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

Wednesday, April 18, 2018

Myeloma's Life Lessons Never Stop

4.18.18

Hello Everyone-
I'm alive! But still in the process of surviving this awful sinus crud that attacked me. The 40mg Dex-steroids from Monday have worn off, so I feel super blah, lousy, clogged, tired, weak, headachy, ouchy, and full of crud still. If you haven't read my previous 4.14.18 post, (I just had to sneak in between the 8's), please do. Gives you detail about what my "body of betrayal" has been putting me through recently. I'm still thinking about how "stupid" I was to break all my antibacterial protective rules for my daughter's birthday weekend. Everyone says "it was so worth it Julie"... hhmmm me... not so sure :((

Each time someone talked to me, they spewed their cooties at me!

Duh! Lessons learned for sure:
1- don't go to dance clubs/bars with masses of people when you are Neutropenic!
2- don't go to restaurants, chancing massive cross contamination, when you are Neutropenic!
3- don't go out in crowded places when your WBCs are barely 2.0, and your ANC is .81
4- don't assume Zarxio Neupogen shots will magically make you "normal" and strong enough to battle off invasive cooties Julie.
4- don't pretend to forget myeloma's enormous impact on your life Julie, myeloma owns you.
5- don't let your guard down again, you know the outcome. Your immune system is NOT normal and will Never be normal Julie. Accept. Accept. Accept...

Cooties, Germs, Cooties, Germs everywhere, out to get me!

Yep, I have to, have to, have to, accept I am a cancer patient. My body is not capable of protecting itself. I'm not normal any more. Haven't been, most likely not since 2008. I have no doubt Myeloma was digging in, mutating out of control, and taking over, the 2 years before my Dec 30, 2009 diagnosis. Otherwise, how could I have had 70% cancer at diagnosis...
Yes, I go for so long not taking chances, then I do... and boom, reality slams me, and I'm a sickie. 

Anyway...

Within all this yuk, and sickness challenge, I do have some GOOD NEWS!! 
At my last Dr appointment, also my Darzalex infusion day April 9th, the Monday after my party it up weekend, just before I got sick... I received good news regarding my IgA roller coaster.

IgA not down a lot, but better a little Down, than Up!
Yep, have to accept Dex steroids help beat up my type myeloma

I'm IgA Lambda, so this looks ok
Better too low, than too high

Still No M Protein detected!

Here's all my IG's 


I haven't heard back regarding my PET CT Scan... I think I'll send an email...

Ok, I feel yucky, so today's update is short and sweet. Thank you to all my invisible virtual readers for your interest in my crazy life story! Hoping your life is flowing smoothly, happily, rewarding and with as little drama as possible. I will never understand why things happen as they do... we don't always have a choice in what happens to us, but we have a choice in how we handle all our challenges... I choose to be as happy, grateful, analytical, and forward thinking as I can, when I can. Feeling awful definitely challenges me, and I can get really frustrated and hopeless, but when the fog clears, I'm back to my fighting spirit.



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




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3 comments:

  1. J.D.April 18, 2018

    Can't you wear a suit like the "boy in a bubble"? Then you can come visit our new home in Reno!

    ReplyDelete
    Replies
    1. JulieApril 23, 2018

      hahahaaa JD!! Yes, I need one!! Would love nothing more then to visit you and Jana!! I'll put it on the Bucket List, and look for my HazMat, Bubble suit asap! Sending you both love and hugs always and forever! xoxo

      Delete
  2. LucasNovember 16, 2024

    Very nice postt

    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.