Grateful and Amazed!

9.29.19

How are we at 9.29.19 !
How is it the end of September already!

How can it be that I am only 3 months away from my 10 year life changing Myeloma diagnosis!
I wasn't supposed to be here still!!
How am I still here and as "Ok" as I am?!
How is it my body is strong enough to battle Myeloma for over 10 years now?
How is it my body can withstand all the powerful chemo chemicals I have pummeled it with?
How is it I am able to handle all this physiologically and psychologically?
How is it I am still here?

Daily, I am amazed, surprised, shocked, I am still HERE...
I am so grateful I am!
I think about so many things that have contributed to my survival. But who knows what has really saved my life...

Chemo for sure!
Genetics on some level?
Previous "good health"?
Healthy lifestyle?
Low stress? Noooo!!! LOL... I have way too much stress!

One thing I know for sure, is that I am very very very careful with not getting sick, and I de-cootie everything around and near me, humans especially! Animals I don't worry as much about!

How have I survived this long WITH MY BODY TRYING TO KILL ME DAILY!
Cancer, especially Myeloma, is a very powerful mutating enemy. How can I still be as alive as I am, with these killer cells permeating my entire self? Seriously, my entire physiological being!
Would be so fascinating to "really know" what is going on inside me on a bio-chem, cellular level. You know those high tech medical cameras used for surgeries? Or other medical evaluation tools that can look inside us, or those computer reenactments, like on the TV show "Monsters Inside Me"... Wouldn't it be incredible to be able to see our cells actually mutating and morphing, and actually see how Myeloma grows or invades our healthy cells? Well maybe not everyone would like to see this, but I sure would :))

I know how I'm still alive...
Must be my amazing eating habits I developed AFTER my Myeloma diagnosis... aahhahahaa... I'm on the "See-Food" Diet ;))  I See It, and if it appeals to me I eat it :)) Anything goes on Dex Steroid Day LOL. Crash days... ugh... minimal everything, just trying to hydrate and eat something that won't make me more nauseated. When people ask me my "secret to my success" , or how I'm not "steroid-bloated-fat", I reply... "eat anything you want, anything in moderation". Balance, nothing extreme. Some days Broccoli, some days Ice Cream. But in all seriousness, I do eat healthy, but I don't do supplements, or trendy diets or current fad ingredients. I don't do daily meat/fish, yet I do focus on Protein, as I was mostly Vegetarian BEFORE my Myeloma diagnosis. Now I do a lot of "Premier Protein Shakes" with my pills daily. Often eggs, cottage cheese, cheese, yogurt, etc. Lots of watered down pure Cranberry juice, And I do like breads, but I control myself on those, as on steroid days I could eat a whole loaf of warm Cinnamon or Lemon Bread without blinking, but I don't allow myself... I don't do a lot of fresh fruits or veggies, as I am very very cautious about bacterial contamination in Fresh things. I mainly do frozen cooked things. With an extra radiation zap! So who knows what is keeping me alive, but I'll take it...

Chemo Steroid Day a few weeks ago

Did This After my weekly blood tests

Gotta sustain strong blood, right :)) 

And while updating this post, my Labs from earlier today came in, and they just blow me away how "good" they are. Well not GOOD for the HEALTHY person, but "Good" for me! All my organ stats good. WBC always low in the 2's unfortunately, RBC low, but most all the others Near normal! Creatinine (good) low. And shockingly my Beta2Microglobulin came in... still in the NORMAL range! Wow! I'm so shocked. Guess me and 40mg Dex steroids, Velcade and Cyclophosphamide are a great Myeloma Killing Team! Insane how I do ok on powerful chemicals. I've been on this triplet for a Whole Year Now!!! Wow!! And on chemo, immunotherapies for almost 10 years now. Whew!

I have a phone appointment with my Dr on Thursday, and I should have my Important Myeloma Labs back by then. Perhaps I will add them to this post, or wait until my next On The 9's post. Check back, I may surprise you :))

Tell me your story...
I know there are so many amazing survivors out there, with incredible stories too! I'd love to hear how you are, and what treatment (or not) you're on :))

Thanks for checking in and caring as you do!

9.19.19 ... 9.9 Years and Counting Towards 10

9.19.19

The moon and the moonlight has been so beautiful these past nights. Actually all summer long, the full moon has been stunning. Glowing, intense, alive. There's something about summer nights that really affects me. Energizing and Renewing me. The peacefulness of night, the calm of the end of another day. The hint of the night's cool stillness coming, stars sparkling, twinkling mysteriously in the sky. The crickets clicking, the owls hooting, the night birds chirping, as they settle in the oak trees for the night. Moonbeams shining down on the horses, as they relax from the hot day of waring with biting flies. The moon, a magical flashlight from the heavens, bathing everything in a soft glitter. I love the warmth of summer nights, and soon, the crispness of summer ebbing into fall. I contemplate another day battled, another day survived. Giving me hope, but also giving me sadness.

Every night, after the challenges of the day, I "escort" the 3 little doggies outside for their nightly pee.  They're so funny how they won't "do their business" without me actually walking out with them.  But this is how I get to see and feel the magic of night. This is how I get to see and feel the moon, that most miss, by going to bed early. My nightly routine has become me putting Jim to bed, sometimes easy, sometimes an ordeal... more an ordeal when I am not well from weekly chemo side effects. You know that feeling when you Just Want To Be In Bed.... Like Now! And you don't want to deal with Any Thing Else? That's my Tuesday and Wednesday nights. The yucky side effects creeping in, dragging me down, sucking me into awfulness. Nausea, achyness, swollen, bloat, that metallic taste in my mouth, headachy. That over-all chemo crash yuckiness, the punched in the gut, I might get "sick" feeling,... but when I'm outside, no matter how awful I feel, the moon and the beauty of the night, somehow replenishes my spirit and gives me hope to move forward to yet another day.

