Sunday, September 19, 2010
And I ache like I have a fever 24/7
I hesitate holding a glass now as I involuntarily DROP things
I do laps around my house a night in a losing attempt to rid my extremities of the electifying buzzing, pain, numbness and pins and needles
Anyone up for walks between 2-5 AM??? LOL
And I was presumptuous enough to think I escaped chemo-side-effects! Gaahhh! go me!
And, adding insult to injury - - I really have lost most of my original hair and now just have some lifeless whispy strands left... but after head inspection, my family reports that my "new" hair is coming in...
I had Alissa take pictures of my riduculous head and "hairdo"... and I am considering posting these pictures... quite the entertainment for you I would think.... hahahahahahahahaaaa
But on the upside of this........ my style is a definite "wash and wear" ! Be jealous girls ----- no maintenance, no blow drying, no styling necessary !!!! And - - no more Julie's trademark "Glue and Go" mini-bee-hive -poofy -clipy -do!
Be sure to check back soon, as I may just post a few pics of my crazy new cancer "do" ...
If I can get some pain and buzzing relief to be computer functional!!! aarrrrrrggggggghhhhhhhhhh :(
Thursday, September 9, 2010
Well I spoke too soon (on my previous post) ... eekkkk I have been attacked by the lingering affects of Chemo and the millions of medications that I was, and am on ....
I now have (what i am calling) the P P effect....
More to come when I actually have use of my extremities and it doesn't feel like I have myself plugged into an electrical socket!!!
Sunday, September 5, 2010
THANK YOU! THANK YOU! THANK YOU! THANK YOU!
TO ALL OF YOU... FOR YOUR AMAZING, SWEET SUPPORTIVE, HELPFUL, ENCOURAGING, FUNNY, AND LOVING SUPPORT DURING MY MYELOMA ORDEAL!!!
(Sadly it's not over-over, and never will be, but I made it to the top of this myeloma mountain milestone for hopefully some time!)
As I am now feeling better each day, my goal is to write you back personally :) I think I have almost all your email addresses or FB. Your unwavering support and knowing your were following my blog, sure helped save my life!!!!
Look out for the "new" Julie... a bit sassier, a few re-arranged priorities and a new appreciation for food and water!!!
SEPT 5 (exactly 2 months post-stem cell transplant ! WOW!
(PS- thank you Lori for the chaperoned step back into society, protected by you and my new "do" lol !)
Helpful Myeloma Links
- American Cancer Society- Multiple Myeloma
- American Society of Hematology
- Ask Dr Durie
- Cancer Therapy Advisor - MM
- Chemo Care- Drug definitions
- Dexamethasone Steroids
- Health Monitor Magazine
- International Myeloma Foundation
- LLS- Myeloma
- MM resources
- Multiple Myeloma Research Foundation
- Myeloma Beacon
- Myeloma Blogs
- Myeloma Central
- Myeloma Crowd
- Myeloma Symptoms
- Patient Power
- Support Groups
- Understanding Multiple Myeloma
My Story... How my MM was diagnosed
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!
My initial chemo regimen:
Pill form Chemo= Revlimid (10mg, 15mg capsules)
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral
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?
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?”)
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.
The antibody made by myeloma cells can harm the kidneys. This can lead to kidney damage and even kidney failure.