Cowgirl Up!!! ... Does Horse Poop Cause Cancer??

Wednesday, September 30, 2020

He's Gone...

 

Said Good Bye to my amazing Cowboy 9.29.2020


Tim McGraw - Live Like You Were Dying (Official Music Video)


OFFICIAL Somewhere over the Rainbow - Israel "IZ" Kamakawiwo╩╗ole 

One of Jim's favorite songs from his Hawaiian heritage


I cannot write much, as I am so overwhelmed with loss and exhaustion. The most wonderful man in world passed yesterday from horrible Alzheimers... he is at peace, finally... but his loss is immeasurable. He's been here at home with all of us, during his awful decline, and he took his last earthly breaths with us... So tragic, so unfair for such a hard working, giving, loving, selfless, caring, do everything for everyone else, man. All he wanted in his later years was to putter around our ranch, care for his roses, all the animals, his mechanical toys, and all of us... If Alz had not stolen his brain, he could have lived beyond me, as his body was still strong for a man his age... 




Me,... my IGA is up 400 points from last month... I'm now over 8x the high end of normal :(( 
My CBCs are so low, Dr cancelled my Velcade injection on Monday and wants me to do a few injections of Zarxio (Neupogen) this week. I'm Neutropenic again too with an ANC of .79... Scary!.. Have a Dr appointment Monday. Will probably have to accept my current chemo of Revlimid, Velcade, Dex is not working. Will probably have to accept a new treatment plan. Have Radiation appointments in October for all my lesions, masses, fractures, bone deterioration, etc. I hope all goes well, and I don't have a pain repeat like what happened in June, July, Aug. Recently my R side chest, R side, collarbone, and back is giving me new extreme pain. Especially upper R side chest area, where the "lung mass" is. Maybe a fracture is poking into my lung lol. Hurts to breathe. Myeloma just never stops eating me up alive...



Live your life. Don't put anything off for long. Time is too assumed. We think we have so much time, so much future... then we don't...

Thank you for checking in and reading... more next post...


Sunday, September 20, 2020

Getting Better Slowly

 9.20.20


Hello Friends, 

Just a brief post as I'm completely beat up due to my husband's complicated and declining health situation.... 

Fortunately, I'm slowly feeling stronger and with less pain. Fevers gone for about 2 weeks now! My L side Clavicle lesion(s), fracture(s), tumor, etc is not as painful since Radiation in July, altho the crazy spontaneous tumor that suddenly grew out of no where, on the end of my L collarbone, is still there, and kinda clunking into my throat. So weird.

My R side Clavicle lesion and fracture is less painful also, along with the pain in my head and neck from all the bone disintegration and the R side skull mass, which caused unbearable headaches back at the end of 2019 and beginning of 2020 . If you remember my pain crisis posts in June, July, Aug, where the PAIN was off the charts, I have fortunately slowly moved past that, and can move my arms above my head, and do many body movements and finally dressing myself, showering, driving, etc, as couldn't do for weeks and weeks. Again, I really believe I had a severe reaction to Elotuzumab/Emplicity, and that particular immunotherapy/chemo/treatment caused extreme nerve and muscular pain, and grew tumors like weeds, awakened lesions and fractures, and generally wreaked havoc on my body for several months. Again, only other time I experienced something similar, was in 2018 with a severe, very similar reaction to Zometa.  

I continue to do 40mg Dex steroids, with Velcade and 21 days of Revlimid. Just like back in the day when I was on Revlimid, this treatment  is causing me to "live" in the bathroom about 2 hours after I eat. It's so dang predictable, it's funny. I don't mind a good daily GI cleanse, but basically everything I eat goes thru me. I don't get much done, as I spend so much time in the bathroom lol. Just took Imodium, as I've cleansed enough for one day, and I'm "pooped out" and so tired LOL... If it wasn't for steroids, I'd probably look anorexic. Mondays are my treatment days, and my main eating day, but that sure "backfired" last Monday, when I ate a lot of Tri Tip, trying to boost my Reds, Platelets, Hemoglobin, etc. Ugh, was cleansing for hours and hours the next day, and actually felt sick, but that was also due to the "normal weekly crash". 

