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

Tuesday, January 14, 2014

New year, not so new meds, and the old plan is ok with me!

Happy New Year Blog Followers!
Hoping your 2014 is off to a wonderful start for you and yours, and great things come your way this year!


Funny how old aspects and milestones of my cancer life randomly hit me. As I just wrote 2014, it suddenly sunk in that I have had the formal diagnosis of cancer for 4 years now! Who knows how long it was brewing within me prior to diagnosis..., making the 4 years into 5, 6, 7, double? triple? years ... I'll never know the what, when, why, how and actual trigger of Myeloma... but that's ok. I have accepted that I have an incurable, terminal cancer, or in softer words, a "chronic illness". Some are bothered when I refer to my situation as terminal, and they quickly say, "well you know Julie... everyone is terminal"... ok... whatever makes them feel better... I live with my reality. 

Seriously though, I am so grateful I am still here. Every morning I wake up, I really do take a second breath of realization, that I AM HERE... that I woke up to embrace another day!
I feel fortunate for the "quality of life" I do still have considering the circumstances and what I could be feeling and enduring.
When people ask how I am, I generally reply "ok". Not bad for someone in my situation. I'm here (wherever that here/there might be), I am vertical, I am functional, I am able to engage in life/work in small doses, and I am tolerating my new chemo regimen, and most importantly, I am not hugging a toilet !!! Truly, I feel so grateful for the little things in my world, I am still able to embrace daily. 

And I will always feel so blessed for the medical insurance I've had, that continues to provide me with what I know to be, excellent medical care and a wonderful team of caring Doctors and Nurses. Lucky me!!!

And so on to my current 2014 treatment plan and stats:
Check out my blog entry from November 18, 2013 for a pictorial of my medications.

I am liking only doing 20mg of Dexamethasone steroids only ONE day a week. So tolerable compared to my 2010 initial regimen of 40mg 4 days on, 4 day off!!
The current low dose 5mg Revlimid is also quite tolerable, although fatiguing and tiring, and bit of neuropathy is back.
Thankfully, both meds have put a detectable U-turn in Myeloma's forward march!
My immune system remains challenged... so please stay away from me if you are a sickie, or around anyone that's is or has been sick!!!
The combination of all the meds do make me feel like someone has punched me in the stomach some days, but again, I feel so fortunate that I tolerate the meds as I do. As a matter of fact, I need to go take them now... be right back...

My most recent status in number:
IgA = 1890 for December
January's blood tests show IgA = 1240
Still high, but I'll take the downward slide!
(Normal range is 70-400)
Goooooooo Revlimid and Dex! Stomp and chomp those Myeloma cells!!


M-Protein was 1.40 in December, and January's blood tests show .84
This measurement detects the existence of Myeloma in my blood plasma
(Remission = 0)
But I'll take this, thank you chemo and steroids!

So in summary, we are not being super aggressive with the meds, as I value my quality of life and don't want to feel horrible from high dose meds. But the low dose I am on, is WORKING!!!

I always visualize the chemo and steroids in my system gobbling up the cancer cells like "Pac-man" ! And I just stumbled on this timely and so relevant element of the game:
I quote from Wikipedia: "Pac-Man was designed to have no ending – as long as the player keeps at least one life, he or she should be able to play the game indefinitely."
Well that sure sums it all up for me... keep one life... play indefinitely, no ending!!! wow!! never knew!!! Take that Myeloma!!!


My Kaiser-City of Hope oncologist did discuss the pros and cons of a second (autologous) stem cell transplant, but we're going with the chemo meds first. Just something he wants me to think about, as they weigh the pros and cons of putting me through that again, noting that the outcome may not be worth the risk... Besides, there are several new next generation Myeloma targeted chemos that I haven't had the pleasure of ingesting or injecting yet... so I am comfortable knowing I have several Myeloma devouring options in my arsenal!

Happy New Year to all of you! I am so grateful for your friendship and support!


8 comments:

  1. You are so wonderful Julie! I LOVE your positive attitude! You are such an inspiration to everyone who knows you! I love you so much xo.
    Wishing you exceptionally good health, healing, and blessings in 2014.
    Leslie C.

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  2. Hello Ms. Pac Man.......... CHOMP CHOMP CHOMP....... So good to hear your update and that your numbers are coming down. Happy New Year Julie! Love you, Madonna

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  3. I am so happy that your numbers are going in the right direction! Keep chomping away! Happy New Year! Love, Carole Leigh

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  4. Julie,Glad you health is going the right way.I think it is so neat-the medical treatment you are getting.I think that is partly a reflection of you bringing the best out in people.Keep doing it and keep being so positive.
    Ron

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  5. Love the Pac-man quote from Wiki! Sounds like a plan to me and happy those numbers are going down, down, down! Happy New Year!

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  6. I'm so glad the meds are working!!!!! The girls have been thinking about you lately :). We are sending you lots of love!!!!!
    Xoxoxox
    Claudia

    ReplyDelete
  7. I cannot help but feel glad that, despite what you are facing, you are able to manage with your medications and have some pleasure in your life. I hope this trend lasts a long, long time for you. I send you lots of hugs and love, my special friend. Ilene

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  8. Hey Ms. Julie! Just thought I'd check in on you at the beginning of this new year. Sounds like things are moving in the right direction..........glad you can reduce amount of chemo/drugs and still have some good results! You are such a positive person.............hang in and keep on chomping!!!!
    Gay

    ReplyDelete

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 Alissa 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 team, Dr Lee and Nurse Jalee at Kaiser PC, and Dr Spielberger and Dr Kogut at Sunset Kaiser/City of Hope hospital.
I began to formulate a new reality and accept my "New Normal".
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 remarkably 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!

And now... the 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

June 2010:
High dose IV Cytoxan
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
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 the Heck is Multiple Myeloma?!

Multiple myeloma is a cancer of your plasma cells, a type of white blood cell present in your bone marrow. Plasma cells normally make proteins called antibodies to help you fight infections.
In multiple myeloma, a group of abnormal plasma cells (myeloma cells) multiplies, raising the number of plasma cells to a higher than normal level. Since these cells normally make proteins, the level of abnormal proteins in your blood also may go up. Health problems caused by multiple myeloma can affect your bones, immune system, kidneys and red blood cell count. Although the exact cause isn't known, doctors do know that multiple myeloma begins with one abnormal plasma cell in your bone marrow — the soft, blood-producing tissue that fills in the center of most of your bones. This abnormal cell then starts to multiply. Because abnormal cells don't mature and then die as normal cells do, they accumulate, eventually overwhelming the production of healthy cells. In healthy bone marrow, less than 5 percent of the cells are plasma cells. But in people with multiple myeloma, more than 10 percent of the cells may be plasma cells. Because myeloma cells may circulate in low numbers in your blood, they can populate bone marrow in other parts of your body, even far from where they began. That's why the disease is called multiple myeloma. Uncontrolled plasma cell growth can damage bones and surrounding tissue. It can also interfere with your immune system's ability to fight infections by inhibiting your body's production of normal antibodies. Researchers are studying the DNA of plasma cells to try to understand what changes occur that cause these cells to become cancer cells. Though they haven't yet discovered the cause of these changes, they have found that almost all people with multiple myeloma have genetic abnormalities in their plasma cells that probably contributed to the cancer. For example, many myeloma cells are missing all or part of one chromosome — chromosome 13. Cells with a missing or defective chromosome 13 tend to be more aggressive and harder to treat than are cells with a normal chromosome 13. ~ From the Mayo Clinic