Hello Friends :))
Yep, Same Story, Different Day. What a story it is, what a challenge it is everyday. Life just didn’t pose all these crazy challenges for me, us, our family back in the day. Yes I know, life changes all the time for everyone. But our story evolves on a level CRAZY daily. Yes, we all change mentally and physically daily. But I worked so hard to NOT HAVE DRAMA in my life, and now that’s all I have. Why? Why Life, are you doing this to me. Truly, I am not “doing this”, or “causing this”. I am so careful and cautious with how I live my life, and so are those around me. I’ve never been a “risk taker”, and always thrived on safety, security, happiness and moving forward in positive, thoughtful ways. We always took measured steps in most everything we did, just to avoid drama. Now drama seeks us out!
Everyday I wake up, wondering WTF will happen to us today! I’m still the positive, optimistic gal I always was, but “I know” things will never be calm and predictable again. As I’ve written before, I specialized in calming drama for everyone else in my personal life and professional life. I was a problem analyzer and solver for those that sought my counsel. But now so much of my life is totally out of my control in ways it never was before. I didn’t “cause” Myeloma to happen to me. My body biologically sabotaged me for whatever reason I will never know. Jim did not “cause” Alzheimer’s to happen to him. His body sabotaged him. We’ll never know why this happened, why our bodies changed on a biological, cellular level, but I do know, we did not do things to “cause” these awful deadly illnesses that have completely taken over our lives. Just so so sad…
I’ve met many “risk takers” in my life and am fascinated with how they think and the challenges they take on, and how taking risks invigorates and energizes them. I think of extreme outdoor sports, people that just pick up and move to another state, another country, people that change careers often, travel all the time, those that redecorate their houses all the time, those that take business and personal risks often. Of course there are all the stupid and thoughtless risks people take, causing horrible, life changing results to themselves and others. But that’s just selfish stupidity. I never took big risks with riding horses, skiing, biking, lake sports, etc. I was always safe and cautious, and have only been mildly injured in the past. Ironically, no broken bones from fun. But now, how ironic, daily bone issues from stupid myeloma.
I observe others. Always have, always will. I think about all the risks and stupid choices some make. And so often, with little or no consequences. People that don’t take care of their bodies and minds. People that don’t respect themselves and others. And they’re well and doing fine. Drugs, drinking, not eating well, stupid choices, etc, and they’re doing fine. Me, diagnosed with deadly cancer at 50. Jim diagnosed with life stealing Alzheimers. Makes zero sense. We just wanted to enjoy the simple things in life, and all has been stolen from us.
I was awakened early yesterday morning with scuffling noises in the family room, where Jim sleeps in a chair. The little doggies sleep there with him. But as I heard the scuffling sounds, I also heard the little doggies coming down the hallway to my bedroom. I hear their cute clicking feet and clinking ID tags. Often they come separately, but this time, the 2 of them came together and wiggled at my bedside. Oh boy… something’s up, as I tried to clear the sleep fog away… yep something’s up… and it’s only 5:30am!!!
Grrrr, not happy… but up I went, and what do you think I found?? Yep, Jim had managed to scoot the wingback chair backwards towards the kitchen and managed to get himself out of the chair, and up the step, but then FELL ON THE FLOOR RIGHT BY THE GLASS turtle terrarium!! I have NO idea how he didn’t break the glass, as his head was on the side of the glass, and his body flat out on the floor. Crazy how every time he’s fallen, he never gets hurt! Sometimes bruised up, but never anything broken. Insane how strong his body still is. If only his mind hadn’t failed him. Well, I wasn’t happy, and I’m not the nicest person when woken up suddenly, especially with all the bone, muscle and nerve pain I have. And there he was flat out on the floor at 6am!!!
See Jim’s head on the GLASS Turtle Terrarium!!!
