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

Thursday, July 27, 2017

Caution: Boring Post Ahead

Hello 7.27.17


Indeed, life is always full of surprises.The minute we think we can predict what's next, life throws us an unexpected twist, a curve ball, a fork in the road, or decisions we didn't expect. Each day I wake up, look around, and giggle that I am still here. So grateful, often surprised, always wondering what's next.

Had my Darzalex 6 hour infusion last Tuesday July 18. Fortunately, all is pretty routine now on infusion days. I take 20mg Dex steroids when I "force" myself to get up around 7am. Hydrate, figure out what my "GI biology" is planning, and get on the freeway between 9-9:30. By the time I arrive at the chemo lab, the steroids have kicked in a bit, and I feel pretty good. Such irony to arrive at a chemo treatment lab feeling ok and spirited, and "not looking like a cancer patient". Almost always I meet up with "regulars" there, and secure a chair or bed by someone I know, or off in a corner so I can hibernate and read for the day, or until the bag o' Benadryl tries to knock me out.

 Here I am towards the end of the day,
looking blurry from all the meds.
Note the "200" turbo infusion speed.
We start the Darzalex at 100, then 150 then 200, 
as I'm on week #15, and all's going well. 

Met with my Dr prior to my infusion, and all my labs look awesome! See my 7.17.17 post for all my lab details. Since I seem to be doing ok, I "jokingly" said to my Dr that perhaps if I was ok enough to travel, perhaps I could take a handful of Zarxio injections with me to keep my immune system strong. Really, I was just joking, but she quickly agreed and liked the idea. So perhaps a trip may be in our future... just have to get Jim's leg better... I always marvel at all the amazing medications that heal us and help our chemistry be ok. I had so little health problems prior to 2008, 2009, that I just didn't realize all the meds out there, ready to "fix us up"! Thank goodness Darzalex, Pomalyst and Dex steroids are currently my magical elixir! 



And that's my short and sweet update. Lest you think all is glitter rainbows and unicorns, I of course have a list of side effects, crash days, blah days, swollen days, GI days, but I rebound on my Darza week off, and I'm beginning to accept invitations to fun events occasionally. I don't understand this life, and will never stop questioning why, how come, why me, how'd this happen. But I move forward daily, often in awe of how close I have come to "not being here", but reveling in how ok I am this month. I always think about myeloma eating me up from the inside out, and marvel at the powerful treatments fighting my cellular battle. It's mind boggling knowing it's these meds, continuous for 7 years now, responsible for keeping me alive, month to month. I reflect on my "hole in my head" lytic lesion of the left side, and external hard tumor on my right side. Crazy stuff right?!  But I am here, and I do what I can do, when I can, and most importantly, I count my blessings daily. Heck, how many terminal cancer patients on a triplet chemo cocktail can boast they go from the chemo lab to the horse arena, to toss hay and rake up "road apples" :)) 

My backyard view the other day! 
 Thanks for checking in. 
Hoping for good news and happiness in your life always


Ps, 7 years ago tomorrow, July 28, I was finally released from City of Hope hospital, surviving my 2010 Stem Cell Transplant! Here's my post from back then.


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


4 comments:

  1. Just checking in.. glad you're going to the horse arena to toss the hay!!.. still marveling with your strength, humor and coping mechanisms.. like I said.. boring is good..we go to Mt Sinai in NYC on Thursday..always that trepidation before these big appointments.. hopefully my husband, Jim, can stay on just the Rev.for now..been three years with assorted protocols.. hope your husband ,Jim,can get some relief for his legs...think of you often.. Karen.

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    Replies
    1. Hi Karen! Thank you so much for all your support and enthusiasm for my posts :)) Glad your Jim has had so many years of success with Revlimid. I did too early on, and who know, maybe, if need be, I may cycle back to it one day! Let me know how his appt goes. My next one is Tues Aug 15. Hoping you 2 are able to get out and about and "toss hay" too :)) Thank you again for all your support and friendship xoxo

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  2. Julie.. you truly are a special person..hoping for positive results on the 15th... Jimmy's numbers are stable .. but more concerned with the creatine which is steadily rising.. have to do more appointments with kidney doctor. He also has those horrid gastrointestinal problems and fatigue. But the Rev is keeping things stable..kappa is about 40.. never normal range..considering he was about 1100.. with spinal fractures..so we are grateful..but as you know. It's very very difficult three years on various protocols.. cytoxan..velcade. Dex..Rev. kyphoplasty..we are kind of at a low point..he had his off week and didn't bounce back too much. .but your blog and the sharing of your experiences continues to give us hope..and Julie..please know from the bottom of my heart ..how much you are appreciated and needed.

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  3. Hi Karen, thank you so much for your comments, and letting me know how much my posts mean :)) Keeps me motivated to continue to post my rants and musings :))
    So sorry your Jimmy is having such a challenging time :(( Revlimid caused me, as you say, "horrid GI" issues. I have several funny posts about almost not making it to my bathroom! Rev changed my life, due to the "expected" and "volcanic" reax for the several years! Check out my previous posts, such as

    https://juliesmyelomamoments.blogspot.com/2015/03/when-abnormal-becomes-normal.html
    and

    https://juliesmyelomamoments.blogspot.com/2015/07/that-fine-line-between-tradgedy-and.html

    Actually most of 2014, 2015 and into 2016 Revlimid kept me close to home and so challenged re eating. Looking back, I shouldn't have been so concerned taking Imodium, as that was a life saver for me!
    Ok, sweet friend, I will email this you too!
    Thank you for always checking in and caring as you do, and I hope Jimmy feels better and you 2 can get out and about! 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, 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.