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

Sunday, October 17, 2010

Remission Stats and Status

Hello Everyone- thank you to those that have written with concern that i haven't posted recently, and motivated me to update my blog :)

Fortunately and Unfortunately, I'm pretty much at a "status quo" :
Fortunately, very fortunately, I am in REMISSION and my Stats are good (below)
Unfortunately, I am still Neuropathically Electrofied most all the time!!

I've been trying to find an appropriate analogy to describe my crazy Neuropathy symptoms...
So here's what i've come up with for you:
At night while trying to sleep my HANDS and forearms "fall asleep"- ironically them being "asleep" AWAKENS me... my Hands and Fingers feel like heavy potatoes with tingling sprouted roots attached!
My FEET when I try to get up to move around are like flat wooden boards

Last month I would do laps around my house to get my circulation going
But seriously, who the helloooo wants to exercise at 2, 3, 4, 5 in the morning!!!!
So I stopped that

So now I just get up and shake my limbs VIGOROUSLY until I'm pissed off enough about my continuous interrupted sleep... and just drop back into bed, willing myself back to sleep... until I am sabotaged again

Typing this out made me realize the ridiculous ironies here:
My limbs fall "ASLEEP", preventing me from SLEEPING!
The BLOOD needing to be circulated to stimulate the nerves to lessen the tingling/burning sensations so I can sleep... is WHAT began this WHOLE drama ...
BAD BLOOD CIRCULATING WITH MYELOMA CELLS!!!!!!!!!!!!!!!!
aaarrrggghhhh!! this is so crazy for once healthy-as-a-horse-Julie...

Here's a totally October apropos visual analogy for you of how I feel:

Happy Halloween to me... I live in my costume 24/7  hahahaha!

And now for my vital Statistics that my Myeloma buddies would be interested in:
And I am in Remission.. or CR or Complete Response

Yikes, can someone please tell me what all this scientific data means in "Blonde English" !!??

And, on October 18, 2010, a little more than 3 months after my Stem Cell Transplant, I begin my friend Revlimid pill form Chemo again for "Maintenance Therapy". Whoohoo bring on the chemicals again and keep me Myeloma freeeeeeee for a long time so I can have more fun adventures like these:


Wiggies!!!!! They're trying to copy my slick moves!


Moms and Daughters celebrating success and farewells
Lucky me to have pals like these!


Thank you always for reading, commenting, supporting me and sending all your good wishes my way!!!!
xoxoxoxoxoxoxoxoxoxoxoxo


6 comments:

  1. Yay on the remission, boo on the PN. I didn't realise that when I wake up with that pins and needles in my hands and arm(s) that could be PN - well you live and learn - fortunately.

    Oh, and I used to work with someone whose surname was Tingling - I always thought it might be quite exciting to be Mrs Tingling but maybe not! ;D

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  2. Lots of love Julie. Keep those great stats! So happy that you are in remission (and keeping the maint. of it with your Revlimid)!
    Can't imagine my life without you and so glad I won't have to. :)

    xoxo!
    RR

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  3. You have to pursue writing comedy. That sense of humor of yours is one of a kind. As always i am in awe.....looking forward to the next exciting adventure of Kick Ass "on the Myelo" Woman.
    Love,
    Beryl

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  4. Hi Julie, stopping by to check in on my friend. SO happy you are in remission....hoping the other systems go away!!! Thanks for all the fun updates.........humor goes a LONG way!!!! Love.
    Gay

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  5. Really glad you are keeping your humor.The pictures add alot.Tell Alissa she looks real sharp.Keep smiling (I know you will) and know
    this too will pass.You truly deserve all the wonderful friends you have!!
    Ron

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  6. Sorry to hear about the severity of your Neuropathy. My feet feel like they are on fire and hurt to walk on them. However I sleep soundly all through the night probably as a result of the pain killers which all seem to say the side effects are drowsiness and sedation. Well they got that right as I often feel like a junkie. After a few months of this either I have learned how to deal with pain or figured out a regime of spreading out the multitudes of pills to limit the pain. I'm impressed with your website and the energy you have to keep it going and interesting. You mentioned loss of energy - yep and in my case I can add apathy which I sorely miss. Keep up your humorous commets and good spirits.

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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.