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

Friday, July 1, 2016

6 Year SCT Anniversary Reflections and Memories plus Current Stats and a Hilarious Story!

Hello July 2016

Can it really be?
In just a few days, it will be 6 years since my July 5, 2010 Stem Cell Transplant to save my life from Myeloma. Wow 6 years ago!
I was in such a naive, denial fog back then. Truly I really had no clue what my diagnosis really entailed, what I was in for regarding treatments, and how long this journey was going to last. I seriously thought I'd just get some chemo, loose some hair, suffer a bit, eventually be ok, and that would be that. Well that did happen... and life moved forward... but I really thought that would be it. I just didn't connect with my incurable diagnosis, and long term treatment life sentence.

Well here I am 6+ years later, still in this battle, still doing chemo, still losing my hair, and even more exhausted than ever, but more in touch than ever with what this cancer journey really is. It is forever. Myeloma is forever. Chemo is forever. Being in treatment is forever. A crazy lifestyle that I will never get used to. But so thankful I am here for my 6th Stem Cell Transplant Anniversary!


Reflecting on anniversary #6 sure makes me grateful and thankful to still be alive. Back in 2010, I think my statistics were quite grim. My doctors really didn't want to say what my timeline might be, but they did always refer to my case as "high risk". I'm pretty proud to be here 6.5 years later after diagnosis. So many I know through blogs, myeloma sites, support groups, the chemo lab etc, sadly are not. Some go faster than others, and some have longevity that blows my mind. I battle forward daily, accept my reality better each day, each treatment, and each time I receive my blood test results.

July 5, 2016. My 6 year Stem Cell Transplant anniversary. I think that's pretty remarkable to have survived this deadly cancer 6.5 years!

Here's a quick little trot down memory lane of that life saving experience. 

Here I am after my Hickman Catheter surgery June 2010

I had no idea this thing would be so invasive
and eventually cause me tons of SCT inpatient complications
with the lovely Staphylococcus Aureus, that nearly killed me

In prep for my SCT:
Thank you Nurse Jan for all our Neupogen injection adventures
and helping build my stemmies up for collection

After more than a week of Neupogen,
my very abundant stemmies were ready for harvesting

Here they are! My 9.5 million stemmies collected
in just 2 days,  June 2010

Soon Cytoxan got the best of my hair,
and in prep for Melphalan, bye bye blonde pony tail
Thank you Christine

Hello City of Hope inpatient status
I'm all puffed up from Dex steroids and hydration fluids
Hello 2 days of high dose Melphalan killer chemo

My sweet chemo nurses chaperoning me outside my isolation room
on the 4th of July

July 5, 2010
Hello Stem Cell Transplant infusion- 
There's my sanitized life saving stemmies, special delivery!

Truly, I had no idea what I was in for, and what the "crash" is all about
If you want to read my journey, check out my June and July 2010 blog posts



And now for my current July 2016 status:
Well... you all probably guessed that my overly optimistic (naive) perspective, along with my low dose approach, my skipping treatments, taking breaks because I have too much to do, and those dang chemo treatments interrupt my life, along with my I'll be just fine, never mind cancer attitude... eventually caught up with me... So here I am reporting in, that myeloma did in fact progress this June. Yes, you can say: "told you so Julie"! Here's my numerical reality check:
 
(My type of Myeloma "trends" via my IgA and M Protein levels)
(Immunoglobulins explanation)
   
(Normal IgA = 70 - 400, Normal IgG = 700 - 1600, Normal IgM = 40 - 230)

Date                      IgA        IgG         IgM
10/18/15              1890       240         < 18
BEGIN NEW KYPROLIS + DEX TREATMENT:
11/18/15              1440       233         < 18
12/2/15                862         230         < 18
12/30/15              482         262         < 18
1/18/16                426         228         < 18
1/27/16                432         221         < 18
2/10/16                551         227         < 18
2/28/16                635         226         < 18
3/22/16                533         242         < 17
4/17/16                717         251         < 17
5/15/16                808         232         < 17
6/23/16               1140!!      267         < 17
                           Yikes!

