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Sunday, May 10, 2020

What Happened to my Life

5.10.20
Hello May

(I'm, writing this several days before posting, so not sure I will even post these thoughts...
Ok I will, as no-filter is my middle name :)


I shouldn't whine and complain, but I'm just so sad...
I have so much to be grateful for, on so many levels, compared to so many, especially in these crazy Pandemic times, but I lost my life and future dreams long before CoronaVirus changed the world.

I look outside my window and see such beauty 
Beauty Jim and I created over 38 amazing years
Beauty we were supposed to enjoy, not be challenged by
I look outside and see our past, our current, and wonder our future
I see Blue skies, green trees, green lawn, happy plants and colorful flowers
His roses, so loved and cared for, now "my" roses needing "my" care
So much upkeep to keep everything beautiful, alive, thriving, clean

I look outside and see my horses hanging out in the sun, swishing flies
I see my horses there, just there, and I remember the life we used to have
I see my horses out there, and remember the times I could "just go out there", just ride, just hang out with them, hang with the kids and adult friends, minus medical challenges
I look outside and see decades of TLC invested in our ranch
I look outside and see how much there is to appreciate and enjoy
I look outside and realize how much I cannot do any more
I look outside and realize how limited I am
I am just so depleted, so exhausted mentally and physically
I realize how much Myeloma has limited my life
Limited my ability to do and enjoy as I used to, as I always envisioned I could and would

I look outside and know I must continue on for the humans and animals that count on me, rely on me for Everything...
I know how much Myeloma (and Alzheimer's) has changed me now
I'm not the girl that started writing this blog in 2010


Physically, my head hurts
The base of my neck hurts
Headaches are non stop
When I sleep, I feel like my head is made of cement, and I am sleeping on bricks
I dislike taking pain meds as I've always tried to work thru pain and I worry about the additional impact on my vital organs
But I've had to take Tylenol, Advil several times a day just to take the edge of the pain, just to do the minimum, of the maximum I want to do
Dex Steroids Save My Life! They relieve so much of all of this. Today I feel ok, finally, I don't hurt so much. Dex Steroids Save My Life on so many levels.
Remember... Myeloma Hates Steroids!

But my immune system is always so low, stealing all my energy and dreams of doing and the things I want to do, and all the things I saved for "later", for when I retired, and thought I would "own my own life" ... ha! Such a stolen life in so many ways...

My treatment crashes last longer now, and I am spending more time in bathroom with surprise side effects. I hate GI side effects, I hate pain, I hate living wondering what will happen each day to me that Is Out of My Control. I used to be so healthy. This makes me so sad. I used to be so healthy. What Happened. Why did my body sabotage me? Why me? Why was my life stolen from me? Whine Whine Whine, Sad Sad Sad.... I seriously ask for so little, want so little, just want to enjoy nature and our home and our animals, and all the humans in our life. I just want to enjoy life pain free. Is that too much to ask. I'm tired. Tired of being tired. Sick of being sick. Done with Challenges... ok Julie, shut up and move forward. I know, I am very fortunate! Going on 11 years with Myeloma, and I am still functional on many levels...


So 5.10.20 was Mother's Day, and I hope all my Momma friends and followers had a wonderful day celebrating YOU and all that you have done for others as a Mom. Yesterday was a bit sabotaged for me, as Jim's brain functioned on a more active level yesterday morning, and at about 6:50am our house alarm started SCREEEEEECHING, abosolutely scaring the $#!% out of me. I jumped out of bed begrudgingly as I wasn't sure what I would be finding in the family room, where Jim sleeps in a chair... that's another long story I will tell if you'd like to hear...

Long story short, he had gotten up all by himself, walked to the door a few feet away WITHOUT his cane or walker, and opened the door a little bit, setting off the alarm. Most of me wasn't happy, as I'm soooo very sleep deprived, part of me shocked at his mobility, a little bit of me was incredulous and happy for him. But the part of me that is sleep deprived, achy, tired, hurting, frustrated, etc, and a Cancer Patient that never really gets the "luxury" of "being a cancer patient"...  reacted in a not so "adult manner". I let him out alone, and said sarcastically.... "ok, you woke me up early, scared the crap out of me, and here you are, with your brain telling you it's time to get outside and feed the horses, just like you used to".... "Great for you Jim, if only this was real..."but I'm not going out there at 7am!" "Gooo, just go if you want to, since your body is so ok today", good for you"... Happy #%&#! Mother's Day to me"! I sighed, cried, and started to video his precarious walk out to the horse corral. Not his fault, he can't help his brain-body sabotage either. I hate Alzheimer's more than I hate Myeloma...

Yes, bad me... but I'm sure y'all can understand my frustrated, overwhelmed, exhausted emotions.

So I filmed him as he slowly, actually somewhat solidly made it to the horse arena, where THANKFULLY our gardener (who I'd hired a few years ago to help with the early morning horse chores, was already out there with his helper), noticed Jim, and immediately went to him. I could tell how shocked he was! I knew he was looking for me or Jim's caregiver, but we were no where to be seen or found LOL. Eventually Antonio came to the porch and got Jim's walker, and Jim safely made it back to the house, thank you Tony! Me, still shocked, frustrated, happy, sad, a bit angry, so I had a meltdown with this in my face reality of all the challenges I must deal with daily, with my cancer situation, and Jim's Alzheimer's. Maybe I can upload a video from this insane brain event. No doubt, Jim keeps defying the Alzheimer's odds. I'm happy and so sad for him...

I have a BIG DECISION oncology appointment Tues, May 12, so I will let you know my current Myeloma lab status and what decisions my Dr and I come to regarding changing up my chemo regimen next week. Did I mention that last week I only did the 40mg Dex steroids and 400mg Cytoxan Cyclophosphamide. And Monday (today), I only did 40 mg Dex steroids, as my Dr wanted me to "clear my system" for the new regimen of Elotuzumab Emplicity and Pomalyst...
Oh boyyyyy, here we go.... Ughhhhh

Ok, I will update you on my next post, 5.20.20
Lots going on, chemo changes May 18, MRI coming, head skull neck pain from myeloma lesions, tumor, mass.... oy!

Thank you for reading and caring and posting hellos :)) Stay well and strong on all levels. It's a job, isn't it :))






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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, 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
B-12
.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.