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

Thursday, October 6, 2016

On and On and On to Infinity Goes Myeloma

Hello 10.6.16

I'm not feeling great today as it's chemo/steroid crash, living in the bathroom day... and I've had this intense sharp weird left side ribcage bone pain that's really sucking the wind and life out of me. I can handle a lot, but truly, pain is so debilitating. Especially "unknown" pain. It's really awful and has gone on for days and days or over a week... It's all a blur now... I'll tell more about it below...

Not much new to report regarding my treatment success, (or not) status...
I'll update my monthly labs next week. So for my current status, please see my previous post just below with all my details and numbers :))

And how I try to be strong all the time, but
being a sickie is so exhausting and such a waste of life...

This past Mon and Tues was my last Kyprolis infusion for this current (Sept) cycle. Cycle #12, I think. 3 weeks per month, 2 days per week, of Kyprolis/Dex. (Can you even fathom being sick, and being in treatment for over 6 years? So surreal!) It will be interesting to see how the doubled dose of Dex steroids (new, stronger regimen this month forward), will affect beating back Myeloma. Thankfully, jumping from 20mg Dexamethasone to 40mg, wasn't as dramatic as I expected (side effect wise that is). Hopefully, that's a good sign?! Or am I just jaded now to just feeling sick all the time :(( This may lengthen and intensify my "crash" period, but we'll see. But most importantly, is "Double Dex" in there scaring the heck out of the Myeloma cells and debilitating their powers? Hopefully Kyprolis likes the increase too, and "2x Dex" gives Kyprolis double the power. My labs will tell the story later this month. Stay tuned :))

Get in there "good poison"
and do your thing!

Let's pummel Myeloma

As bad as I feel about my circumstances, I always get a wake up call when I'm at my chemo lab as there are many "sick looking and feeling" patients there. I truly feel so bad for them, especially for the ones new to their diagnosis and treatment regimen. If we chat, I always give encouragement, hope and promote the fight! On my "good days", I don't really look like a cancer patient on the outside, and no one really can wrap their head around how sick (and incurable) I am on the inside. Myeloma is so weird in that sense (for me and many other Myeloma patients). I feel like I always have to give "disclaimers" about my circumstances, status, appearance, etc. "Yep, been in treatment almost 7 years now!"...  "Yep, Myeloma is incurable"... "But wow Julie, you look so good"... "Your hair, wow, your hair looks so good"... "You don't look sick"... "You don't look like you have cancer"...  "You're so positive and so full of energy". "Wow, how do you do it"! Blah Blah Blah. How? How do I do what I do? I force myself to be ok. I force myself to appreciate every little thing about still being alive. I force myself to get up, fix up, get dressed in a fun theme, put make up on, style my hair... smile, laugh, smile, laugh and deal with all this shizzzzzzz. I'm friendly and outgoing naturally. I bring "the party" to the chemo lab. And for sure let everyone know that on chemo lab infusion days I AM PUMPED UP ON MEGA STEROIDS!! So that explains why I am able to function as I do. Steroids are amazing and crazy for sure. I'm sure they are wreaking havoc on my body in so many ways, but at this point in my treatment and life, I'll take the 2x Dex pump up and enjoy the ride for 2 days!


So I have this weird random sharp stabbing achy painful hurt, take your breath away feeling in my left rib cage area. Yes, I do things I shouldn't (animal chore related), but seriously, nothing extraordinary. Except about 2 weeks ago Jim and I tried moving a file cabinet into the house, and I moved, lifted tires for my VW, and did my usual horse poop raking (for daily exercise), and various other "normal", minimal, nothing extraordinary chores. Fortunately our kids always come over and help, but I didn't think I had injured myself in the process. And who knows the other things I may have done to injure myself, like basic bending, stretching, laundry, house chores, ranch chores, etc. But seriously nothing extraordinary, as I simply don't have the strength nor energy to do much of anything, ever! I push myself daily to do little things and just move around, doing slight things to "exercise", because just sitting and resting all the time isn't good either. What in the world, how in the world, why in the world am I suffering so much, so often :((

This past Sunday this intense sharp stabbing pain took my breath away. Literally, I couldn't breathe properly from the pain. I began to worry I may have really injured myself, or had a rib puncturing my lung or worse, and... super scary thought..., maybe Myeloma was really moving in, and I was developing a Plasmacytoma tumor or broken bones due to Myeloma's 7 year progression inside of me. So I went to Urgent Care and had xrays done. Fortunately the Dr did not see anything broken, but did suspect bruised ribs, soft tissue injuries, pulled muscles, pinched nerves, etc. What the heck! And it's not any better... I can't believe how awful I feel right now, with the combined chemo-steroid crash and this incredibly painful achy rib cage. Seriously life... why??!!