OMG, what could have happened…
And all my stories need to be continued later, as I have my stikn head, brain, neck MRI soon… eeeekkkk, wish me luck that I don’t have a bad reaction to the Gadolinium contrast… wish me luck that it’s all a mistake and I don’t have a 36x37mm mass in my head…
And I have not so happy IGA news after 6 weeks on Elotuzumab Emplicity, Revlimid, Dex
And we have a new rescue doggie, and she has quite a story :))
Meet Coco :))
Promise I will update later today, unless I have DRAMA…. ahahahaa
OMG- I never asked how long the MRI would be today! Silly me, I always underestimate the “seriousness” of my situation, and go in thinking, “oh this will be nothing”, and then The Nothing, Turns into SOMETHING! This stinkn MRI took about 3 hours today!! I went around 1pm and didn’t finish the scan until a little after 4pm. I certainly did not expect that! I knew I would be doing the MRI “without” and “with” the Gadolinium contrast, but I never put 2 and 2 together, that it would be 2 full scans. Well logically I did, but in terms of time, never did. So long story short, I did the “without” contrast first, and all was fine for a while, but after while I developed a pressure point on my head, that drove me nuts with pain, while lying there perfectly still. Of course it did, as that’s the problem I’ve been having for months now, duh, and the reason why I’m getting the scan. I waited until I couldn’t stand it any longer, and when the Tech asked me if I was ok, I said “NO”! Problem with stopping the scan, is I would have to reschedule and come back… hellllooooo NO! So without making too much adjustment, he was able to put a little padding on the flat area, where the head pressure point was killing me. If you’ve ever had a MRI you know how narrow the tube is, and how you have to lay there perfectly still… this became almost impossible for me to do with the pain. I’m not anxious or claustrophobic, this was real pain from the pressure of my head immobilized in the position it was.
The Tech reassured me that this part of the scan was almost over, and could I make it thru the next one, or would I like to reschedule. Oh nooooooooo, I don’t want to reschedule and come back. Let’s do this, and get it over with, since I had put it off since January due to all of Jim’s issues, then the Virus complications, and also me just being me, and thinking this head thing wasn’t a big deal. Ha! Payback Julie. Never underestimate the power of Myeloma trying to beat me up and kill me.
So up next was the Gadolinium injection. Yes I was scared I was going to have a reaction, and here I was an immobilized sardine in a narrow tube, with a helmet like head gear thingy on me. Oh gawd, help me. What have I done to deserve all this torture for 10 and half years now… ok Julie, just shut up, put up, and battle on. Needle into my left arm, Gadolinium in… anticipation mounts… will I have a reaction, will I be ok… Here we go, scan #2…
And I was fine! Whew, no reaction then and still as I update you at this late hour. Thank you body for not betraying me today. So there went another 45 minutes of detailed scanning, anticipating something, but all went ok. Clink, clank, bing, bong, clickity, click of the MRI machine. Did I really do that for the length of time I did. Wow! I’m just so beat up from 4 hours of chemo yesterday, 3 hours of MRI scanning today, and the beginning of chemo crash symptoms. Ah Myeloma, your gift just keeps on giving.
My MRI tube
See the frame where my head had to be placed and remain perfectly still
and the head helmet brace thingy put over my face.
I guess I’m stronger and braver than I give myself credit for…
So it’s done, and all my Gadolinium worry is now in the past… well I hope so. Let’s see what happens by morning. I did take 2mg Dex steroid this morning, along with non drowsy antihistamine, and some Tylenol. I’ve learned the advantages of “premeding” from all my years of chemo infusions. Smart, huh! I received a CD disc, and tomorrow I will try to make sense of it. Haven’t had much success in the past, as the scans all look like outer space alien views to me. Who knows what’s lurking in my head… have a Dr appt July 14, but maybe she’ll call me before then to give me a “head’s up” (ha ha pun there).
And finally, look at these lovely IGA results showing that Elotuzumab and Revlimid are doing nothing to stop the forward march of Myeloma. Dang it… what to do next?? Maybe go backwards and try Velcade with Revlimid, as I never did that front line, first choice option back in the day…
Ok, can all this just be over, and I go back to my pre-myeloma life… maybe not, as numbers don’t lie:
Yikes, up up and away we go
So that’s my story. Jim of course is just fine from his fall, and doesn’t remember a thing. He never breaks anything, or hurts himself when he falls. Totally amazing, as most oldies wind up in the hospital from falls. Not my guy. And how he grazed the glass turtle terrarium and didn’t break it, and slice his head open, I’ll never know… wow! He’s gonna outlive me!
Thank you for reading and caring about my life and stories as you do :))