But as serene and energizing and peaceful this can be, it also triggers sadness in me. A sadness some may find selfish, but it's a profound loss type sadness. Being outside at night, especially on warm, moonlit summer nights, reminds me of days gone by... summer nights full of life, fun, laughter. Summer moonlit horseback rides, summers full of health, happiness, and a sense of carefree that only youth and health allow. I love these moonlit nights, but they make me sad now. I feel so much loss. I am so aware of what I put off, of what I didn't do, of what I didn't accomplish... that now, I'll never be able to do. Don't get mad at me for saying "never". I have to accept my fate. Our fate. Our body betrayals. Being outside at night slams my realities in my face. The beauty of the night, of the moon, only intensifies my losses. Yes, I have so much to be grateful for, but summer nights make me so sad, so aware of what can never be again...

I always look up to the heavens, to the night sky, to the moon and stars and cry out, laugh out... WHY? WHY me? WHY us? How come? How did two people wind up so sabotaged? 2 incurable, terminal illnesses at the same time. I know, I know. The world is full of unfair stories. Everyone has challenges. Everyone has mountains to climb. Rare is it the person or family that plans, and those plans, dreams come true. Most stories are of unrealized dreams, of deep sadness and loss. I know, I know, I am so very "lucky" in so many ways... but I hurt deep inside my core. I am sad. I am frustrated. I am devastated for our losses. For what could have been, that cannot be now. Warm summer nights remind me of what was, what could have been. What should have been... 

The doggies circle around me, sensing something. They tentatively lick my leg, or hand. Their tails wag in happiness. They have no idea my sadness. Neither do the horses. They have no idea how I miss those warm summer nights with them, hearing their barefoot hoofs softly, silently impact the cooling dusty earth beneath them. How I miss the breeze whispering through their manes, where I hold the reins. I miss the sweet scent of horse sweat under my saddle. The owls hoot, the night birds quietly chirp, the crickets click, and the horses swish their tails, while scratching and grooming each other, before finding that perfect spot to lay down for the night. They have no idea my sadness. They have no idea how I miss them, even though they are right there. The stars sparkle and wink, the moon shines brighter, lighter...  I pull myself together... I force acceptance on myself. I shake my head, but I can't shake the "Why"... But I am grateful, no matter how sad I am. I am grateful for the life we still have, and the miracle that I am still here, 9.9 years after my myeloma diagnosis. I am still here. I am still here...

Crazy Times, Crazy Lab Results, Crazy Stress, Crazy Myeloma, but GOOD News

Hellooooooo 9.9.19

It's crazy Treatment Day, with a side of  Roids!
Yes, it's Monday Medical Madness Day with 40mg Dexamethasone Steroids, so I'm flying high and wanting to have fun, in all this crazy illness insanity between me and my hubby!

I 'll detail my current Myeloma status labs below, after my Velcade appointment. I do screenshots from the Kaiser website, then download, then upload, and hope to find time with all my hubby's "demands" LOL!!! It's like I have a 180 pound Toddler, who wants to follow me everywhere and try to talk about things, but it's mostly "nonsense" coming out of his mouth :(( But I can read his mind after 39 years, so I figure out what he's trying to convey. So so tragic. Losing mental functionality is so awful... but all this stupid cancer stuff is too. I just can't wrap my head around both our terminal, incurable illnesses. But I'm doing better now, not having the intense meltdowns I did a few months ago. Acceptance and moving forward daily, is key to survival...

I used to love to write my blogs late a night, when the house was quiet, and he was asleep in his chair, or in bed, the doggies and all the critters sleeping, while I had the windows open, listening to the summer breeze, crickets and the hoot owls hooting... so peaceful, so serene...

NOW... omg, I NEVER get any time to myself... but that's another story perhaps for a different post.

So coming later later later....
Screenshots below :))

IGA
M Protein
Beta2 Microglobulin
CBC stats
Organ function stats

And you know what... the results are "shockingly" ok considering all the STRESSSSSSS, super random eating I do, and all the non stop, I never get to rest, never have time to be a "cancer patient" lifestyle I have here. Except on days 2, 3, 4 after Velcade, Dex, Cytoxan, I do feel kinda "gross", so I do sometimes, just have to sit and feel awful.... BUT NOT TODAY, THANK YOU 40mg DexaMETHasone :))

HERE THEY ARE!!!

M Protein still Abnormal

But down points every month

Was over 1.5 earlier this year

And was 4.5 at Diagnosis, Dec 2009

Right in the middle!

So grateful my Kidney function is still good! 

Can't believe my IGA is still coming down

even after being on this triplet of

40mg Dex, Velcade, 800mg Cytoxan for almost a year now!

But I'll take the results, 

even though they are outside of the normal range

Not bad, and hoping it stays in the Normal range,

although at the high end

Thank you for checking in, and caring about my roller coaster life.

Hoping you are doing well if you are a myeloma buddy, and your treatments are effective, healing, and manageable.
If you're friends, family or happily not touched by all this medical insanity, I hope you are having a wonderful end of your summer, and all is good with you and yours!

https://myelomabeacon.org/news/2019/08/29/tnb-383b-for-multiple-myeloma/
There cur­rently are more than 300 clin­i­cal trials ongoing around the world that are investigating treat­ments for multiple myeloma and looking for patient par­tic­i­pants. Most of these trials are exploring new myeloma ther­a­pies that have not yet been approved for use outside of clin­i­cal trials, and many of these “investigational” ther­a­pies, as they often are called, have the poten­tial to be extremely effective.