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

Thursday, June 25, 2015

Hello again Neupogen shots... C'mon Immune system, Let's Do This!

Seconds left on this 25th of June! Meant to post sooner as I sure don't want to disappoint my "On The 5's" fans, and my commitment to posting on the 5's. I started this post days ago, but "fortunately" life got in the way and I never finished posting my details. Check back for my updates, revisions and additions.

Yay! My GI system "let" me go out to eat tonight.
Seriously, can you believe the number we got!
Oh no, now gotta "go"...
Dang you stupid compromised immune system and GI reactions :(
That event was short lived... and so are all my other eating adventures

My current stats and why I feel so yucky:

WBCs = 2.3 yikes! (4 - 11 normal range)
IgA= 1630 yikes!   (70 - 400 normal range)
M-Protein= 1.42 yikes! (zero = no cancer)
ANC = 1.0 yikes!  (1.8 - 7.7 normal range)

Me = Neutropenic = Neupogen shots this past weekend- not sure if it made much difference. I'd probably need a week's worth to make a dent.


Good bye Rev 15mg for 2 wks on, 2 wks off. That experimental regimen was short lived.
Hello back to Rev 15mg alternating with 10mg, 3 wks on, 1 wk off
Looks like full on Rev 15mg just compromises my already compromised immune system too much. Such a chemo light-weight I am. And such a "catch 22". I need the higher chemo doses to knock down myeloma, yet the higher doses knock down my immune system, not the cancer.

Ugh... awful GI side effects, thank you Rev and IgA myeloma
Ugh... killer fatigue- I never knew how exhausting being exhausted can be
Ugh... limited limited limited life... booooooo
Ugh... "cheating" on weekly Dex, vs having a life, vs yucky crash side effects of Dex, vs impact on cancer's advance, vs just take it Julie, suffer, live in the bathroom and have no life?


June 19 appointment summary:
I really should add another chemo to the cocktail soon.... I know, I know....but scared, scared


Ugh, Side effects, vs life, vs work, vs fun, vs bucket list, vs homebound, vs what to do!!!

Myeloma, you're such an invisible cancer... "but you look so good... your hair... wow!"... blah, blah, blah, thank you, but my appearance is so deceiving!
Myeloma, you stole my life. You steal my fun. You limit me. I don't like limits. I don't like you at all Myeloma. Just go away, far far away!

Some insightful, thought provoking conversations recently about other's life choices... I will summarize soon...

And do you know what I was doing exactly 5 years ago this June... wow! So interesting perusing my past posts. Can't believe I've been writing, sharing my thoughts like this for 5 years now!
Yep, my 5 year SCT anniversary is coming up July 5 !




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


5 comments:

  1. AnonymousJune 28, 2015

    Hi Julie, I am one of your "on the 5's fan" and I look forward to reading your updates no matter what they say. I am sorry this cancer is so FUCKED UP!! Can I say FUCK? I am so mad that your life has become so limited, that's fucked up!! I remember reading your post from 5 years ago..... I am thinking about you all the time, wondering how I can help, what you are up to....I do know that I can stay in touch and annoy you. I am really good at it! Love you Julie

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    1. Hey Anonymous! Thanks for your funny post! But you didn't let me know who you are :( I can think of several "potty F mouth" friends of mine... which are you??!!! Thanks for putting a SMILE on my face and letting me know who you are, so we can F-cuss together about stupid cancer!!! <3

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  2. AnonymousJune 29, 2015

    Love you Julie xo Hang in there and keep fighting! We are all with you and support you 110%. Will be praying for you every day.
    Leslie C.

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    1. Hi sweet Leslie! Thank you so much for your blog following loyalty and your friendship over all our years! I deeply appreciate your support and kind words always! xoxo

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  3. I hope you are having a wonderful day today.

    Well, I guess cancer just makes me mad. I mean REALLY MAD. Not angry…BUT REALLY, REALLY, REALLY MAD. I totally get that the planet can not sustain billions and billions of people and somehow there is a built in system to make sure that people don't live a thousand years. You know…the circle of life. My grandparents were like parents to me, (especially my grandma). Both my grandparents passed away in their nineties. My grandpa just went to sleep one night and didn't wake up. Simple. Shocking. My grandma suffered with cancer for 3 1/2 years. Difficult but expected. I got to say good-bye to her. Did it make any difference? That answer is no. The end result was the same. We all justified that they were in their nineties so it was their time. They celebrated their 66th anniversary. They lived a very, very simple life, but were happy with what they had and with each other. My grandpa worshiped my grandma until the moment he passed on. Somehow the ones left said it was the circle of life. People don't live to be hundreds of years old. It was time. We all moved on. I for one remember them each and every day, but I was also forced to move on.

    But people like you really make me mad. The circle isn't complete. There is a bubble in your circle that you are stuck in and you can't push forward and continue around the circle. Like a hamster running in that little ball. You are stuck in that bubble taking meds and counting…5 10 15 and oh yes even 20 sometimes. And while you are sitting their counting, life just goes on. We go to work. Go to the store. Make dinner. Get ready to go back to work. And once in awhile a special occasion sneaks in and we have some fun. A holiday. Birthday celebration. A day at the beach. Father's Day. And we laugh and say what a wonderful day it was. But on that day you SIT in your bubble and try to push out, but it resists the temptation to break and let you continue in dare I say a "normal" fashion, (which I'm not really sure that word actually has a definition). Oh you can prepare for days. Watch what you eat. Or don't eat. Select a joyous spot near the bathroom, just in case. Race home as fast as you can, just in case. And you can have a glorious day with careful planning.

    I want you to break that pattern and continue "normally." I WANT THIS!!!!!! Hey out there, is anyone listening to me??? I REALLY WANT THIS? I want you to play and rejoice and not worry about those dreaded numbers.

    Ok…I said it. I truly do understand what you are saying, even if I don't like it one little bit. I know the numbers keep you as healthy as possible, and I'm grateful. I truly am for those ridiculous numbers. I can't wait for the next "five" day to see if you have offered us all some insight to your life. But, I still want to go horseback riding with you and have no worries. Nope…not a single one! But I get the fact that you are trapped, and for someone who is always wordy, I now have no more words. I want answers as to why, and I don't get those answers. I don't understand.

    Have a wonderful day today. Relax and enjoy. Thinking about you as I always do. My heart is just so honored to know you. You inspire me each and every day of my life.

    Love,
    Susan

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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.