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

Tuesday, November 7, 2017

Holding Steady... Well Kinda...

11.7.17
Hello November!

Yes, it's been a long and winding road...

The months roll forward, and I marvel at the progression, my progression. Not such a big deal to the "well person", but to one who's cellular clock is an internal ticking time bomb, the progression month to month, year to year, is always so miraculous and worth daily notation and celebration! As I slowly pack away my Halloween decorations, I can't help but wonder... will I be able, or around, to unpack them next year...

I took blood tests last Thursday, Nov 2 for today's monthly status check. Surprise, no surprise, my WBCs are almost Neutropenic again, as I completed my 21 days of Pomalyst that day. I'll find out today at my monthly oncology appointment, if I need to start a few days of Neupogen/Zarxio shots. No problem with that anymore. I actually look forward to the immune system boost, and I'm now a pro at self injection lol. Grab that tummy chub, and boom, done!

WBC = 2.4 (normal 4 -11)
ANC =  1.2 (normal 1.8 - 7.7)
What's yours?

So guess what happened to me? After a sleepless weekend spent celebrating my 40th (what?! omg!) High School reunion, I woke up Monday morning with a headache and sore throat. Yep, I bit the dust. I've got a "little" head cold. But my minimalist immune system is rallying, and I don't have a fever, and hopefully won't get worse... Had a wonderful time connecting with ol friends and classmates. Can't believe I'm this "old". Life just moves at blazing speed forward while we're living life. Then suddenly a milestone event happens like this, and it's just shocking to realize where I am now. Don't most all of us still mentally feel so young, but the mirror and calendar says different...

 Here I am, early high school days, 
with my beloved first horse "Stoney"

One of my fave girlfriends way back in Elem, Jr High.
Linda and I were "ponypals" back then.

 2 of my fave twinsie girlfriends from High School-
Such wonderful memories.

I would post more, but not sure if everyone
wants to be on international social media :))

Beach weather was awesome, I would have loved to stay the day.
But when I woke up, I could feel my body betraying me :((


To be continued... when I return home from my Dr appointment... 
I wonder what my Thursday Nov 2 labs will reveal? What's your bet? Will my IgA and M Protein be up, down, or similar to last month? I'll post my stats later today.

What a way to live, right... wondering if my triplet cocktail of Darzalex, Pomalyst, Dex steroids is still pummeling myeloma. Or if myeloma is stealthily mutating, and outsmarting these amazing meds, which have been saving my life since March of this year... we'll see...

11.8.17 UPDATE

Yes, I am still battling this "little bug" that invaded me, but so far, nothing too dramatic. For someone with a "normal immune system", they'd probably take a few Tyelenol, extra Vitamin C, Claritin, etc, and go on to work and "normal life". Well, I'm doing that to an extent, but taking note not to do too much, so as not to make things worse. I comment about this, as I am really proud my weak immune system is battling, and I'm not the "typical myeloma patient" who winds up with a horrible respiratory infection, pneumonia, and then in ER.


And now for my monthly myeloma stats. Pretty proud of these too!

Abnormal, but not deadly

Still amazed how well Darzalex, Pomalyst, Dex 
are doing for me. Seriously, look at January!

Not bad, but not normal of course

And finally glad to see that my
M Protein is only lurking, but not showing up ... yet
(see the last result box ^ )

Yes, it's November 2017, and 8 years ago this month, Doctors were letting me know my blood tests were showing "something very unusual, that needed further testing", that something was really "not right" with me. Bleeding out "everywhere", super Anemic, super low WBCs, "unusual Protein levels", extreme Fatigue, Breathlessness, strange Aches and Pains, getting Sick often, a few Bruises here and there, and fuzzy mentally...

I just thought my life was too busy, too much going on... NEVER IN MY WILDEST THOUGHTS, did I think I was REALLY SERIOUSLY SICK...




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



4 comments:

  1. Julie.. looking good with your childhood friend..hope your body continues to fight the invasive bug..my husband just got off two rounds of antibiotics for bronchitis.. Abnormal .. but not deadly..yes those results we take..Jimmy's kappa is slowly rising ..they might add Emplicit.is that one of the new drugs??.. I think that's what they said..but they weren't overly concerned yet. Going to Mt Sinai next week to get results of newest blood.. but he's doing ok.. you still amaze me..in my prayers..karen

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    Replies
    1. Hi Karen, thank you for your kind comments and continual support :)) Glad your Jimmy is better. I've had this lousy "cold" for a week and a half now. Went thru all the stages, etc. I always wonder how to tell the diff between a headcold, bronchitis, pneumonia, etc. Especially with my low WBC, it takes me double time to recover from anything. How did they Dx Jimmy's bronchitis?
      Anyway, I have heard of Empliciti. I think it's similar to Darzalex? What meds is he currently on? Let me know his test results. I just did mine today; will know MM results on Monday. Hang in there, and I hope you 2 are able to get out and have some fun :)) xoxo

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  2. Julie. I was happy to have found your blog. Our journey with MM has been different but yet have had some similar cross roads. I am glad you are getting to cheerish and live each moment. I suppose I am the third neighbor who was diagnosed with MM. Keep your hope strong in your heart and soul. Your MM Sister Carol

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    Replies
    1. Carol!! So glad you found my blog again. I think you followed years ago, when I was first Dx'd. I am so very happy for your treatment success, over 10 years ago?, right? And that your body is so strong to fight off the ever evolving MM! You are a true medical miracle Carol!!! I don't think you've ever been on maint chemo right? You should share your treatment story here, as so many reading my blog would love to know your amazing story of success with tandem SCTs, and Tomo radiation therapy! Thank you again for checking in, and commenting, and see you soon! Congrats on your good health! xoxo

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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 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.