Lab results today were low, low, low, and I'm really surprised, as I feel stronger and better. Thought they'd be closer to the the low end of normal, rather than the low low low they are... I also posted my Myeloma status results on 9/13, so don't miss that crazy results post. Tragically my husband Jim continues to slip away, and is basically non verbal, has forgotten how to walk, stand, etc and just this week, has lost interest in food and drink. Occasionally, one of us can get some hydration in him. He's basically in the hospital bed 24 7 now. After chemo tomorrow, I will meet with his home health care team and discuss moving from Palliative care to Hospice. I just cannot believe this is our life. I can write about all this awfulness as I do, as it is so completely unreal and out of body to me. I just keep thinking I'll wake up to a new day, and we will be who we used to be...  what-to-expect-in-the-late-stages-of-alzheimers-disease 

Right side lesion and lung mass 


Here's my R side Clavicle fracture, lesion and lung mass. I'm so ignorant of Anatomy and Physiology, I didn't realize my lungs were so high up in my chest. After my Dr sent this pic to me, I didn't realize the round white lump was the lung mass they want to radiate, along with the fracture and lesion on my collarbone. Not sure if you can see the measurements (click on the pic and enlarge, and then you'll see the mm notation). The Clavicle lesion is 33mm and the lung mass is 70mm. Whattttt!!! No wonder my Drs are worried and didn't want me to wait to do Radiation. I am just now putting this all together in my blonde, chemo, fever fried brain... just didn't realize the size of the lung mass until I saw the measurements when posting the pic for this blog post. 

Thanks for reading and caring as you do. I really wish I was making all this up, and it was just "fake news", but Jim and I are a real life horror story right now... 



Sunday, September 13, 2020

Crazy Labs Update!

 9.13.20

Hello Friends-

Decided to start a new post with screenshots of my recent labs (rather then add to my 9.10.20 post), and what better day than the 13th to do so.

I am so thankful I am feeling better each day, and my side effects are lessening daily! I am treating myself like GLASS, like I have been for some time, but even more so. I just don't want a repeat of June, July, August if at all possible. 

Had a phone appointment with my Radiology Oncologist on Thursday, and went over my xrays and scans again. I sure wish I could read the CD DVD disc they gave me, but it's all UFOs to me lol. The concern my Dr has is the lesion on the Right side collarbone, and a fracture there too. That's were my pain is now, but again, so much less than in the weeks prior. She is also concerned about a fractured rib that also has a MASS that also is growing into my Lung. Huh... omg, all this is so complicated and foreign to me, as I used to be so healthy, I just can't wrap my head around all this myeloma damage. 


So guess what I said?
Yep, let's postpone treatments to October, as I just want to get rid of these crazy side effects, and feel better. She really doesn't think my fevers, and other crazy side effects are Radiation related. In 2018 Radiation gave me such relief, so that's why I attribute all my insanity to Elotuzumab. I don't want to scare my fellow myeloma warriors about Elotuz-Emplicity, as it's probably a great treatment for IGG and Light Chain type myeloma. But my IGA type myeloma sure got pissed off, and all Hellllllo broke lose for me...  One of the reasons I feel this way, is that my Lambda Light Chains are high, and I've never had that before. I've never had high Light Chain myeloma labs, so some sort of Mutation must have happened. You can read about Elotuz here and other Myeloma sites:  Elotuz-Emplicitythemmrf.org Emplicity 

Ok, here are screenshots of my recent labs, and today I will take more labs for my Chemo lab visit tomorrow for retro Velcade. So far, just the "regular" side effects from Velcade, Revlimid 10mg and Dex 40mg. You know, the Neuropathy, then Dex crash, then hours in the bathroom for several days, or hours after I eat, Neutropenia, etc. If it wasn't for the Dex, I would look anorexic, as most everything goes thru me lol. But I don't mind that, good to be cleansed all the time lol. Thankfully I don't have the crazy debilitating pain in my head, neck Clivus, and Left side Clavicle, hands, arms, etc much any more...


