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

Tuesday, July 26, 2016

Where I Was, How I Was July 2010 vs 6 years later- July 2016

Hello July 26, 2016

I'm still here Myeloma. You're still trying to get me to succumb. But I'm not going to, so there!

I've always been a record keeping, sentimental data collecting geek. I still write important milestones down on a physical paper calendar, and probably always will, no matter how cool technology becomes. I've always written down sentimental important personal and family milestones on some sort of paper calendar. Looking back, I'm really glad I was able to record a bit of my July 2010 Stem Cell Transplant journey via this blog and also my trusty old fashioned paper calendar. I didn't blog in as much detail in the beginning. I wish I had, but I didn't, because I felt pretty crummy 6 years ago this month. Really really crummy! Also, I was new to blogging and I just didn't detail all my "private thoughts" out there in cyberspace as I do now LOL.  I'm a different person now, then I was pre myeloma diagnosis.

This cancer journey changes you. Battling Myeloma for 6.7 years changes you. Treating and surviving cancer changes you. Staring death in the face every day, every treatment, every blood test result, changes you. I don't feel so private about my private journey any more. I feel so many can learn from us Myeloma-Veterans. I've learned so much and benefited so much from from all of Myelomaville's postings out there. I so appreciate everyone telling their whole story, detailing their medications and treatments, their blood status numbers, who they are and how they deal with Myeloma. Who we are beyond Myeloma is also so interesting. We all have so much in common regarding our Myeloma journey, that blogging about our crazy medical details, unwanted side effects, aches and pains, life challenges, treatment side effects and (of course) our GI symptoms is common... and sadly funny. We really are a remarkable bunch of warriors, battling this "invisible" monster that is trying to do us in. Writing to all of you, about my struggles and successes, is just cathartic.

Thank you paper calendar for reminding me that 6 years ago today, July 26, 2010, I bit the scary medical bullet and accepted a Picc Line to replace all the dysfunctional individual hand and arm IV lines, that blew up every other day due to the intensity of all the zillions of antibiotic treatments from my septic Hickman Catheter. Thank you paper calendar for reminding me that my Emergency Bedside Surgery to remove my horribly infected Hickman Catheter was July 14, 2010. Thank you paper calendar for reminding how sick I became after my immune system plummeted to zero from the intensity of Melphalan chemo. Thank you paper calendar for reminding me of how much I didn't and couldn't write down, because of how sick I was, how awful I felt and how I didn't have much energy, of much of me left at all. Minuscule energy just to survive and do basic tasks was all I could muster July 2010.
Thank you paper calendar for reminding me that I was released from City of Hope hospital on July 28, 2010. Thank you paper calendar for reminding me of my month long battle to survive my Autologous Stem Cell Transplant. Survive I did Myeloma, because here I am, blogging 6.7 years later.

I'm a sentimental hoarder in so many ways, and I'm glad I am. I have boxes and boxes, files and files of all my Myeloma paperwork and records dating back to December 2009. Yes I view everything online, and actually that's my preference. But I still like the physical paper version too. I have all my lab results and treatment receipts organized in zip lock bags with monthly dates. I just like that I can look at the paper results when I want too. I like having the symbolism of my paperwork in little plastic "hazardous chemotherapy" caution bags that Revlimid was mailed in. Now on Kyprolis, I just use regular zip lock bags.. but once in a while... I have "acquired" one of these gems... sshhh...

  

Ok, it's late and I am waning ... I will finish posting tomorrow. My recent labs are surprising...
As always, I cannot believe I am on this journey, and I cannot believe that Myeloma has not just disappeared from my life... but when I am tired and weak, always thirsty, have crazy side effects, and cannot do 3/4 of the things I did pre 2008, and I go to chemotherapy 2x per week, 3 weeks per month...  I realize I do have incurable cancer.

CHECK BACK and I will finish my story, AND POST MY CURRENT IgA and M Protein results. Interesting... not happy, surprising... and did I mention... I did accept beginning the higher dose of Kyprolis??

Thank you so much for reading and caring!!!
CHECK BACK... I'LL BE BACK!!

And I did this....




In the meantime, read these great articles:

http://www.myelomacrowd.org/myeloma-101-proteasome-inhibitors-work/


http://www.myelomacrowd.org/myeloma-101-more-on-protease-inhibitors-velcade-kyprolis-ninlaro-how-they-help-combat-myeloma/


How you help us you crazymaking Dexamethasone! 



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


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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.