoms may be vague. Multiple myeloma is often discovered as a result of laboratory testing or diagnostic imaging performed for other reasons, such as a routine blood test.
Common signs and symptoms of multiple myeloma include:
  • Bone pain and broken bones
  • Nausea and vomiting
  • Weakness and tiredness
  • Frequent infections
  • Nervous system problems
  • Anemia
  • Hypercalcemia

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


new treatments for multiple myeloma have become available - See more at: http://www.onclive.com/publications/obtn/2013/October-2013/New-Approaches-Explored-in-Relapsed-Refractory-Multiple-Myeloma#sthash.LaE30QSj.dpuf
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6 comments:

  1. Carole LeighNovember 23, 2013

    Happy Birthday Julie and I hope you had a lovely day! I love this post......almost everything you said is how I feel. My fourth year since diagnosis will be in January right after my birthday and we are both out of remission and back on the chemo trail. We are kindred spirits! I am sending you my love....keeping you in my prayers.

    ReplyDelete
  2. AnonymousNovember 23, 2013

    Hi Julie,
    I love reading your posts. I was diagnosed 10 months ago (after the Drs. thought it was metastatic thyroid cancer.) I relate to your attitude TOTALLY! Thank you for writing about your feelings!
    God bless!

    ReplyDelete
  3. AnonymousNovember 23, 2013

    Big Hugs, Julie. Thank you for the update. This sucks. If we can help with your bucket list, please let us know.
    Love you,
    Claudia

    ReplyDelete
  4. UnknownNovember 24, 2013

    Hey Radar! I think about you every day and hope that you're feeling better. People who don't know about the "Radar" story probably don't understand that picture at all. Ha, ha, ha! So maybe that story will remain just for us.

    Hang in there! I know this isn't a very pleasant experience, but you have an ARMY of people who love you! I hope you and your family have a wonderful Thanksgiving!

    XOXOXOXO!

    Russ

    ReplyDelete
  5. ronNovember 29, 2013

    Julie,happy birthday!Enjoy reading your blog.Things will get better for
    you.Funny how many simple things we take for granted.I know you will
    bounce back and profit from you thoughts now.Continue to smile and
    help others.You are the best at that!
    Ron

    ReplyDelete
  6. NancyDecember 07, 2013

    Hi Julie, so sorry I had no idea you were out of remission. I admire your sense of humor and your bravery. Sending a big hug and lots of love. Xo Nancy

    ReplyDelete

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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.