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Wednesday, February 9, 2011

Battle of the Whites- 2.9 on 2-9

Hi Loyal Blog Followers!

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

Jim shops -- I slice and dice

So after being diagnosed with Myeloma, I reinvented healthy eating!
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!

I was motivated to make Caprese after watching the food channels while at City of Hope

So why am I whining now... well, I'm really not... I'm just a little pissed off that all my efforts in eating and drinking so well, everyday, are being sabotaged!
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

Jim keeps me and Alissa stocked with our fav yogurt

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!

Fun to eat corn again after having my braces off a few years ago

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 :)

4 comments:

  1. The myeloma cell is an immune cell. Treatment that kills the myeloma will tend to be hard on the immune cells also. This is one of the controversies of maintenance treatments. Try to reduce your exposure so you don’t call on your white cells to fight a big battle.

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  2. As a current weight watcher, I LOVE your saying "is a moment on the lips worth a lifetime on the hips?"...will have to share that at our next meeting! Back to MM, I love Jerry's advice and you certainly do have much to celebrate in other areas. Still, we'll pray that 2.9 comes up over time with all your efforts!

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  3. Wait!!!! Your white cells don't work like your hemoglobin. They fluctuate ALL the time. They even follow daily rhythms and are higher in the afternoon than in the morning. This is nothing to be bummed about. Tim's white cells are usually below normal and he has been in a stringent complete response for over 2 1/2 years. Transplants do a tune on your marrow, as does MM in general, so it's not uncommon for good blood counts to stay below normal or on the low/normal side. This last dr. visit, Tim had his appt. and CBC later in the afternoon and his white counts were normal.
    Next day it could be low. That's how they work.
    Don't despair. They are probably the fastest changing level in your CBC.

    ReplyDelete
  4. Julie,It is hard to imagine you ever being chubby!!Glad you are eating more and healthy foods.I know how important your students are to you-so glad you are encouraging each other.
    continue on your comeback.
    Ron

    ReplyDelete

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.