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Tuesday, June 30, 2020

Same Story, Different Day, Always Drama

6.30.20

Hello Friends :))

Yep, Same Story, Different Day. What a story it is, what a challenge it is everyday. Life just didn't pose all these crazy challenges for me, us, our family back in the day. Yes I know, life changes all the time for everyone. But our story evolves on a level CRAZY daily. Yes, we all change mentally and physically daily. But I worked so hard to NOT HAVE DRAMA in my life, and now that's all I have. Why? Why Life, are you doing this to me. Truly, I am not "doing this", or "causing this". I am so careful and cautious with how I live my life, and so are those around me. I've never been a "risk taker", and always thrived on safety, security, happiness and moving forward in positive, thoughtful ways. We always took measured steps in most everything we did, just to avoid drama. Now drama seeks us out!


Everyday I wake up, wondering WTF will happen to us today! I'm still the positive, optimistic gal I always was, but "I know" things will never be calm and predictable again. As I've written before, I specialized in calming drama for everyone else in my personal life and professional life. I was a problem analyzer and solver for those that sought my counsel. But now so much of my life is totally out of my control in ways it never was before. I didn't "cause" Myeloma to happen to me. My body biologically sabotaged me for whatever reason I will never know. Jim did not "cause" Alzheimer's to happen to him. His body sabotaged him. We'll never know why this happened, why our bodies changed on a biological, cellular level, but I do know, we did not do things to "cause" these awful deadly illnesses that have completely taken over our lives. Just so so sad...

I've met many "risk takers" in my life and am fascinated with how they think and the challenges they take on, and how taking risks invigorates and energizes them. I think of extreme outdoor sports, people that just pick up and move to another state, another country, people that change careers often, travel all the time, those that redecorate their houses all the time, those that take business and personal risks often. Of course there are all the stupid and thoughtless risks people take, causing horrible, life changing results to themselves and others. But that's just selfish stupidity. I never took big risks with riding horses, skiing, biking, lake sports, etc. I was always safe and cautious, and have only been mildly injured in the past. Ironically, no broken bones from fun. But now, how ironic, daily bone issues from stupid myeloma.


I observe others. Always have, always will. I think about all the risks and stupid choices some make. And so often, with little or no consequences. People that don't take care of their bodies and minds. People that don't respect themselves and others. And they're well and doing fine. Drugs, drinking, not eating well, stupid choices, etc, and they're doing fine. Me, diagnosed with deadly cancer at 50. Jim diagnosed with life stealing Alzheimers. Makes zero sense. We just wanted to enjoy the simple things in life, and all has been stolen from us.

I was awakened early yesterday morning with scuffling noises in the family room, where Jim sleeps in a chair. The little doggies sleep there with him. But as I heard the scuffling sounds, I also heard the little doggies coming down the hallway to my bedroom. I hear their cute clicking feet and clinking ID tags. Often they come separately, but this time, the 2 of them came together and wiggled at my bedside. Oh boy... something's up, as I tried to clear the sleep fog away... yep something's up... and it's only 5:30am!!!

Grrrr, not happy... but up I went, and what do you think I found?? Yep, Jim had managed to scoot the wingback chair backwards towards the kitchen and managed to get himself out of the chair, and up the step, but then FELL ON THE FLOOR RIGHT BY THE GLASS turtle terrarium!! I have NO idea how he didn't break the glass, as his head was on the side of the glass, and his body flat out on the floor. Crazy how every time he's fallen, he never gets hurt! Sometimes bruised up, but never anything broken. Insane how strong his body still is. If only his mind hadn't failed him. Well, I wasn't happy, and I'm not the nicest person when woken up suddenly, especially with all the bone, muscle and nerve pain I have. And there he was flat out on the floor at 6am!!!

See Jim's head on the GLASS Turtle Terrarium!!! 
OMG, what could have happened...

And all my stories need to be continued later, as I have my stikn head, brain, neck MRI soon... eeeekkkk, wish me luck that I don't have a bad reaction to the Gadolinium contrast... wish me luck that it's all a mistake and I don't have a 36x37mm mass in my head...

And I have not so happy IGA news after 6 weeks on Elotuzumab Emplicity, Revlimid, Dex

And we have a new rescue doggie, and she has quite a story :)) 

Meet Coco :))

Best Buddies!!!

