Same Story, Different Day, Always Drama

6.30.20

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 :))

Best Buddies!!!

Promise I will update later today, unless I have DRAMA.... ahahahaa
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*****UPDATE!!!

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 :)) 

Pain here, Pain there, Pain Everywhere

6.20.20

Hello Everyone :))

Before I update you on what's going on now, here's a look back TEN YEARS AGO, as I was prepping for my Stem Cell Transplant at City of Hope. Ah, so Naive was I.

Back then, I didn't have the awful side effects I do now. Back then, Myeloma's viciousness and life sentence hadn't sunk in. Back then I was on an "Adventure" and in full Denial of the Seriousness of my situation. Back then, I was ridiculously Optimistic. Back then, I saw all my medications, appointments, labs, tests, consults, preparations for SCT as Challenges, Adventures and even new social events, as I met so many Amazing people at each appointment. That was just my nature. Julie the eternal Optimist. I genuinely had not fully digested the Seriousness of my Diagnosis. I had never been really sick, and when I was, I recovered "normally". Back then, just one foot in front of the other, humored by all the fuss, and always expecting a good outcome, nothing less. Back then, I was on 40mg Dex steroids 4 days ON, 4 days off, so I only had one or two lousy days, then, boom, hello 40mg Roids boosting me back up again. Back then, I still looked ok. Always being told "wow Julie, you look so good, you don't "look" like a cancer patient, you sure don't look sick!". Oh what a ride that was...

Back then, I and everyone else in my little and big circles had never heard of Myeloma. Back then, I spoke all the scary words of Cancer, Terminal, Incurable, "how long do you have", "wow, 70% myeloma", "High Risk myeloma", Chemotherapy, Chemo treatments, Stem Cell Transplant, Hospitalization, Side Effects, month long isolation and recovery, etc, etc. Back then, I laughed in the face of my diagnosis and continued to work, albeit a reduced schedule. Back then, I spoke openly and freely about my situation, to the shock of many. Most were more scared about me, than me. The only "real worries" I had, was I didn't want to have Upper GI sickness. I hate throwing up. I hate the out of control of being upper GI sick. I hate the words "throwing up", "vomit"... eeekkkkk... If I could avoid that, hey I could handle anything... back then.... yes back then I was so different than I am today.

Here's a walk down Memory Lane... my post from June 2010-
https://juliesmyelomamoments.blogspot.com/2010/06/

June 2010, my 1st, and only IV Cytoxan treatment

and the only chemo experience where I was (later)

GI sick :((

=========
2020... I am beaten. Beat up on so many levels, I have to be honest, it feels like Myeloma has won. I am beaten by constant pain. Beat up from non stop side effects. Beat up by pain. Beat up from feeling lousy 24 7, except on Dex steroid days. Beat up from the loss of my life, dreams and plans. Beat up from the constant, continual battle being waged on me, and the battle I have to wage, to just exist and stay alive. Beat up from trying to manage pain. Beat up by new fears. Beat up from loss of sleep due to pain. Beat up from wondering what the future will bring. Beat up from all the "What If's". Beat up from attempting to still be "me", then "paying for it" later, with instant pain. Beat up from Illness being my life and Jim's life. Our life, our illnesses is everyone's life around us. Beat up faking, trying to be me, and trying to do what I used to do. Beat up with so much responsibility, while feeling so yucky Beat up by wondering where all this going, what tomorrow will bring. Beat up by fearing movement, tweeking something, falling, tripping, moving, trying to enjoy just the little things, then having something always backfire on me, as pain sears through my bones, muscles, nerves, whole body.

Yes, I am beat up friends. Beat up from fighting Myeloma for over 10 years. Yes I take stronger meds now. Strong for me. I used to laugh about children's strength pain relievers helping me. Children's chewable Tylenol. Ha! Yes I have graduated to Adult Strength. First 325mg, then 500mg, now 650mg and more often. I have a drawer full of meds. I am reluctant to use them tho. Scared to try things, when I don't know the side effects or outcome. I tell my kids, I would like to take a muscle relaxant, or meds prescribed to me from before, what's that mood relaxer, Ativan? I just want relief. I just want to be pain free and have mobility without tweeking something. But I am afraid to try things, as I don't have "help" here late at night. At this time, I don't want to do the Opiods. Maybe one day I will "have to"...

I often think that if I take something at night for RELIEF, no one would know if I passed out, tripped, fell, died, etc, as Jim is completely incapable of caring for himself or me. I am not "lonely" at all, but I am sure "alone" after our awesome caregivers and adult kids leave at night. Last night I had my amazing daughter stay later while I showered. While I was in there, I was dizzy, in pain, and every movement hurt. I felt bad having her stay so late. She is happy to do so, but I feel bad. I feel my adult kids should have their own lives, and not have to be daily back up caregivers. I hate being Codependent. I hate not being Independent. But the pain. The limitations. The fears of "what if" when I am here alone... so I decided to take a tiny little dose of Dex steroids to get relief that Tylenol was not giving me. I always start with the lowest dose option to see if that helps. Half, 2mg of the regular 4mg pill. This is off-schedule. My weekly chemo regimen is 7 Dex pills on Mondays with additional IV Dex, for a total of 36mg weekly, along with the Elotuzumab/Emplicity, along with 10mg Revlimid at night. I had taken Tylenol through out the day. Only took the edge off, but the pain was ever increasing... I always have Dex as my Elixir, as my back up plan. Miraculously, I finally felt Relief a few hours later, but I still have pain. Pain in my bones, muscles, head, nerves, etc. But I don't feel like pounding a hammer to my head...

Yes, I am beaten physically and mentally, but I will forward march. I have to. I have to for everyone that loves me and needs me. Which is a lot of people and animals. And I will forward march, one challenge, one painful event after another, because I am also curious where all this absurdity is going. What will my head, brain, neck MRI show? What will be the treatment recommendations? Radiation? Surgery? More, new, chemo? Where is all this pain coming from? What is this new little tumor on my spine? What is all this excruciating head, neck, muscle, nerve body pain, along with killer headaches? I just want answers. I can handle a lot, if I know what's going on..

Thanks for reading and listening everyone. Hoping your lives are getting back to some sort of "new normal" or even back to "normal" for you. Hoping you are pain free, and free to be you. Free to live your life dreams and goals. Free to be you, and do that which gives you joy and passion. Move forward always. And like I always tried to do, try to focus on the "glass half full, not half empty". Just go away awful challenges...

chemo chemo chemo chemo chemo

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.