The Body Sabotage Continues Non Stop, Go Away Myeloma

 1.11.21

Hello Friends and Loyal Followers. 

Here we go with posting on the 1's as I enter my 11th yes, Eleventh Year of Myeloma survival.

I have to make this short, as I have reacurring bloody nose episodes and don't want to bleed out on my computer. I had written some deep thoughts yesterday to post, but never finished it and don't have energy to finish it now. Maybe I will later... 

I'll add screenshots of my results as they come in, so be sure to check back :)) as well as updating you on my new 2021 treatment plans. 

So quickly, here are the Lab results that have come in for my appt with the Myeloma Specialist on Tuesday (tomorrow). I was surprised how high (as in "bad" high) they were. Haven't had results as high as this, on these particular tests:

Beta2

WOW... 10.8 for Beta2?

Wonder if that's a world record yet?

Total Protein

And 12 for Total Protein, 

Never had anything like that before 

and actually never paid much attention to this value

as it was always in the "normal" range. 

                                                          IGA

OMG up up and away we go :((

Never been this High before...

M Protein below

Yikes!

It's never been this High :((

I'm so sad Myeloma is so intent on doing me in. I have so much life I want to live... we'll see how the new combo of Ninlaro, Darzalez, Dex does. Last week was my first with these 3.  Have had Darza previously with great success, and Ninlaro is in the Velcade family, and I did great with Velcade for quite some time too... and Dex steroids. Well I'm ditching the High Dose 40mg for 4 days on, as it's bloated me up along with my Extramedullary Abdominal tumor mass Alien. I look preggo, my belly is so bloated with my Alien. Helllllo Nooooo to that continuing! I barely eat now, as I can't stand the bloated, full feeling. The idea of food still appeals to me, and I do eat tiny bits at a time, but all the fun things I prepared before, ugh, just can't eat now without feeling like a preggo BroodMare. 

I have frequent bloody nose episodes. Like blood pouring out like a faucet. Today I thought I had plugged it up, took the tissue out of my R side nose, and SPLAT, lovely red myeloma blood all over the floor. This is due to the lack of Platelets now. I didn't post those results, but my CBC's are not happy, to say the least... Never had such bad labs :((

Time to build up those lovely Platelets and supportive blood.

Myeloma, you're just too smart and know just how to sabotage me.

So when my IGA and M Protein status comes in, I will screenshot that for you.

I expect some crazy outrageous number, that I will probably then submit to Guiness Book of World Records. Yep, and there they are above, super High :((

And please don't be offended,...... but I spoke at length with the Medical Social Worker the other day, and want to get the process going for ELO (End of Life Options). I am in no rush, seriously, NO Rush, just want to have OPTIONS, in case I don't have any more options, in case my situation becomes so dire, so unbarable I cannot breathe, move, function, or I can't care of my personal needs, I develop more and new painful fractures all over, or I'm paralyzed from fracture/bone breaks, the tumors have invaded everywhere, I can't eat and enjoy, the pain is overwhelming, and there is absolutely No Hope, Zero Hope, for anything helping me or healing me, and all I can do is lay in a Hospital Bed and "wait" for the end to come... Remember, I went thru all of the drawn out, lingering End of Life experiences with my dear husband Jim, when Alzheimer's completely stole his life. As an Alz, Dementia patient you don't have any options (legally and psychologically). The end is just suffer, suffer, suffer... and for the family to wait, wait, wait, watch, watch, watch, along with Hospice assistance... I would of course make this decision with my Adult children, not all by myself...

If you have NetFlix, there was an episode in "Grace and Frankie", about the ladies's friend who chose this option. She threw a great party, then privately passed. How ironic that I am watching this series, and this episode is there. She had "no more options", so this was her choice of how she wanted to exit the earth. And I emphasize, I would only choose this route, IF THERE WERE NO MORE OPTIONS, AND I'M ONLY SUFFERING BEYOND SUFFERING... I would NOT do this option if my kids did not agree.

And yes, I have decided to do Clinical Trials after I have gone thru all the FDA approved Myeloma treatments. I will do the Phase that has the most options and the researchers know the side effects. Because honestly, as I have mentioned a zillion times, I will not spend my last weeks, days with my head in the toilet... 

I will continue this post as more results or chemo changes come in. So please continue to check back. 

UPDATE- 1.13.21

Chemo regimen change - 

Bye bye Ninlaro pills 

Hello Velcade shots again

Hello again to IV Darzalex

Hello again to Pomalyst pills

And of course Dex Steroid pills

Will do 5 days of Zarxio-Neupogen to raise low WBC

Will do a bag of Platelets, and 

2 bags of Blood

Huge shout out to all the Blood Donors out their saving all our lifes!! Thank you for being so UNselfish 

Thank you for reading and caring as you do. 

You help make my life feel valuable :))