Promise I will update later today, unless I have DRAMA.... ahahahaa
==================
*****UPDATE!!!

OMG- I never asked how long the MRI would be today! Silly me, I always underestimate the "seriousness" of my situation, and go in thinking, "oh this will be nothing", and then The Nothing, Turns into SOMETHING! This stinkn MRI took about 3 hours today!! I went around 1pm and didn't finish the scan until a little after 4pm. I certainly did not expect that! I knew I would be doing the MRI "without" and "with" the Gadolinium contrast, but I never put 2 and 2 together, that it would be 2 full scans. Well logically I did, but in terms of time, never did. So long story short, I did the "without" contrast first, and all was fine for a while, but after while I developed a pressure point on my head, that drove me nuts with pain, while lying there perfectly still. Of course it did, as that's the problem I've been having for months now, duh, and the reason why I'm getting the scan. I waited until I couldn't stand it any longer, and when the Tech asked me if I was ok, I said "NO"! Problem with stopping the scan, is I would have to reschedule and come back... hellllooooo NO! So without making too much adjustment, he was able to put a little padding on the flat area, where the head  pressure point was killing me. If you've ever had a MRI you know how narrow the tube is, and how you have to lay there perfectly still... this became almost impossible for me to do with the pain. I'm not anxious or claustrophobic, this was real pain from the pressure of my head immobilized in the position it was.

The Tech reassured me that this part of the scan was almost over, and could I make it thru the next one, or would I like to reschedule. Oh nooooooooo, I don't want to reschedule and come back. Let's do this, and get it over with, since I had put it off since January due to all of Jim's issues, then the Virus complications, and also me just being me, and thinking this head thing wasn't a big deal. Ha! Payback Julie. Never underestimate the power of Myeloma trying to beat me up and kill me.

So up next was the Gadolinium injection. Yes I was scared I was going to have a reaction, and here I was an immobilized sardine in a narrow tube, with a helmet like head gear thingy on me. Oh gawd, help me. What have I done to deserve all this torture for 10 and half years now... ok Julie, just shut up, put up, and battle on. Needle into my left arm, Gadolinium in... anticipation mounts... will I have a reaction, will I be ok... Here we go, scan #2...

And I was fine! Whew, no reaction then and still as I update you at this late hour. Thank you body for not betraying me today. So there went another 45 minutes of detailed scanning, anticipating something, but all went ok. Clink, clank, bing, bong, clickity, click of the MRI machine. Did I really do that for the length of time I did. Wow! I'm just so beat up from 4 hours of chemo yesterday, 3 hours of MRI scanning today, and the beginning of chemo crash symptoms. Ah Myeloma, your gift just keeps on giving.

My MRI tube
See the frame where my head had to be placed and remain perfectly still
and the head helmet brace thingy put over my face.
I guess I'm stronger and braver than I give myself credit for... 

So it's done, and all my Gadolinium worry is now in the past... well I hope so. Let's see what happens by morning. I did take 2mg Dex steroid this morning, along with non drowsy antihistamine, and some Tylenol. I've learned the advantages of "premeding" from all my years of chemo infusions. Smart, huh! I received a CD disc, and tomorrow I will try to make sense of it. Haven't had much success in the past, as the scans all look like outer space alien views to me. Who knows what's lurking in my head... have a Dr appt July 14, but maybe she'll call me before then to give me a "head's up" (ha ha pun there). 

And finally, look at these lovely IGA results showing that Elotuzumab and Revlimid are doing nothing to stop the forward march of Myeloma. Dang it... what to do next?? Maybe go backwards and try Velcade with Revlimid, as I never did that front line, first choice option back in the day... 
Ok, can all this just be over, and I go back to my pre-myeloma life...  maybe not, as numbers don't lie:

Yikes, up up and away we go

So that's my story. Jim of course is just fine from his fall, and doesn't remember a thing. He never breaks anything, or hurts himself when he falls. Totally amazing, as most oldies wind up in the hospital from falls. Not my guy. And how he grazed the glass turtle terrarium and didn't break it, and slice his head open, I'll never know... wow! He's gonna outlive me!


Thank you for reading and caring about my life and stories as you do :)) 





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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.