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Saturday, November 3, 2018

Seriously Myeloma... Up Down Up Down, Good Bad, Good Bad...

Hello 11.3.18

Just a quick side trip from my usual "On the 8's Posts" as I just cannot believe my "Bi-Polar" life.
Seems like Myeloma loves to play tricks on me, giving me moments of normalcy, then ripping that quickly away :((

If you follow my blog regularly, you've experienced all the crazy extremes in my life. From debilitating side effects, illness and pain that tests my spirit beyond what I think I can handle, to fun adventures that don't fit the image of someone with terminal, incurable cancer. I just shake my head, take deep breaths, and try to accept and laugh at my circumstances.


Which brings me to this post, as October appeared to be mostly fun fun fun, with Myeloma in the rear view mirror, and nothing like my July, August, September, which were truly challenging months! ... Well, most of my months, weeks, days are challenging, but I've learned, that for me, PAIN is what brings me to "my edge". The insane side effects and backlash pain I experienced from Zometa, to the absurd bone, nerve, muscle pain (from perhaps Zometa triggering something?), or just all the myeloma lytic lesions, plasmacytomas letting me know they're there?, were all just so unbearable, bringing me to my brink... And then...suddenly, I'm briefly able to feel well enough to participate in a few wonderful events...then side effects, illness ambushes me again...

Yes, what happens in my life are unpredictable, brief moments of functionality allowing me to participate in "real" life. I can't control the timing of my medical dramas, and sadly, I have missed so many wonderful events this year, especially family, friend wedding events. Myeloma treatments, pain, and illness have ambushed me at the worst times. Then suddenly, inexplicably, the dark cloud passes and I'm able to participate in life. I can't control the timing of things, and I'm stunned when things work out, and also when they don't...

So after the last minute shocking ability to go on the cruise, I got sick. (Not too surprising, right?!) I was ok, then not. Fortunately, I recovered enough to participate last Saturday in Bark For Life, and be their featured speaker. I was not fully well, but ok enough, with the boost from steroids. Up Down, Up Down. Good, Bad, Good Bad... seriously ridiculous!
All seemed to be improving for me. My horrendous leg, bone, hip, etc, pain was ebbing and subsiding.. my headcold was slowly disappearing, and I braved up, and took 3 of the 8 prescribed Cytoxan- Cyclophosphamide on Monday, and had limited side effects from that...


THEN BAM! Wham! Backlash! While walking down my hallway on Tuesday, I coughed. Not a deep cough. Not a big dramatic cough, but a cough. I usually stop and bend to cough or sneeze, but this time I didn't... POP, CRACK, SNAP! I heard and felt a horrible, knife stabbing, twinge on my Right side ribs... I couldn't believe the searing pain, but I kept walking, doing some stretching and bending, trying to work out the pain. But the pain and tightness gripped me deeply. Fortunately, I still had the afterlife of 40mg Dex steroids in my system from Monday's Velcade and Cytoxan treatment day regimen, so I knew that was helping dull the pain and inflammation... but I knew "something bad" had just happened.

So when Dex began to wear off, PAIN moved in FAST. And every time by body wanted to cough, the searing pain was just unbelievable, unbearable. I've finally learned to start medicating quickly, not waiting to see how it bad it is. I'm now ProActive, not ReActive, as pain is difficult to get control of... So as I've mentioned before, I start with the lowest dose pain meds, to see what helps, so I don't kill off my kidneys and liver... but Low Dose just doesn't cut it anymore. I went back and forth with Tylenol, and Advil, to Flexeril to a 4mg Dex, with only little relief of the excruciating pain. So yesterday, my son drove me to Urgent Care, as I knew I needed to be seen. I've become such a "regular" there, it's not even funny.

Exam, Xrays, discussion of my complicated situation. Is it bone issues? Is it muscular, nerve? OMG, the pain! And the result, yep, another fracture, crack, and of course nerves and muscles involved too. The Dr meeting with me was very thorough, (actually, she may have been an NP), so she said she will consult with Radiology, and send me an email with more detail...  She offered me stronger meds and I accepted, but haven't used them yet, as yes... you know it... I fear new side effects.  But I think I will try Tramadol again, or maybe start with half a Norco, as regular Advil, Tylenol is a joke right now... oh, and the Pain Management Dr I met with last Monday gave me Gabapentin for the crazy leg nerve, Neuropathy pain... My medicine drawer is hilarious with all the bottles of meds~


In the meantime... suffer, suffer, suffer continues to be my middle name... but I am of course grateful for all the good times I am still able to have, all the amazing people in my life caring about me, and for amazing insurance that allows me to just show up and be treated in detail... Yes, perhaps 9 years of Myeloma ravaging my body is catching up with me...

Here I am at Kaiser Urgent Care
just before Xrays,
showing off my crazy bruise from my last blood test.
 And yes, I always toss a little make up on and fluff my hair,
as that just makes me feel better
no matter how awful I am.
I always try to find humor and light 
in all this crazy darkness...
I was in intense pain here... but-
"Fake It Til I Make It", is another motto of mine :))

Thanks myeloma for my crazy making, bi-polar life. Things are certainly never boring! But I would prefer less drama, and more calm please...

Up next on Monday: 40mg Dex steroids, Velcade shot, Cytoxan Cyclophosphamide pills... hmmm I'll be brave and take 5 this time... or should I be really brave and take the full dose of 8?? I wonder why it's not one a day, like Revlimid, Pomalyst?? Must be the all at once punch that makes a bigger cellular impact??..





6 comments:

  1. Julie, so glad you are able to laugh thru all of this. I don't know how I would handle it. You are truly an inspiration.

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    1. Hi Sheri, thanks for checking in, commenting, and your sweet words of support! :)) I'm sure you would, and do handle everything also. As I recall you're in the MM club too, or your family member? We just do what we have to do, to stay alive, and have a little fun along the way, right :))

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  2. Oh no, Julie. Ditto for what Sheri wrote. And yes, the hair and makeup touch up made you look beautiful. And you are beautiful, inside and out, not even MM can change that.
    Jan

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    1. Aww Jan! You are way too kind! I feel just the same about you. Beautiful, loving, strong, kind spirit! Myeloma is trying to bring us down, but we won't let it! Look at you "big sis" with all your years of survival beyond me! We are defying the odds, and will continue too for decades, right :)) And I have a funny story for you about my horses getting out last night!!! Thank you for all your kindness and support Jan!! xoxo

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  3. Julie, I am so sorry you are going through this! It amazes me that you are able to stay so positive through it all. You are an inspiration! I will try to remain as positive as you. I am scared for what the future holds for me, but I am just trying to focus on the present moment, and get out there and do my hikes and my concerts and have as much fun as I can. Also, spend lots of time with my family and friends. I am truly fortunate in so many ways, and I try to remember that every day. "Attitude of gratitude!"

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  4. Oh Julie I echo all the other responses.. I am so sorry you are experiencing such pain..and still look amazing!!!..it's Jimmy's week off from darzalex.. so we ate out with granddaughters..he's sleeping now.. I want to thank you for the MMRF donation.. my daughter was the number one individual fundraiser for the NYC run. .please rest.. recuperate ..heal..karen

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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.