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Tuesday, December 18, 2018

9 Years Ago Today Reality Hit Me... First Bone Marrow Biopsy

12.18.18

Been in and out the bathroom most all of the day, and yesterday, and the day before, etc. The Radiology team wasn't kidding when they told me I would "probably" have lower GI side effects for a week or 2 or beyond, since my lower abdomen, spine, sacrum and pelvis area was the targeted area for treatment. Love the irony of my anniversary days where I have symptoms and side effects that remind me how sick I was back when I was diagnosed. Well I've been sick for 9 years now, so what else is new!

It's difficult for a "healthy and normal" person to understand the never ending treatment and side effects of Myeloma. In my case, I haven't been well for 9 years for sure, and I'll add in the year or 2 before I was diagnosed! And then the incomprehensible factor of daily, weekly, monthly, yearly treatment, non stop, which then causes daily, weekly, monthly, yearly side effects. I try to describe to my "well" friends and family what it is like TO KNOW you will be sick several days out of EVERY week, no matter what, because of the medication crash. Yes, imagine knowing, and planning for BEING SICK, feeling lousy, for 3 or 4 days a week, every week of the year! Hard to comprehend right? Well that's my life. My current "Medication Monday" means the side-effects crash happens Wednesday through Saturday, with Thursday and Friday often the yuckiest. But it's different every week. I never know how I will feel, what side effects will hit me, when, what, how... But imagine, KNOWING, every week you will feel sick. That's just your life now. Feeling sick and yucky every week. Hello Myeloma... The Gift That Keeps On Giving...

So anyway... wasn't planning to rant about that today, but the lovely lower GI side effects have taken over my life for the last week. I'm just like my horses... In one end and Out the other...

But onwards... to "celebrating" my 9 year anniversary milestones! 9 years ago today, 12.18.2009, I was "surprised" with my first Bone Marrow Biopsy. Yes surprised, as I don't recall that it was scheduled (to my knowledge) as part of my appointment for that fateful 12.18.09. See, each time I took labs, my doctors became more and more concerned. When we met, she "gently" indicated the seriousness of my situation, and that I would need to have a Bone Marrow Biopsy done to determine what was exactly going on. I suspect she knew my diagnosis, as I learned quickly, a BMB confirms the diagnosis of Myeloma and other blood, bone cancers. No doubt, having that painful procedure done, was a turning point in my new medical journey. Up to that point, I really believed I was just seriously Anemic, with other related side effects, but I really never entertained the thought of a "deadly diagnosis".

I remember my sweet Dr and her nursing staff talking me through the procedure, as I was trying to be brave, light hearted, and nonchalant about the procedure. But with each jab, stab, grind, pound, drilling into my bone and marrow, the reality of my situation "pounded" me with each pound of the medical tools. I'm not quick to cry, but I did then. I began to sob uncontrollably. The pain was so symbolic of my realization of the seriousness of my circumstances. I cried, my body quaking and shaking, as I apologized to my Dr and Nurses. I remember saying something like, "I'm a really sick puppy aren't I?" .... I don't recall their response, but I know it was kind and supportive and non committal or definitive. I cried more on the way home, as my husband and daughter tried to comfort me, as they too were scared and confused... Yes, 12.18.2009 was the beginning of my new reality, that something serious was happening to me, but I'd have to wait until my appointment, 12.30.09 for the results. Happy Holidays to me, right?! Yes, I had to wait 12 days. Through Christmas, and up until almost New Years to find out what the results of my first Bone Marrow Biopsy was....

Fast forward to now...
Here's my current status and update...

See those words...
"too many areas"...
Yes, Myeloma is eating me up
Another reality check for me


But here's a little good news!

IGA is down from last labs-
Was 2000
But still 4x the high end of normal... 



And so.... this time 9 years ago, Myeloma was RAGING inside of me, and I had NO IDEA. Today, on this 18th day of December, nearing the end of my 8th year living with Myeloma, I am so grateful to still be here, yet always so stunned that I write these posts about me! I truly cannot believe what happened to me this time 9 years ago, and can't believe everything I've survived, and what I continue to do, just to survive. Yesterday in the chemo lab was another reality check for me. So many of the patients there "looked" seriously ill, and one I know from meeting there several times, was having a really really rough time. Although I feel "sick" most of the time, my "sick" is not nearly as bad as so many I see, know. I'm depleted, exhausted, fatigued, nauseated, have lower GI issues, have pain from all my bone involvement, but "in comparison" to so many terminally ill cancer patients, I 'm doing ok, 9 years into this ridiculous battle. When I tell people my Monday Madness Regimen, where I take 10 steroid pills in the morning, then go for my Velcade shot in the belly, then take 8 Cytoxan pills when I get home, most stare at me in disbelief. And I remind everyone, I've been doing some sort of chemo CONTINUALLY for almost 9 years now, to stay alive! Crazy stuff! 

Thanks for reading, caring, commenting, and sharing your journeys with me! Wishing you a super happy holiday season, and may your health allow you to celebrate your "reason for the season" with your family, friends and loved ones. 




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4 comments:

  1. AnonymousDecember 19, 2018

    So much to deal with, to rob your days. You inspire me with your strength. So glad you tell your story. As a wise
    CA cowgirl told me, just because others have it worse, it doesn't diminish your story. MM does become a full time job, and how you add Jim's care into your day is an example for us all. Take care, dear Julie. JC

    ReplyDelete
    Replies
    1. JulieDecember 31, 2018

      Thank you JC for your continued support and appreciation! Means so much to me, to know I make a difference in your life and others! And yes, each of our stories is just as important as the others! No matter our side effects, our illness has changed our life, and we cannot diminish it, no matter how bad or tolerable our side effects are! Looooove you Cowgirl! So grateful you "found me" xoxo

      Delete
  2. UnknownDecember 20, 2018

    Julie... you are amazing and so strong. I remember this day so very well. Thinking of you always Julie and Jim too.

    ReplyDelete
    Replies
    1. JulieDecember 31, 2018

      Thank you for your kind comment of support and appreciation! You forgot to leave your name, so I am guessing who this is :)) Thank you for remembering! xoxo

      Delete

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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.