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

Thursday, June 16, 2016

Good Blood? Bad Blood? Stable Blood? It's a Crazy Life, but still a Good Life

Hello 6.16.16 
Just love these numbers today!

Speaking of numbers... I won't find out my treatment status numbers until the end of this month. This next week is my chemo break week (yippee!), so I'll take labs mid week, then get back to Kyprolis infusions the last Monday and Tuesday of June. I meet with my Dr on Wednesday June 29 to consult. Will be interesting to see what myeloma has done this month, with my on-again, off-again Kyprolis/Dex schedule... Each month I get through a chemo cycle, I feel like I've completed a marathon. But a marathon that never ends. Cancer that never ends. Chemo that never ends.

I am constantly processing and analyzing how I am going to treat this monster for the rest of my life. Slow and steady, or more aggressive? Stay the course, or switch up meds as my numbers creep up?
My life has dwindled down so much, and I have so few days where I feel like doing much at all. I'm just so sick of feeling sick all the time. Such a strange way to live, considering how healthy, busy and full my life was pre-myeloma. Truly I am still mystified by my situation and abrupt changes physically, psychologically and professionally. Sorry I mention that all the time. But I go around shaking my head in disbelief so many moments, every day. 


 I take my Dex steroids on Mon and Tues and head to the chemo lab for my Kyprolis infusions. So ironic, that on cancer treatment days, I actually feel the best, since I am propped up on steroids. Crazy stuff. I sometimes even feel a bit "normal". That's when I really question my circumstances and wonder what in the world happened to me. But then, I am fully reminded of "what happened to me" on my lovely crash days, such as today, when side effects abound. But, it is what it is, and my motto has always been, "you can't control the things you can't control, so analyze it, process it, examine it... and move forward... always forward"... 

Even when I see my diagnosis in writing, which is always...
It's still so hard to process.. 6.5 years later...
Still so hard to process..

 Even when I'm hooked up to chemo along side my fellow patients-
It's still so hard to accept I have cancer. Can you imagine this life?
But, I just do what I have to do, with robotic acceptance..

 Here's my AMAZING chemo lab nurses-
Just love them so much! Beautiful ladies inside and out!
So dedicated and devoted to all us chemo patients.
Thank You for You in my life!


So not much more to report. 
I have cancer, incurable cancer. 
I'll be on chemo for life. If one treatment stops working, on to another one. 
Always processing my status, my treatments, my options.
My life has radically changed, but I have much to be grateful for. There is so much beauty in this world that I am still privileged to experience.

I may not be able to do much away from my home, but I still have "purpose" in life. Purpose in saving other lives. Purpose in nurturing and caring for little lives that come my way. 
Here's my most recent adoption project: 

These darling little chickies were hatched by a teacher friend of mine as a science project for her elementary class. Before they were incubated, I agreed to adopt any hatchlings. Here they are, just hatched, in their little incubator. The yellow striped one was born Sunday June 5, and the charcoal one on Monday June 6. Nature's miracles! 


Here they are one week later when they were brought to me. I set them up in a cozy enclosure. How do you like my idea of the little swifter duster as their surrogate momma! Just look at their feathers and wings coming in already!


Nature's instincts are just so amazing. These little chickies "just know" what to do. Instinct tells them to peck for food, drink water, snuggle together for warmth (yes I have a heat lamp for them!), even though they would "naturally" be snuggled under momma hen's feathers. These little chickies "just know what to do". So amazing to take part nurturing their lives! 
Cancer can't steal these experiences from me!
 Very imprinted on us humans already. 
So adorable!!


And so I move forward. Always questioning, but always grateful for all the wonderful things in my life that cancer can't steal away from me. Nature inspires me always.  




Here's a few interesting myeloma links for you-

An ocean animal may save our lives! Sea Squirt (Aplidin) Clinical Trial Results Are Promising for Treating Relapsed/Refractory Myeloma

So I'm thinking, if I do need to switch off of Kyprolis to something else... maybe to Pom? Pomalidomide plus low-dose dex should be a standard of care for patients with relapsed/refractory myeloma


Check out these wonderful, helpful, informative myeloma links. 
Whether you are "new" to myeloma, or a "warrior" with "battle scars" like me, or a family member, friend of a patient, a colleague, etc, these websites offer infinite articles of current, amazingly helpful myeloma information: 

Myeloma Crowd: Awesome updates and support
Myeloma Beacon: Myeloma news and updates and blogs and articles  
MMRF: https://www.themmrf.org/ 
IMF: https://myeloma.org/Main.action 

The Cancer MoonShot 2020 Program 
Cancer MoonShot 2020


Thank you Revlimid for saving my life for 5.5 years! Jan 2010 - Oct 2015 
Thank you Kyprolis for saving my life since Nov 2015 to now 6.16.16! 
And of course, I have to mention and thank my best friend and worst enemy Dexamethasone!  



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



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2 comments:

  1. AnonymousJune 29, 2016

    Good morning my friend, it's Theresa. Nice story on the new babies and very uplifting for you. My sister has a baby lamb name: dozer and it's very young. She talks to him, calls his name and of course " bah bah" and he runs after her talking lamb. Hilarious. He even watches TV and cuddles in her lap. I have it posted on FB under Frank Washburn. Take a peeks. Thanks for the update on you. Haven't heard so of course I was getting worried about you. Miss you my friend. We will talk soon. Take care and stay strong through this treatment cycle. Miss you- Theresa

    ReplyDelete
  2. JulieJuly 07, 2016

    Awww such a cute story Theresa! Thanks for checking in and commenting! We will get together asap during my break week. Miss you, and so happy to hear of your family updates too. xoxo :))

    ReplyDelete

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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.