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Wednesday, December 14, 2016

And... The Drama Continues...

Hello 12.14.16

Dear Friends and Followers:

If you haven't read my 12.6.16 post, please do, as that drama has continued in my life. Fortunately, the several day course of Dex Steroids gives me a break, then back (lol funny unintended pun) to the excruciating pain, that has migrated from my lower back to my mid and upper left side, back, ribs and chest. It's the take-your-breath-away type of pain. Pain like I have never experienced before. The RELIEF from Dex is undeniable and truly unbelievable!
I will be doing a "Skeletal scan" asap to check for Lytic lesions .

So why my post on December 14? Another off the "6's theme" post? :))
It's symbolic December anniversary time! 7 years, yes SEVEN years ago today I had my FIRST shocking appointment in Hematology Oncology, and I must note this pivotal moment in my life, annually. I will never forget the shock and awe of THAT DAY as if it was today...


December is my month of my life changing, mind altering, never to be the same Julie ever again, diagnosis anniversaries. Still so incredible and unbelievable to me. Each year of survival is incredible to me. All the December 2009 pre-diagnosis blood tests, conversations, my first Bone Marrow Biopsy, all the medical appointments, all the realizations, still so incredible to me. Everything still so shocking. Yes, I am very "lucky", blessed and very fortunate in so many ways, but each year has been so different, so challenging, depending on my cancer status and treatment protocol. If you'd like to read my thoughts on each previous anniversary, look to the right and click on my December posts since 2010. I think this December will be my most conflicted, melancholy, reality-check oriented of all my anniversaries...

My first Hematology Oncology appointment was with Dr Soon Ki Lee. Random assignment? I don't know. I'll never know. But how "lucky" was I to have her as my initial myeloma doctor. Tragically she passed away last year. Still unbelievable. She diagnosed me with incurable, terminal cancer and I am still here. I am about 9 years older. I am here, she is not. Beautiful human being, inside and out.

 Dr Lee, you will always be in my heart and thoughts
and always and forever a part of my life
Miss you so much. Thank you for sending me to Dr Pakanati!


Yes, there's so much  more!
So much more to report.

I had my first month on Pomalyst status check, yesterday Tues Dec 13, and thought you'd like to know how Pom and I are doing together. I did lab work Thurs Dec 8. Unfortunately it was on Pom day #18, so my blood does not reflect a full 21 day cycle of Pom. Not to mention all the Jr Tylenol, and Jr Advil meltaways I "ate like candy" to try to get some relief from the excruciating back pain... And due to the initial Pom rash reaction, I took Jr meltaway Benadryl most every dose too. And I was battling the lovely head cold that caused my horrendous back issue.
Hmmmm, wonder how these meds (and my crazy "complications") may have affected my results? I reported everything to my Dr, but we didn't discuss possible interactions, and I wasn't on top my game (because of my pain), and forgot to ask if there might be Pom interactions.

I'll let these picture stats do the talking here:

Yep, wow! Pomalyst didn't make a dent:
 As matter of fact, 
it looks like Myeloma laughed at Pomalyst
and grew stronger

 Fatigue, Fatigue, Fatigue
No helium, no immune system
Side effects, side effects, side effects galore...
Ugh, where's my "bubble"



Ok Pomalyst, get to work
Pummel those cancerous proteins messing up my life

Whoa, what's up with this one?
Never really saw this one!
Yikes! Looks like Myeloma likes Pomalyst
and isn't the least bit scared :((

Yes, my Dr and I had quite the chit chat about all these numbers, and what's going on, and what to do. Have any guesses what she suggested, and "we" decided on? Yes, you guessed it, my Dr wants me to move to the 4mg Pomalyst, and me, ugh, again fears, fears, fears, fears... Fear of harming my kidneys, liver, other organs, etc, from high doses of meds. Fears of additional side effects. Fears if I move up, but it won't work, then what? Never felt that before, but from this first month on Pom results, I have new fears I haven't had to face head on before.

But I know, I know, I have to do it to stomp myeloma. So what do you think I suggested? Yep, my head is spinning, my mind is analyzing, my whole self is scared, I'm processing this reality, and putting on my big girl boots for the "next step". 

Thank goodness for Dex Steroids propping me up, as the physical pain was doing me in, and now this reality is the not so sweet icing on my not so tasty cake. So the next plan of action Hello 7 years battling myeloma. I'm not sure I'm going to be a fan of 2017... but then again... there is a lot happening in the myeloma research and new medication options circles.

I'll end on some GOOD NEWS for you, as I'm guessing my myeloma followers are wondering if the pain might be from pneumonia? NOPE! Per my Dr, my chest and lungs are clear! It truly was "just" a lousy headcold and one WRONG position cough, that messed me up big time :(( 

Thanks for checking in and caring about my story as you do. 



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


2 comments:

  1. WOW..I am speechless and really can't find the correct words to say a thing. You have gone through the ringer. The cough, crossing the leg's and the back oh that pain is the worst especially when there is not a damn thing to do about it. Of course your family was concerned but you know your body. Have you notice your pain tolerance level going up? These number's truly make me sad Julie. I'm being honest with you my friend. What you are feeling in your body, mentally, emotionally and spiritually I just have to say "strength, balance and strong will." Medicine is changing so rapidly and I pray for the Julie cure. I just have to take a deep breath here...in.....out. and you still smile. I'm thankful for your honest blog and updates. Wish we could visit with each other but in time. Take care my friend and know I love you. Your friend, Theresa

    ReplyDelete
    Replies
    1. Hi sweet friend Theresa! Thank you so much for checking in and following my crazy story! You're on my 2017 "bucket list", to finally get together and catch up. I'll let you know a "good steroid day" asap! Hoping you had a wonderful holiday with your family xoxo

      Delete

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.