Hello Friends-
Whoohoo we've almost made it through April! This life becomes more comical and tragic all the time for me. Some days I can laugh, some days I cry, some days I rage. I've never experienced the spectrum of EMOTIONS as I do now, daily. With each challenging "episode" I am breathing deeper, keeping more in perspective, and calming myself more effectively. So much of life, is not always the "What", but deeper in the "How" we process it.
Between my On The 9's posts, I always have several topics I think about and want to write about. But there's always some drama, a hilarious or serious event, that seems to happen just prior to my post, so off I go in another direction. For several posts now, I have wanted to chronicle and detail allllll my various treatments and side effects for the past 9+ years. See for me, reading about other's successful myeloma treatments is so helpful and enlightening. When I was first diagnosed, and when I become "refractory" to my chemo cocktails, stumbling on other's blogs, with detailed personal and medical stories, helped me so much. So for those who've found my blog by chance, or for my virtual warrior friends, I hope reading about what has worked for me, for how long, and at what side effect "cost", is helpful and informative for you.
But that detail will have to wait for another post, as our absurd bathroom activities are just too comical to not post :)) I have a few funny stories, but if you're squeamish about body biology... skip reading...
Ironically, bathroom activities are interrupting me AGAIN... so I'll be back :))
And I also want to tell you about my recent labs...
I'll be back, after the poop episodes and my Velcade double injection appointment.
The constant sabotage is REAL :))))))
First of all, I'm crashing sooner from my Monday treatment. Right now, I feel nauseated, blah, tired, red in the face from the steroids, and over all yucky. But in THE BIG PICTURE OF THINGS, I'm ok. It's truly amazing what we can all get used to, as life evolves us. I constantly self talk, self counsel. Thank goodness we don't have brain banners on our foreheads with our thoughts! I am moving forward each day, containing and compartmentalizing my complicated feelings, emotions and thoughts. I am moving through the stages of What The Heck, How Can This Be, This Is Not Real, Universe You Have The Wrong people. I've gotten a handle on my Denial, Anger, Disbelief, Frustration, and moved to Acceptance, Understanding, and Patience. What Eevvvveeeerrrrrr Life, It Is What It Is. I am not in control of the What, just in the How I Process It, and What I Do With the Processing.
But there are times... when it's just so ridiculous...
At this time in Jim's Alz illness, he is still mobile, but not very steady, and we have dang slippery tile with a few step-ups in our house. So the risk of slip and falls is always there. I tell him all the time, if we have mobility we can do this. If we don't, simply put, we can't. Oh the things we take for granted when we are well. Yes, MOBILITY IS EVERYTHING. Mobility to get to the bathroom is everything to me!
So with my sudden and surprise lower GI side effects, I am periodically in the bathroom for "extended" visits. Well with Jim's bathroom "personal care" needs now, there have been times, well many times, when he needs me and I Can't Be There for him, right then! The other day, I was in one bathroom with my "cleanse", and he called for me to help him in another bathroom. Oh No! I can't get there in time... what disaster will I find when I can get there...Yes, thank goodness we have multiple bathrooms in our house, but the bathroom juggling events are hilarious. I called out "instructions" to him, which in his cognitive status, is a joke, but my hope is something I say registers. I let him know I couldn't get there to help him, and to be sure to do... not do... blah, blah... I'll spare you the details.
Sometimes it works out, sometimes it doesn't. Sometimes I can move fast enough to get there to avert a disaster with him, sometimes not. I'm keeping Walmart and Costco in business with all the cleaning supplies and wipes I buy every other hour. There have been times I am helping Jim, and my own body says... IT'S TIME... NOW!... so I leave him, threatening him with all kinds of mean things if he tries to do anything but Sit There... race to take care of my biological needs, hoping to get back to him in time to prevent a "disaster". Sometimes it works out, sometimes it doesn't. I've put a chair in each bathroom, as his biology takes time now, or we are thinking, the body function-brain disconnect is complicating "things" for him.... Our adult kids are so great, and have helped with this lovely task when they're over, when I was having Meltdown Overload, or I'm not feeling well, as Jim's needs have sadly exponentially accelerated.
Sunday I brought home Stonefire take out. If you live in CA, you know they have great quality BBQ, salads, etc. I had been to a memorial service earlier in the day, but didn't eat the brunch, as I was too many freeways away from home, and you know by now, I don't take ANY chances with eating and not being close to home. So by the time I got home with the delish food, I was really really hungry. Stupidly, I ate a sample of everything I ordered: Tri Tip, Ribs, BBQ Chicken, Spinach salad, BBQ Chopped salad, bread stix, etc. I ate more meat at one sitting than I do in weeks, as I'm not a real carnivore. Sundays are usually "safe eating" days for me, since Mondays are treatment days, and I'm mostly recovered by then. Welllllllllllllllll, guess what happened.... OMG around 5:30am, I awoke with cramps and was called to the bathroom in a way my usual chemo cleanses don't ever affect me! Talk about body rejection and feeling SICK. Cold sweats and all, and I thought I would cleanse from from both ends at the same time. OMG I felt awful. Haven't experienced that for years and years. So I was of course there for an extended time, felt completely, totally exhausted and "drained"... went back to bed, hoping to sleep for a while, and then... I hear Jim stirring... and so began my Monday... no wonder I'm so "pooped out" and beat up today... And sooooo... the Adventures in PoopVille continue....
Maybe I'll install double golden toilets for us :))))))
Ok, enough Poop News... here's my amazing body organ labs:
Creatinine = .56
GFR = 102
Alk Phs = 63
AST = 18
ALT = 18
Biliruben = .6
CBCs not as good, but ok:
WBC = 2.0 low
RBC = 3.81 low
HGB = 12.5 ok
HCT = 38.3 ok
ANC = 1.51 low
"If your blood is low in neutrophils, you have a type of leukopenia known as neutropenia. Neutrophils are the white blood cells that protect you from fungal and bacterial infections. ... "
"If your blood is low in neutrophils, you have a type of leukopenia known as neutropenia. Neutrophils are the white blood cells that protect you from fungal and bacterial infections. ... "
Yep, always immune compromised. Always fearing Cootie Attacks!
Next Myeloma status labs will be end of 2nd week of May for May 13th Dr appointment. Will be interesting to see how I'm doing with the increase of Velcade from 1.59 to 2.09
I met with my new Dr on Sunday! Recognize him??!!
Just kidding-
Met Dr Ken at a social event recently-
such a fun, smart, funny, wonderful man!
Ok enough stinky news, let's end with our beautiful, deliciously scented roses
If only I could share the scent thru text here!
So Ahhhmaaaazzing!!!
Thanks for reading and laughing along with my ridiculous life. Hoping you and yours are doing well, and if you're a myeloma warrior, I hope your treatments are going well, and not causing you much drama! Thank you for all your wonderful, supportive, caring comments!
