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Wednesday, January 6, 2016

It's 2016! Hello to Posts on the 6's

Happy Happy New Year Everyone!
1.6.16
Hello number 6
2016 brings me to 6 official years of battling Myeloma. 6 years.
6 + 6 = 12
Yep! 12 months of posts on the 6's coming. These number correlations in my life never cease to amuse and amaze me!! And how 'bout that 6 in my age too.
It's Wednesday 1.6.16 and already 2016 has started out dramatically and symbolically for me. Monday, just after the New Year's holiday weekend (not that I did anything remarkable), I had my 6th, yes sixth!, Bone Marrow Biopsy. Ugh and Ouch. What a way to begin the new year right?! I have a love/hate relationship with BMB's, like all cancer patients do. They are incredibly painful, yet they are so incredibly informative about our "exact" cancer status. So yes, I brave up, shut up and just do it. I often think about "pre-gaming" with pain meds, or asking for "knock out" drugs, but then I just breathe deep and go with it. I'm so tired of being STRONG, but so used to it. Just my nature. No choice.


So at 1:30ish I had the procedure done. Yes my kind doctor numbed my lower hip area as much as she could, and continued to, as I felt incredible pain. She was swift and accurate and calmly talked me through her every move, which I greatly appreciated! My two nurses assisting her were wonderful and caring. The pain, the drilling feeling, the pounding feeling, the coring/cutting into the bone feeling,- it really hurts. I can't accurately describe it. Bone pain is different than any other pain. It's truly amazing what one can "get used to"...


BMB's are always just so dang symbolic for me. They remind me I really do have cancer. They remind me and confirm to me, that I am sick. They remind me how out of control I am of my body, my life, my situation, my body's bio-chemistry, and my options. I don't cry much over my diagnosis, or my life's circumstances, or my status. But I do cry during this procedure as it's just so dang symbolic! I cry at the pain. I cry at at the "why". I cry because I can't believe what my life has come to. Then I take deep breaths, breathe deeply, talk my self silently through it, bite my lip, brave up and it's over. I wipe my tears away, and move forward. I thank all of them for their professionalism, kindness an caring. And then I'm off to blood tests before my 2016 Kyprolis infusions. Boom. Bam. Boom. Bam. You're a cancer patient Julie. This Is Your Life.

I walk the hall to the blood test lab. I've just had a frikn Bone Marrow Biopsy. I hurt. I hurt mentally. I hurt physically. I walk the hallway to the blood test lab. My diagnosis, my procedure, invisible. I smile. I nod. I have shoulder length blonde hair now. I wear make up. I look "normal". No one knows my story. I don't know their stories. I have a medical ID bracelet on. My diagnosis, invisible. No one knows what I just endured. No one knows I have terminal incurable myeloma cancer. I smile. I walk into the blood draw lab. I offer my arms to the needle vampire. I see my burgundy blood. I visualize the cancer cells in my blood, in the vile. I wonder what story my blood will tell today. I walk the hallway back to Hematology Oncology. I chit chat with the nurses, I smile, I thank them. I suppress my feelings. I take my seat in an infusion chair. I look around me. Every chair has a cancer patient. Patient patients hooked up to IV's receiving dangerous chemicals that are so ironically life saving. Life extending. Death preventing. I'm sore. I hurt. I smile. I "fake it, til I make it". First Kyprolis infusion of 2016. I love you Kyprolis. You ARE saving my life! My medical team is saving my life. They are all amazing, and I appreciate them so very much! Hook up. Suck it up. Smile. Grateful. Appreciative. Shocked. How'd it come to this. But I am here. I had yesterday, I have today, I hope for tomorrow!

What I Wished I was doing
Rather than What I was doing
What I dream I Might do one day
6 Kyprolis infusions per month, 6!

 Some where... over the rainbow... 
Somewhere went my life


What would that wish be...

Where will 2016 take me, take you?


Breathe, Smile, Inhale, Live. Life. Fully.
Don't wait! Go. Do. Be. See.

Make 2016 an amazing year!

So many unknown roads
in a cancer patient's life

I am truly grateful for my 6 years. I've learned so much.
I've seen so much, I've felt so much, I've endured so much.
I am 6 years older, wiser, aware. I am a 6 year survivor!


To. Be. Continued. On. The. Six's 



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


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4 comments:

  1. AnonymousJanuary 07, 2016

    Julie, the BMB sounds so awful and I don't know how you can do it without being knocked out.... WOW. I was really looking forward to the 6's and I have read the last blog entry everyday so far. I love the list, and I think it's going to change my attitude towards things. I am looking forward to the little things.... I want to say, "yes" more this year and I am looking forward to your blogs. love you, Madonna

    ReplyDelete
    Replies
    1. JulieJanuary 12, 2016

      Thank you Madonna for being such a fan! I love my list too :) It was really spontaneous. I think I will post it again as a reminder to me and everyone else. Thank you for all your continued encouragement, support, love and your amazing uncensored pottie mouth! :) xoxo

      Delete
  2. LindaJanuary 17, 2016

    Even we caregivers have a hard time imagining what those BMB really feel like...ouch to the max! Looking forward to your year of 6's and all that you will be able to create from it! Keep up the good vibes and yay Krypolis!!

    ReplyDelete
  3. JulieJanuary 20, 2016

    Thanks Linda! And I'm so happy you updated your beautiful blog! Congrats again to 40yrs and EZ's treatment success! wow! so wonderful!!! 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.