Incurable, Incurable, Incurable Forever and Ever and Ever

6.10,11.2020

Hello Friends,

Where to begin… I’m so beat up…
I don’t want to always post poor me syndrome news all the time, but sadly that’s the true reality of my life…

I hurt all over
Every time I move, I pull a muscle or tweek a bone
Or crack a bone, who knows
I hurt all over
I hurt physically
I hurt mentally
I hurt inside and out
I hurt because Myeloma is eating me up from the inside out
I hurt because I still try to be me, and do “regular” things, when I shouldn’t
I hurt because I am reminded of my lost dreams and goals

Still, now matter how much time has passed, how long I have been fighting Myeloma, I still cannot comprehend and accept what has happened to me… I understand intellectually, I know the medical facts, but I just cannot accept that Myeloma is killing me slowly, one day at time, and I don’t have the options I used to have. I used to have all kinds of options. I specialized in options. I created options. I worked hard for options. I coached everyone on their options. But my options have been stolen from me.

My life status hits me all the time, but now with the change to Elotuzumab-Emplicity, and back to Revlimid, with the resulting side effects, denied realities hit me daily. I am so sore. My head constantly hurts. My neck hurts, my back hurts, my legs hurts. It hurts to sit. It hurts to sleep. I can never fully relax or feel good. I’m dizzy all the time. I live half my life in the bathroom. I think I have new tumor on my spine, or maybe an old one that is now presenting externally. I felt this one when my little doggie Jack sat behind me in a chair, and leaned against me, and wow, I nearly jumped out of my skin.

I want so badly to be me. The me that did anything, went anywhere, worked there, worked here, did chores, did everything around our ranch. Just did, and didn’t think twice about hurting myself, because I was strong, I rarely got hurt. Seems like any time I do anything now, I tweek something, and I’m “punished” for my try, for days. I reach up, I lean over, I do any “normal” activity, I sneeze, I cough, I live…. and boom, something is tweeked. I hate pain. I hate suffering. I can handle this dang cancer sentence if I can feel ok. But pain. Pain is so painful. I dislike taking pain meds. But I have to take pain meds. My head hurts as I type right now. A deep pain in my R side head where this crazy “mass” is. My neck hurts, my back hurts, my toes are numb. But yes, I know it could be worse….

My Dr called me yesterday, or the other day and wants to expand the MRI I am due to take, have been supposed to take prior to the Virus. The scan will be my Brain, my Head, my Skull, my Neck, my “Cervical Spine”, etc etc. Yes, without and with contrast. I’m on the phone scheduling my appointment, asking questions about the Gadolinium contrast dye, and Suddenly… cleanse time. I never talk on the phone in the bathroom, but I didn’t have a choice this time. Lovely!

I don’t have cramps, and often no warning. Just a sudden “gotta go now”! This is another reason my life is so edited. How can I do anything, if my lower GI is always out to sabotage me. And this is Thursday after Monday’s chemo. 1,2,3,4 days later. Yes, I barely have 2 or 3 ok days each week. And no, I don’t want to take Imodium all the time, as my body needs to cleanse out from Monday’s treatment. Cleanse out the chemicals, the meds, the dead cancer cells, etc.

I’m so sad. So sad about what happened to my life, half way through my life. Some days I think about what it would be like to just stop this madness. Then I quickly stuff those feelings. I live for everyone else, not me now. I am doing all I do for everyone else. I don’t have that feeling of personal reward any more. My life is completely selfless now. I am treating and staying alive for those that love me and need me, human and animal. I hurt, inside and out, but I can’t give up or give in. I just can’t. Not yet…

I really feel the ravages of 10 and half years of Myeloma chemo treatments. I feel the toll the meds and the cancer itself, has taken on my body. I feel the tumors and lesions in my body. I feel like I don’t own my body anymore. Myeloma owns me. I wish I could just see inside and see how much Myeloma has taken over. I will see some on the MRI to come. But I “feel” the mass in my head. I feel how it is pushing on things inside my head. Headaches and head pain non stop. It’s not a “regular” headache. It’s different. It hurts. I feel pressure. Bones, nerves, muscles hurt too. Everything hurts. Yes, I am kinda scared…

So I am not sure if the Elotuz Emplicity is causing all the pain and muscle weakness. Maybe it’s the combination of oral and IV Dex steroids, as I take 28mg in pill form before my Monday IV infusion, and then along with the infusion, they give me another 8mg via IV. Who knows. I didn’t have this pain early on with the Revlimid. Maybe the pain is good news and means the meds are attacking the myeloma!!!

So in just 2 weeks, 
my IGA did come down a bit.
I am very fortunate that my body organ stats (ALT, AST, Bilirubin, Creatinine, Calcium, etc) still continue to be in the “normal” range. My CBCs though always are subnormal. WBC at last labs were 2.0! Reds low too. Platelets and Hemoglobin, just below normal. Chemo hasn’t been cancelled in years, so my Dr and Pharma team deem me “ok” for treatment. So crazy, as these are really strong meds. How can my body handle all these chemicals for so long. Well, “handle” is relative, as who really knows what’s going on in my bod, as the way I’ve felt lately… ugh… something is certainly up… But, as frustrated and sad as I am, I am also truly grateful and amazed I’m still here, and I always manage to get my head back together, even when I am having a “pity party”. 
Crazy, I still try to do a lot, too much, around our property, and I suffer the consequences, but there’s too much history and too many years of TLC invested here, to give up yet… Here’s a few cute pics from the last week or so.

First tomatoes of the season!
So many beautiful roses that Jim planted years ago
Mr Tortoise enjoying some salad
How dumb is this! Thought I’d try weed whacking
but wasn’t prepared for the power of the tool. 
Look at me in sandals LOL.
The sticker on me was from being screened at Kaiser.
I think this was after chemo, so I was on steroids
and thought I could be who I used to be :))
Sweet ladybug 
Jim’s Hibiscus from Hawaii
Well friends, so much more to share, but I’m beat up on so many levels. It takes me longer to write and post now, as I have so many “interruptions”, with everyone and everything needing me, as well as all my side effect distractions. Hope you are doing well, feeling well, and finding joy every day within all the challenges always challenging us.