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

Monday, December 26, 2016

I'm Well!... I'm Sick... I'm Well... I'm Sick... I'm Sick of being Sick

12.26.16

Hello to my last post on the 6's. Wow! Can you believe it?! Just hit me as I typed 12.26.16! My "last" 6's post. I made it through year 6 of Myeloma and my 7 year diagnosis anniversary is just around the corner. It really hit me.. this will be the last post on my 6's theme (unless I make to 2026 lol!).

Numbers have become such a BIG deal to me since my diagnosis. For 6 years, they've determined and controlled my life. For 6 years, monthly, weekly numbers have told my internal tale of treatment success, or not. Numbers have become my enemy and my friend. Year 6 flew by, with early treatment success with Kyprolis, then suddenly, myeloma said, Oh heck No!, and I had to say goodbye to Kyprolis and hello to Pomalyst last month. C'mon Pom! Let's kick myeloma's butt for 2017!


November and December 2016 have been really challenging for me mentally and physically. I was always such a "well, healthy" person, and it's really really really difficult for me to be a sickie. I just hate feeling so depleted, so exhausted, so fatigued, so yucky, so sickly. I want to run, play, ride, laugh, engage, create, give, contribute, go, do, play, ride, ride, ride... but my reality is, I can't. Literally I cannot. My body doesn't let me. My blood levels are either so diminished and depleted, that fatigue disables me, or I am sick. Sick from myeloma's head to toe invasion, or sick with a bad headcold, or sick with pinched nerves from coughing from the bad headcold. Sick from another illness, and another one. Or "sick" on my Dex steroid "crash" days. I'm sick more than I am well. This is not me! I should be full of energy, plans, engaged in life and people and ideas. Engaged in doing, going, playing, contributing, laughing, living, seeing, giving. Whaaaaaat happened to Julie the "energizer bunny". Sadly myeloma ran my batteries out.

In the beginning, I really "convinced" myself that I would be "different". I would do some chemo, do the stem cell transplant, do some maintenance chemo, and onward life would go to infinity, and myeloma would leave me alone for a looooooooooong time, and I would have my life back. Well, that did happen, to some degree. I did have early treatment success in 2010, 2011, 2012. I was able to function as a pretty good fraction of myself (or at least pretend to, lol), then 2013 brought myeloma roaring back when we tried taking a break from (Revlimid) maintenance chemo.

So for 3 years now, 2013-2016, I have been back in active treatment, Non Stop. I'm exhausted mentally and physically. I'm worn out from the ups and downs. I'm worn out from the "what if's", the wondering when each treatment will stop being effective, the exhaustion from all the physical side effects, and the mental toll it takes living with incurable cancer.


I've always been an analytical, "Why" person, and I can't stop asking myself "Why Me"? "How come"? "What caused this"? I can't stand the "not knowing" how myeloma happened, taking over my entire being. I am teased by a couple "good days" per week while on Dex steroids, then tormented for days with lethargy, GI unrest, unbelievable physical fatigue, headaches, neuropathy, random aches and pains, blurry vision, and overall physical dysfunction. Yes, I FORCE myself to be a semblance of myself, as I HAVE to. I have too many depending on me. I am the "rock" of my family psychologically, as that's just who I am. There are animal chores that HAVE to be done. Yes there are many days I can barely function, but still function minimally to get it done. And yes, there are more and more days now where Jim and I need help, and our kids and others are needing to help us more regularly then ever...  On beautiful sunny days, those days after it rains and the earth is refreshed and cleansed, and the sun shines warm and nourishing... those are the days I am most sad and overwhelmed about my circumstances...

So I planned my weekly 40mg Dex steroid dose to coordinate with Christmas and New Year's. I've fully learned the amazing perk and pump up Dex gives me, and I take full advantage of it now. I've learned how to make Dex my "friend" before Dex becomes my nemesis. So I took Dex on Dec 23rd and 24th, knowing I would get the lovely "kick" through the 25th. Sure enough that worked, but late Christmas night, after doing way too much, and trying to be way too normal, I bit the dust. And I bit the dust all of the 26th, and thought I was getting a headcold again. I'm finishing this post on the 27th, as I finally feel a bit better now. But so fatigued. So incredibly fatigued and depleted. If you've never experienced low WBC's and low RBC's, it's difficult to put into words the physical exhaustion and depletion one feels. I could just fold up and be a slow motion blob all the time, but I can't let myself...

I pulled myself together late last week, had a few good days before and during Christmas and managed to have some family fun. Our kids "kidnapped" us on Thursday, for our annual holiday tradition at our local nursery. We've been doing this since the kids were babies, and it meant a lot to me, that I was able to go at the last minute. It meant a lot to have a few moments of pseudo normalcy, reminiscent of the past.




 



Hoping all of you had a wonderful Christmas and Hanukkah with your families and friends! I hope you were able to celebrate your lives, your blessings, and all that makes you happy and fulfilled.

I'll be back on 12.30.16, reflecting on my 7 year diagnosis anniversary!!!
Thank you for reading and following my myeloma story.


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



4 comments:

  1. Nice to hear you were able to do a little bit of traditional family thing's. Tyler told me at 13 yrs. he was too old to cut down the Christmas tree and now he misses it. I'm sadden to hear of all your pain throughout your body. You have fought and held on for so long. I know you don't post some thing's because it would serve no purpose. Nature gives you a sense of hope and renewal, rain washes everything away, a fresh start. I hope that your Christmas was special with your family. May you keep up your inner peace, keep smiling, keep laughing even at the dumbest thing's, and as far as the chores go: I hear you on that one, "I must do them, must get up". Take care my friend. May you receive a miracle in 2017, God's blessing and remember you are always in my heart. Your friend, Theresa

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    1. Thanks for being such a loyal follower Theresa! Thanks for always commenting and letting me know you've read my rants! I look forward to our 2017 date on one of my steroid/good days xoxo

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  2. Dear Julie.....I'm so sorry about the ever present challenges in your life. I am so happy that you had a small, but special, reprieve with your spontaneous trip to Green Thumb. I love that you got to enjoy that with your family! You mentioned in your post that you need more help now.........is there anything I can do for you? I mean that. I love you and pray for peace and serenity and a break in the whole being/feeling sick thing!!! Gay

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    1. Hi Gay! Thank you so much for always checking in and letting me know you've read my rants :)) Yes, want to come rake horse poop, change my 19 yr old cat's diapers, do dog poop, chicken poop, bird poop etc??!! Ahaha Just kidding, would love to just see you. Email me dates that work for you in Jan, Feb 2017 and we'll get together on one of my steroid/good days! 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.