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Thursday, April 27, 2017

Mystery Status!


Hello everyone-

For the first time in a long time, I don't have any dramatic news to report, as I'm waiting to receive my dramatic news! See, this was my very first week without Darzalez! Protocol for Darza is weekly infusions for weeks 1-8, then beginning with week 9, we get a break and begin infusions every other week. So who knows if myeloma is still being pummeled, or this treatment break may be fueling myeloma's power? I have no idea, as I was not "required" to do my regular weekly labs, since I had Tuesday off from Darza. Doing weekly labs has become like a "security blanket" for me. I really look forward to knowing what story my blood will reveal weekly...

But alas, I'm not chemo free, or on a full treatment break, as I began my current 21 day cycle of Pomalyst, a week ago. But with my looooow CBC's, we opted this cycle to alternate Pom 2mg with 3mg. So again, it's a wait and see how this reduced potency affects myeloma's powers. Additionally, since my myeloma markers from earlier in the month were so impressive, we've downsized Dex from 40mg per week to 20mg per week, with the option of 4mg on a day or two following Darza, if my side effects become overbearing. But I must confess, I haven't taken my friend Dex yet this week, as I packed a few appointments and events in this week, and couldn't figure out how to do these things, knowing the Dex crash would hit in the middle of my plans. I'm laughing as I write this, as it all seems so surreal and absurd!

Seriously, how crazy is it, living day to day, week to week, month to month, etc, having little control over what's happening to me with side effects, and not knowing if cancer is revving up, staying the same, or still running scared from treatment.  If I could, I would have blood tests weekly for the rest of my life, as that's really the only way I know what's happening internally with me. There are times when I feel ok, and think I am doing well, and think my status is stronger, only to find out, that's not the case. And the reverse, there are times when I feel lousy and think I must be headed in the wrong direction, and I find out that I am actually doing ok. No doubt myeloma, you keep me on my toes, with no room to relax. 

Tomorrow is the annual SCT - BMT reunion at City of Hope, where I had my SCT July 2010. I'm coming up on my 7 year SCT birthday-anniversary. Wow! And this event is huge. Hundreds, but looks like thousands, of people attend. It's a pretty big media event too. And our amazing doctors, nurses, hospital staff etc also come, to celebrate with all the patients. They give us big buttons with our survival months or years noted, a Tee shirt commemorating the event, and host a huge luncheon with speakers and entertainment. Very cool event. Couldn't be on a Dex crash for that, right!

 Here I am at my VERY FIRST 
SCT Reunion, April 2011
Look at that crazy hair growing back
after my October 2010 buzz!

Finally, adding to the list of unknowns, and compounding my "Mystery Status" is the outcome of my long overdue Skeletal Survey - Bone Scan that I FINALLY did this past Tuesday. So I took advantage of my little Darza vacay Tuesday,  and I went for the  bone xray scan. Yes long overdue, due to me. My Dr had scheduled me for that way back in December, but with not feeling well from crazy side effects of escalating myeloma (before Darza's success), I hadn't felt like doing it. I know, geeezzz, not a huge deal, but actually it was, as myeloma's chronic fatigue can be disabling. And I was having side effects from Velcade, higher dose Pomalyst and high dose Dex, etc... Anyway, I did the scan on Tuesday, so the waiting game begins. Will the scan show solid healthy bones, or will I be thrown another curve with bone lesions? Plasmacytomas, I believe is the official term.

My next Darza infusion is May 2, so I'll do labs on May 1. Whew! Status check coming soon! But my next Dr appointment isn't until May 16, to discuss EVERYTHING, and find out how I'm doing with this new protocol of a week's vacay from Darza, and to find out the results of my scan. You think I can wait that long for the results? Nope, you guessed right. I'll be pestering my nurse on May 2 to consult with my Dr in advance :)) I let you know, when I know, when all these myeloma Mysteries are solved...

No matter how ridiculous my situation is
Nature always reminds me how fortunate I am 
To Be Alive!

Hello perfect little ladybug!

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


  1. Good to hear you are getting to do somethings again. The start of a new trend!

    1. Hi Anonymous, thank you for commenting! Yes, hoping this 3x cocktail will give me a bit of my life back :))

  2. Hi Julie,
    It's been a long time. I've read some of your blogs and lots of things have happened since the last time I saw you. I know your busy as you've always been, but I got some great news I'd like to share with you. All your encouragement and all your support has always been cherished and will never be forgotten. Please send me an email whenever you get a chance at or call me if that is more efficient at 6614769342. I look forward to talking with you and I hope things go the best way for you.

    1. Hi Javier! So GREAT to hear from you! Thank you so much for checking in and commenting! I too cherish our years of "designing you life" and I am so very proud of all your success. I emailed you, and we'll be in touch forever. Congrats on all the amazing things you have created in your life Javier! :)) xoxo

  3. Hope you were able to enjoy the BMT reunion. Much to celebrate.. hoping the infusion went well today. Prayers for positive ..wonderful.. test result on the 16th.. your long island friend..Karen..

    1. Hi Karen, so great to hear from you, and thank you so much for commenting. I will also reply to your email, but I'm so happy you were able to post here too :)) Hoping all is great in LI, NY for you and your hubby! :)) xoxo


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
.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?”)


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.