**************
3 years ago today, my sweet lil "Bucket List Bug" was delivered. What a fun adventure it's been and having this lil throw back to my adolescence has brought me a lot of joy and laughs. I don't have the energy to drive her much, but just knowing I have her, makes me smile. For those new to my blog, I spontaneously bought a replica of my 1972 VW Bug, back in October 2013, when I came out of remission and started back full throttle in treatment again. I realized it was time to begin paying attention to my "Bucket List", and doing the few things I could. If you want the whole story, just look for my Sept/Oct 2013 posts on the right side menu of my blog.

Here's my lil Bucket List Bug being delivered
October 6, 2013 
3 years ago today!!

And as a little symbolic anniversary present to me, I recently bought "real" white wall tires. Honestly, back in Oct 2013, I didn't know if I'd see Oct 2016. I've learned to do what I can, when I can, and do little things that make me smile. Lesson: Make every day count (as much as possible). Live life on your terms, on days you can. Do what you can to make a difference in this life. Smile as much as you can, and process the fine line between the tragedy and comedy of life. Let stress, anger, anxiety, plans, disappointments, frustrations, etc, go. Just let it go.
It's taken me all day to post this, as the rib pain is so intense, and the chemo/steroid side effects have kept me in the bathroom on and off alllll day. Should I cry or laugh? I shake my head, cuss a bit, and laugh at the ridiculousness of my life's circumstances... 

Here's lil Bucket List Bug with her new whitewalls!
Notice the blue tint? 
That's the protective film still on, and so crazy
how it matches the paint color!

And finally, no matter how I suffer, no matter how much I have to endure, no matter how awful I feel, no matter how often I question my status and options... I am one of the lucky, blessed, fortunate ones to still be here. This past week, our Myeloma community experienced an immeasurable loss. My "blog girlfriend" Lizzy Smith lost her battle, suddenly. I was shocked to read of her passing. I don't know the details, but read she was hospitalized with pneumonia and passed suddenly. She's fought since 2012, endured so many treatments, 3 stem cell transplants, clinical trials, yet lived life to fullest with her family. Lizzy contributed so much to our online community, blogging, writing, speaking, raising awareness for so many Myeloma issues. She and Jenny Alstrom created the Myeloma Crowd, an invaluable, wonderful, amazing resource for all of us! I never actually knew Lizzy personally, but like so many of us spinning in this crazy Myeloma vortex, she was a sparkling gem and her loss leaves a permanent dent in all of us, just like Pat Killingsworth...




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


Posted by

6 comments:

  1. LoveyOctober 06, 2016

    Julie, despite what the x-rays showed, your pain descriptions sound like a fractured rib. I've fractured 7 ribs over the past eight years (never knew how they occurred), and the pain was exactly as you've described.

    ReplyDelete
  2. JulieOctober 07, 2016

    Hi Lovey, nice to hear from you! How are you, and how are you doing? Wow! 7 fractured ribs?! Ouch!! How'd you do that? I re-read online and you're right, it sure sounds like that's what I have done! The pain is unbelievable and I am taking Advil and Tylenol like I've never done before! I generally have a pretty strong pain tolerance, but this is killing me. Scares me for MM bone pain down the line :(( Thanks so much for commenting, and let me know how you are :))

    ReplyDelete
  3. AnonymousOctober 10, 2016

    I just read your blog... twice.
    I love your little bug. Perhaps you can spin me around the block one day. So so cute.

    So sorry now you have a new pain. But perhaps it is gone now????????

    And yes.... I am the one that says....

    But you look fabulous!
    Your hair looks great!
    Your eyes are so pretty! They don't look sick.
    Your personality isn't one of a sick person!
    You are so strong. Encouraging. Fun to be with.
    Yep...that's me. Just one of the non-believers in your fan club. You just look so amazing!

    I try to get my head wrapped around the situation... But it alludes me. Perhaps I want it to allude me!
    Yep.... That's me.... In denial. Denial works, doesn't it?

    I want you well. I don't want you sick anymore. There. I said it AGAIN! I am putting it out to the Universe for all to hear. I want this all to go away.

    So, I totally connected to your blog. I'm definitely one of the people that say those things.

    Feel better my friend. Talk soon. Be well. Love you so much. Me! Susan

    ReplyDelete
    Replies
    1. JulieOctober 13, 2016

      Love you Susan, thank you for all your emails turned into blog comments!! :)) xoxo

      Delete
  4. UnknownOctober 11, 2016

    Julie,Sorry you are not feeling better.It is so like you to feel for others despite what is going on in your life.Seriously don`t over do the lifting and take your VW more
    Ron

    ReplyDelete
    Replies
    1. JulieOctober 13, 2016

      Thank you Ron for always checking in and commenting. Yes, life is challenging now, and I wish I could magically get back to who I was pre-cancer :((

      Delete

Subscribe to: Post Comments (Atom)

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.