Crazy not much change in my IGA
Thought it would be thousands more
But still 8x the HIGH end of normal. 
Crazy I'm still as "functional" as I am :)) 


Maybe Velcade, Revlimid, Dex 
is doing something!
Or Mutation is at work

So weird!
Never had high Light Chains!
Mutation activity??


But this one!
This is the one that made me think my 
IGA would be crazy high. 
See why I think everything mutated
Thank you Elotuz!
I was 4.3 at Diagnosis Dec 2009
and now this! 

So who really knows what's going on inside of me. I would love to have a chat with Myeloma and hear what really is going on. Labs tell everything, but hey, I want it in words :))

Last CBC and organ status labs were my usual low, but I put myself on Iron, Will be interesting what labs say today... 

But my goal at this point, is No Pain, Slo-mo Mobility, Quality of Life, and myeloma labs that are steady. I don't even care if they're high at this point, as long as I feel ok, can function as I did before Elotuz. A steady, consistent roller coaster is ok by me. My IGA has been as high as 5750 at Diagnosis Dec 2009, so not there yet...

Hopefully my next post will be "just kidding", I'm fine, they have my labs mixed up with my invisible twin. I just want to get on with my "missed life"... 

So I lament and have pitty parties:
Senior horses I will most likely never ride again, 
Beaches, Forests, Natural Wonders I will probably never be able to visit again,
Food I used to love, now doesn't give me any pleasure anymore, just diarrhea and heartburn, 
Our own backyard, gardens, flowers and animal critters wait for my attention that I won't be able to give, as pain and fear of fractures and broken bones limits everything I do...
And I so miss get togethers with family and friends. so many places I wanted to go...

Please friends, just don't put things off, hoping, planning you can do it all tomorrow or during your "Golden Years"... I was too smug and presumptuous about my once "good health" and my future, our future... poor tragic Jim...

Thank you for reading, caring, and commenting as you do. Means the world to me that my blog is meaningful :))



Thursday, September 10, 2020

Finally Some Relief!

 9.10.20

Hello Friends,



Finally! 
I am feeling better and getting relief from the fevers and excruciating pain!
I don't want to jinx myself, but I haven't had a fever now for a week, temp staying between 97-98s! It feels so good to be on the road to "normalcy" . And the horrific pain in my collarbones and shoulders is slowly lessening, and I have so much more range of motion! So excited about that. I can shower and dress without help, and most importantly, I can once again drive myself to Labs and medical appointments!!! Just beginning to attempt little chores around the house, and trust me, I am so very careful and continue to treat myself like glass.

I truly believe I had some extreme reaction to Elotuzumab, like I had with Zometa in 2018. It's so crazy  how we cancer patients put all these medical chemicals in our bodies, NOT KNOWING WHAT THE REACTION WILL BE!! Sometimes "ignorance is bliss" or honestly, I have just given trust and control to my medical team, that I will be ok with what I am treated with. Of course I've spent endless, uncountable hours researching Myeloma and treatments since my Dec 2009 diagnosis, so I know what all the myeloma treatments are about, but there's never any advance knowledge how our bodies will respond and react to each treatment. I read all about the side effects of all the treatments proposed, and do what I can to anticipate various side effects. For the past 10.9 YEARS of treatments, I have micromanaged myself quite well, but the reaction to Zometa and Elotuzumab completely caught me off guard and I hope to NEVER EVER experience again what I went through in June, July August! Crazy how I do so well with some, and then this... but I'll never know what REALLY happened. I'm just so very grateful I am on the road to feeling better and feeling like "me" again, and feeling hope again. 

Have a phone appt with my Radiology Oncologist soon, so I'll be back to continue my update and post my crazy Labs! I think Elotuzumab even "mutated" my IGA type Myeloma, as I have a higher result on my Lambda Light Chains, that I've never had before!

I'll be back, thanks for checking in, and being such a loyal follower :)) 



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.