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Friday, December 16, 2016

Myeloma! The Gift that Keeps on Giving

Hello 12.16.16

I almost wasn't going to post again, as I am so tired of myeloma in my life. So tired of myeloma consuming so much of me and my life, taking over my thoughts, my life, my physical and psychological being 24/7.  But I know I left you hanging regarding my next treatment options, so here's the quick update below. (All my current blood work stats are on my previous 12.14.16 post, if you want those surprising details.) Thanks for checking back and caring as you do!

First off, thankfully I am finally better from my lousy cold, that caused my awful incapacitating back, shoulder pain. So intense. So torturous, but easing off a bit each day. Today begins my off of Dex steroids- crash, so we'll see how bad things get without the steroids propping me up and helping with the horrible inflammation. My Dr did give me a Rx for a muscle relaxant, to use as needed.. so we'll see how this goes... ugh! Been a really challenging last few weeks, month.


Honestly, so much is a blur to me, as so much has happened in terms of me facing new (and old) realities, but essentially, my Dr suggested I move to Pomalyst 4mg (the highest dose). I (of course) then suggested moving a bit more slowly, so as to avoid the rash reaction again, suggesting we blend, alternate Pom 3mg with 4mg, like I did back in 2015 with Revlimid 10mg and 15mg. I've just felt so yucky and challenged, and I'm just so very tired of never feeling well, I just didn't want to jump to 4mg immediately. We agreed on this plan with a wink and a smile. I didn't feel Pom 3mg was given a full chance, considering all the things going on at once with me, this past month. So one more month of 3mg, but now, alternating with 4mg, and then see what story my blood tells in January.



I'll start this new regimen on Monday Dec 19 for 3 weeks, paired with the Dex 40mg per week. I've found Dex to be a bit more "friendly" when I don't superpower myself with the entire dose at one swallow. Plus I've needed to space it out recently to help with the horrible back issue, and now with Christmas and New Years coming up, I need to "properly time" my bipolar Up and Down, so I can enjoy the holidays a bit. OMG, this is all sooooooooo ridiculous. I cannot believe what I am writing and planning. It's all still so surreal, even after almost 7 years of continuous treatments.

Speaking of 7 years. 7 years ago this time, I was being seen weekly in my new shocking, unfamiliar, I can't believe I am here, office of Hematology Oncology. I just looked at my lab history and saw that on this day in 2009, they drew a lot of blood for a lot of tests (all the myeloma marker tests I know all too well now), and saw something about "draw and hold for Transfusion" ... So much was going on then, and I sure didn't understand the seriousness or the implications of what was being tested. Reality did hit, and hit hard on 12.18.2009 when I had my first and very painful, Bone Marrow Biopsy. I remember Dr Lee and Nurse Jalee being so kind and caring about the procedure, but it was SO INCREDIBLY PAINFUL, and that physical pain, slammed the psychological reality home, that "I was one sick lil puppy"... the comment I tearfully made, as I turned to the wall, while lying on the procedure bed, and began sobbing my eyes out, realizing my new reality. I knew at that moment, and that's when I fully absorbed, something big and bad was going on with me...

So anyway, so much to reflect on, so much to process, so much happening in my life, yet so little energy for anything at all. I'm sad that I wound up so sick these first few weeks of December, and the holidays are almost here, and I just don't have the helium to do much about it. Oh well, things are what they are. Life is what it is, and there are so many, far far worse off then me.


I wish all of you the very best for whichever holidays you celebrate. I wish you love, inner peace, serenity, happiness, joy, warmth, fun and a life full of that which makes you happy, so you can share joy with others. I wish you positivity and fulfillment, so that you can give back and contribute to this world. I grapple a lot with "Why Bad Things Happen to Good People" and why the world is in such chaos. I just don't understand all the challenges, heartache and heartbreak, disease and violence, etc, with humanity. Nature just seems so perfect to me, the natural world is just so beautiful and self sustaining. Yet there are just so many human battles going on everywhere on every level for everyone, I just don't get it. I just want peace and happiness... oh well...



https://www.themmrf.org/multiple-myeloma/what-is-multiple-myeloma/ 

https://www.myeloma.org/what-is-multiple-myeloma

http://www.myelomacrowd.org/




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

4 comments:

  1. Merry Christmas, Julie. I'm glad that you have a muscle relaxant to take as I've found them helpful, although they can make you feel a bit goofy. It's almost an oxymoron to say that to someone who's already on Dex! This is such a difficult time of the year to feel awful. I hope life will pick up for you.

    ReplyDelete
  2. Hi Yellow Rose, thank you so much for checking in and leaving your fun comment! I smiled at the goofy/oxymoron! You are so right about Dex. Such a biopolar reax, but I sure do enjoy the "high". Luckily I only needed the muscle relaxant for several days, and took it at night, so I never got the "goofy" reax, as I would have "enjoyed" that too! Thanks for posting, and I wish you very happy holidays. :) Julie

    ReplyDelete
  3. Julie,You are amazing how you can think about others
    after all you have gone through.Hope your family and you have a great Christmas Holiday

    ReplyDelete
    Replies
    1. Hi Ron, hoping you had a wonderful Christmas with your family! And yes, my thoughts are always with others and who were all are, and what our "purpose" is here. Thank you for always checking in!

      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.