Tuesday, February 22, 2011
Just have to note the date 2 - 22 - 11
For those that know me, you know why this date is symbolic to me!!!
For those of you that randomly stumbled upon my blog, or just know me virtually... my birthdate is 11-22
I've decided since I am so VERY FORTUNATE to be in Myeloma Remission, and GRATEFULLY I don't have any huge, dramatic news for you as I did in 2010, I will now write blogs on symbolic or interesting numerical dates.
I've always found patterns in numbers fascinating, but they tend to stand out even more now--
Perhaps in my next life I will be a mathematician, engineer, computer programmer, statistician, etc LOL
So for now, I just wanted to note this interesting date and let you know that I am doing ok :
I am on Cycle #5 of Post SCT Revlimid maintenance
I am on .5 mg of Revlimid, 21 days on, 7 days off
And so far, so good!
I only occasionally have a rash now
I still have crazy symptoms of Neuropathy... but not nearly as bad as when it attacked me in late Sept 2010 thru Oct, Nov, Dec. It began to lessen a bit in Jan and Feb...
OR have I just gotten used to it and learned to function numb, tingly, achey, and with weird nerve burning sensations???
I do feel tired and fatigued all the time and don't sleep more than 2 or 3 hours at a time... this is wearing on me... and I debate on whether or not to ask for some sort of "medical sleep assistance" ... any recommendations???
On the up-side of continuing Revlimid-chemo...
There must be some sort of hair-growing properties to it, as my new hair is growing like crazy... albeit dark and curly... but growing, growing. Hubby Jim wants to start on it, so he can grow hair. Funny when Jim jokes and says to friends... "O, I'll be starting Julie's chemo soon...." they of course look shocked and wonder what's up... then Jim quickly relates the hair-growing properties of Revlimid.
Grows eyelashes too as my original blonde eyelashes are once again long!
Funny how many people think my new dark "poodle do" is my ORIGINAL REAL hair and are so surprised to learn that I was always "Goldilocks" and the SCT chemo (Cytoxan and Melphalan) sure changed that for me!
So I quickly point to my still-golden eyebrows and golden eyelashes (when I don't have mascara on), and draw the relationship for people of how to tell a person's REAL hair color...
Which I did at a college staff meeting, by saying... "you know how you can tell a person's REAL hair color?????? (drum rolllll.....)
By One's EYEBROWS ... NOT the "Other Way" you've all be told" ... hahahahahahaaaaa
Great reaction from my colleagues thank you very much!! Yes, I'll be hittn the comedy circle soon!
And I will leave you with this amazing clip from the King's Speech movie... so very relevant in my life in so many many ways ... but that's an entirely different blog!!! For those of you that might be offended by swear words or are at work viewing my blog or have young young children around... you might want to lower the volume a bit...
Or not... LOL :)
Wednesday, February 9, 2011
I sure appreciate your continuing interest and support of my blog musings!
I write because you've told me you look forward to my postings and updates, and worry when I don't. Thank you so much for caring!
And to those of you I don't know personally, but I've met virtually, thank you for your comments, support and recommendations. It's really awesome knowing this giant internet cyberspace is not so distant and anonymous afterall :)
And to those of you that are fighting the Myeloma battle along with me, I hope my postings are useful and interesting to you and I wish you the very best as you fight your fight with this crazy cancer that somehow invaded our blood and sabotaged our bodies...
Speaking of sabotage, I feel I am battling daily with my body to make good blood
I'm kinda sad to report today 2.9.11, that my White count has dropped to a 2.9
I've worked so hard to raise my Whites from 2.8 at MM diagnosis
And then battle back from Zer0 after Melphalan chemo decimated all my blood counts
I was so excited that many of my counts were normalizing in January, and my whites rose to a whopping 3.4 last month!
See...what I mean by working hard, is probably laughable to some of you...
I'm just not a Foodie!
Each day is a challenge to me to ingest somewhere near all the good foods, from all the food groups I need, to support my new Stemmies in growing good stuff to out-power the bad stuff
The irony is that this battle is not new to me...
After finally learning how to manage Calories after being diagnosed with Hypothyroidism in my early teens, I mentally tallied everyday what I ate, so as to not get FAT -- (I was chubby teen :)
I prided myself on eating good things to feed the machine
I don't drink soda or alcohol
I am a meat minimalist
I eat to Live, rather than live to Eat
And I used to ask myself ... regarding treats and junk... "is a moment on the lips, worth a lifetime on the hips" LOL
I owned the food rainbow almost daily
I made sure to eat from all the food groups even more vigorously
I drank more water in a day then I used to in a week
And yes it all worked... my Anemia at diagnosis disappeared
My blood levels improved dramatically, and I kicked Myeloma's butt with the help of Revlimid, Cytoxan, Melphalan and a Stem Cell Transplant!
But I know, sabotaged for a good reason, as being on Maintenance Revlimid (.5) is continuing to keep Myeloma off my personal planet, but it also drags my Whites down with it
And, perhaps not the smartest move... I've returned to work... to the scary world of gerrrmmmmyyy students- but wonderful supportive, caring,fun, interesting, fascinating, goal oriented students!
Yes, I really am grateful for my Remission and current "not My loma" status!
I really do understand that going from 3.4 to 2.9 is really not that Big of a Deal
But dang it.. I thought I might be closer to 3.9 than 2.9 after all this good eating and drinking I'm doing!!!
And I'm not referring to my GPA hahaha
Alrighty, until next time... Cheers to Water, Orange Juice, Yogurt, Greens, Greens, Greens, Rainbow Veggies and Fruits, Juices, Tofu, Nuts, Beans, WWBread, etc ... and thanks to the changes in my system, I seem to be able to not have allergic reactions to Salmon, Tuna and meats anymore!
And gotta loooove the variety of Flavors of Ensure for Dessert!!!!!
Looove to all of you! Gotta go eat and drink!!!
And yes, all the above pictures are from things I actually prepared, ate and fed my family :)
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.