M Protein: PROTEIN ELECTROPHORESIS RESULT, SERUM
Normal = 0 ... Zero

July = 1.26
Aug = 1.01
Sept= 1.37
Oct = 1.58
BEGIN NEW KYPROLIS + DEX TREATMENT: 
Nov =  1.12
Dec and Jan = Not Detectable! thank you Kyprolis + Dex
Feb =  0.62 Ugh! Quite a jump in a short period of time (Off Dex)
March = Abnormal, but no M-Protein number mentioned (On Dex)
April =  Abnormal,  but M Protein value not detectable (On Dex)
May = .75 That's a BIG upward Trend in just one month!
June = 1.06
             uh oh... :((( 

Ok, don't yell at me too much... I have enough grief from my family, medical staff and friends. Yes, I'm super stubborn about treatment, scared to increase my doses because of fear of organ failure, and I'm scared of worse side effects than I already experience, etc. (Barely made it to and from the June weddings due to GI catastrophes!) 

But I got the message loud and clear yesterday at my monthly oncology meeting, that I really do need to up my Kyrprolis dose. So yes I will. I will start the higher dose this coming week, ironically on July 5, my 6 year SCT anniversary day! How appropriate and ironic is that! Additionally, I confessed that I had been taking a full break of everything on my Kyprolis off week, and I wasn't taking my weekly Dex steroids on my break week. Ugh, I just wanted a few days to feel a bit "normal". Ok, Ok, I learned my lesson. Myeloma is stronger than me, and I have to behave. So no more medication breaks for me. Here goes more intense Kyprolis beginning next week, and dang you Dex, every darn week. I get the message myeloma. I can't slack off, let you become more powerful and win. Not a happy camper here, but my blood work is my reality check. I will behave this month and see what happens. Promise.

 Have you ever seen a multiple flower sunflower plant?
We can't believe the dozens of sunflowers growing from one stalk!

So beautiful! I'm so lucky to still be here to inhale life like this. 

========================


UPDATE!!! HILARIOUS STORY!!! 
So just a bit ago, I was outside preparing our horse arena for a dump truck delivery of sand. (Yes, the horses have it really cushy out there.) We keep the corral very clean, picking up the poop 2x per day. Don't laugh, but this is my source of exercise. Walking, scooping, lifting, walking, scooping, lifting... repeat, repeat, repeat... I purposely put the the "green waste" trash cans at the opposite sides of the corral for additional FitBit Steps.  


 Today being chemo crash day, I'm draggy, groggy, dizzy and just not feeling great, but had a lot happening outside, so I didn't have the choice to just park myself inside, as I should have. Yep, I really should have just stayed inside, because this craziness just happened to me... omg!! so ridiculous, so dangerous, but so incredibly hilarious!

Here's the story:

I went to move the horse poop container, stupidly, with the lid open, hanging down, when suddenly I tripped on it, or it caught on a rock, or my foot got caught.. and boom, over the can went, catching me, tripping me, throwing me half on top, and half in the can, FULL ON FACE PLANT INTO THE HORSE POOP, into the trash can face first! My face got caught on the edge of the can, pushing my neck backwards, as my body splayed across the can.. then I fully slipped into the manure, head first!  

I couldn't believe what was happening, and I truly thought I had broken my neck, as I couldn't move for half a second. How I got myself out, I don't know. But I do know this was the stupidest, yet most hilarious thing I have ever had happen to me. Immune compromised chemo cancer patient falls head first into a trash bin full of horse poop! Yep, that's my life! I am so bruised, so sore, so achy. The left side of my face is scratched, bruised, bleeding and swollen. Probably have bacteria growing in it now... my legs and arms are bruised and cut and I have a killer headache. But, no time to clean up and whine... the dump truck delivery guy pulls up, as I'm wiping off green poop and red blood. 

Want to see a picture?... I think I should go shower first...   
My life... it just gets more hilarious each day! 

=====
Ok, here I am with my lovely facial injuries. I normally wouldn't post a pic of me looking like this, as I am a bit vain, but it's too ridiculous and funny to not post. I also have bruises on my left arm and leg and my back and neck are killing me :(( Sooooooo stupid of me! I'm not very good at selfies either! Note how thin my hair is too..

I will be more black and blue in the days to come
 
And for your final laugh, just picture a trash can like this, filled with horse manure, tipped over, with me head first into it! Seriously ridiculous! An immune compromised cancer patient on chemo, head first into horse poop! I hurt so much where I hit, but my gut hurts more from laughing at what I did to myself!!! 



