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" Kamakawiwoʻole 

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...

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... 

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-Emplicity, themmrf.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 :))

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 :))