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


14 comments:

  1. I'll really like this post. Thanks for sharing.

    Hair Transplant in Delhi

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    1. Thank you for reading and commenting on my blog Gourav! :))

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  2. Replies
    1. Thank you for reading and commenting on my blog Rasneel! :))

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  3. Sheri from IdahoJuly 04, 2016

    Oh, Julie, I am glad you are relatively OK from this. You don't seem to be able to catch a break. Funny story for someone who struggles with her own "poop" issues and then falls into her horse poop. Laughter is the best medicine (and some rest, Tylenol, shot of whiskey, perhaps!) Take care!

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    1. Hahahaaa you are so right Sheri! I didn't make that connection when telling this story. I deal with so much poop in my life, it's ridiculous! Thanks for giving me another great giggle! Hope you are doing ok! :))

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  4. AnonymousJuly 05, 2016

    Julie, Julie, and Julie again. The road on your journey has and is a very rough one to say the least but horse poop ? And head first? A selfie before you washed up would have been the poopy on the cake. Yes your determination is strong, your will to survive and your will to live is off the charts. God bless you everyday as you seek out new adventures, let's just keep them clean. Thankfully you didn't break anything. Really miss visiting with you, getting updates and exchanging stories. Thank God for computers and your blog or I'd be left in the dark. In my heart please know I wish we could hug, talk like the we did in the good old days and swap stories. Now that I have my Bachelor's Degree I owe a lot of that to you kicking my in the butt to get in gear, I guess I was expecting job's out of the woodwork. Sadly, I've dealt with disappointment. My school closed for good in June and you know how much I enjoyed it: coaching volleyball, basketball and lots of soccer and my relationship with those kids over 4 yrs. Disappointing that employer's look for "networking friends" vs education, talent and hands on experience. But I'm still recovering from surgery so I have a little time left to look. Life is funny and thing's happen for a reason: I'm on a break right now because my body and doctor say I have to (nothing serious)yet my mind says get up and get busy. Oh well, I am walking 3 miles a day or close to it. I just want you to know I am missing you, thinking of you, truly value our longtime friendship of 20+ yrs and .... be careful. Take care my friend and I'll check in again later... Theresa

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    1. Hi Theresa! Thanks so much for checking in and following my ramblings! We have so many awesome memories going so far back! We really will get together soon, on one of my break weeks. Promise! I will email you sweet friend. Thanks for your update and kind comments!!! xoxo

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  5. Happy 6th Birthday Julie! Not quite the way I wish your celebration would have ended though with your manure mishap! We have those same trash cans and they can be very unruly with the top open! You gave me a good laugh as you always do, but I'm sorry you are now bruised and sore. At least you have beautiful scenery like your horses and sunflowers to cheer you up! Wishing you well as you ramp up your Krypolis and Dex. Gotta do what you gotta do right? EZ and I send our love to you and yours!

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    1. Hi Linda! Thank you so much for always checking in and commenting. So glad I give you and my readers a good laugh. I try to find the "silver humor lining" in everything. Life can be too serious, especially with all this cancer stuff right! Thank you for all your kind and supportive comments Linda. Love to you and EZ! xoxo

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  6. Jules,
    You know what I have to say about cancer so I won't comment on that aspect. What I want to say is AHAHAHAHAHAHAHAHAHAHAAAAAAA!!! :-D Omg I almost peed myself a little reading this hilarious story! I mean, of course I'm so sorry that happened to you and that you are all bruised and battered. That's the shitty part (pun intended) :-) Picturing the actual thing happening though - priceless. I love you so much my crazy shit covered biotch! Xoxo ♡♡♡

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    1. Love you so much Kristin, and thank you for reading and peeing :)) You would have keeled over if you saw me do this. Only regret I have, is that this insane event wasn't caught on video! Thanks for checking in and commenting and being so supportive of my crazy life. You make me laugh always, love you!! xoxo

      Delete
  7. Jules,
    You know what I have to say about cancer so I won't comment on that aspect. What I want to say is AHAHAHAHAHAHAHAHAHAHAAAAAAA!!! :-D Omg I almost peed myself a little reading this hilarious story! I mean, of course I'm so sorry that happened to you and that you are all bruised and battered. That's the shitty part (pun intended) :-) Picturing the actual thing happening though - priceless. I love you so much my crazy shit covered biotch! Xoxo ♡♡♡

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  8. Glad my blog thought you and your comment was so important and awesome (like you!), that it posted 2x :)) xoxo

    ReplyDelete

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.