Changes Coming, So FRUSTRATED!

8.30.20

8.31.20

Hello Friends, 

Dr appt today, I will report back and update you on my lab results and plan...

(Update... No update, lol... Labs still not back yet. Dr thinks it's due to all the Covid tests backlogging everything in the processing Labs. Will update this update when I have my IGA and M Protein status back... but then again, the waiting is actually kinda nice, so I can live in LaLa land for a few more days... Haha... I know they're bad... see what I mentioned about my Beta2 Microglobulin below...)

I am soooooooooooo angry, sad, pissed, upset, devastated with my situation

Finally tho, I am feeling less pain in the areas of all my tumors and lesions

Finally less pain from (what I think) was caused by Elotuzumab/Emplicity

Finally month long fevers are lessening

All my labs (from my lovely visit to Urgent Care), came back NEGATIVE for any virus, bacteria, pneumonia, etc. Negative, everything Negative. No bugs and germs inside of me. Just low low low CBC levels.

Everything I am experiencing is from frkn Myeloma consuming me, and recent treatments

I am so sick of being sick!

Don't understand why I received this life sentence

I am not strong, I just do what I have to do, to stay alive

And that's not really effective any more...

I am exhausted, beat up, have little life (yes I am grateful for all that I do have), but I am so very very frustrated that Myeloma has stolen my life, makes me feel so sick 24 7, and is seriously trying to kill me. I had so many plans for this time in my life. Yes, sorry, I do whine, WHY ME, WHY ME?

Appears current Dex, Velcade, Revlimid is NOT really working. 

Shocker Julie, what did you expect, going backwards to 2 previous chemos you're Refractory to.

But did this cuz I just can't stand the idea of any more side effects right now! the Elotuz side effects just did me in. July and Aug worst months ever!

Cannot see all my lab results from Friday... that's another thing I'm pissed at. Patients should be able to see all their labs as they come in. But again, I understand they restrict "bad" results, because many people panic. 

Need to get my Dexified emotions under control for appt this afternoon

So much I am feeling out of control of, and I don't like it,,,

As just a hint of how bad I am: 

Beta2 Microglobulin at Dec 30.2009 diagnosis was 4.3 (70% myeloma cancer thru out me)

Current lab result is 5.7 (so I'm probably 90% myeloma cancer now)

OMG, this cannot be my life. Someone stop this awful movie I am in! Jim continues to decline daily. We moved his hospital bed into the family room the other day.

He can still get up with lots of physical help, emotional support, and caregiver muscle, but he's in a wheelchair if not in bed, needs help with everything, and of course everyone turns to me for help, recommendations. I cannot help. I don't want to help. I am so exhausted from me and my issues, (except on Monday 40mg Dex steroid days lol), I look awful, rarely fix myself up anymore, I don't want to be a facilitator, for anyone or anything right now, but I have to, too many lives here I am responsible for. I don't have the energy to help myself, let alone him, and all the responsibilities around here, but I don't have a choice. Seriously incredible all I still do and all I have done these past few months of torture and pain and fevers. (Actually incredible all I have done since my Dec 2009 diagnosis! Stupid me...) Jim's caregivers and our adult kids are so awesome with all the help they give us. They help with Jim's issues and all the household chores. Couldn't do it without them. I feel so bad how much I rely on our kids, now for driving, chores, counseling the counselor, chores and more chores... but they are happy to help around their work schedules. They had an incredible life growing up, and they are happy to help us now, as the roles are reversed. Never thought it would be like this "so soon". I was supposed to need help in my 80's lol, not 50's and 60's .... 

Sorry, I could rant forever with all my pent up emotions. Never been so frustrated, sad and out of control in all my life. I am not the Julie you all once knew...

Ok, need to make a list of my next myeloma medication options to bring to my Dr. I will try to rein in my emotions, so I don't lose it with her...

Thanks for reading and caring and commenting. I will write this blog until I cannot. Have even been thinking what my "last" blog post might say... 

xoxo Julie 

Hate You Myeloma

8.20.20 

8.21.20

Hello Friends, 

Been too sick to post and don't have much energy today for the stories I wanted to tell you. My "rescue dose" 2mg of Dex steroids I took before bed last night still gives me a bit of energy and lowers my fever and inflammation and pain, so I can do a mini post. 

Been 3 weeks with non stop fever. Began in the 99's and continued to escalate to a high of 102.9

Yes, finally went to Urgent Care last Friday Aug 14. One good thing that came out of that was a NEGATIVE COVID TEST. All other labs looooooooow as usual, and especially Electrolytes since I just haven't been motivated to eat or drink much, but I do force myself. Medical Team was great, but all my labs scare everyone outside Oncology, and they "panic" and tell me to immediately get to ER!  Call and Ambulance now!. Go to your Local ER now!. Go to a Kaiser ER now!. Get to ER now!. Ummmm, NOOOO, I'm not going to die alone, I'm not going to die in a hospital. Stupid Corona Virus. But I understand the Visitor Policy complicating things for patients like me. And with my Alz husband, I can't just leave. His decline is horrific. Mostly forgotten how to walk, eat, drink, etc...

They did a chest Xray and there are vocabulary words on here that I have never heard of...

You'll have to Google the terminology, unless you're a medical professional or know a lot of human anatomy and physiology...

I can't even describe the daily, nightly suffering. Yes, meds help, but you all know what a fever does to you. Fortunately on Monday chemo days, I still take the 40mg of Dex, so my temp is Normal that day and into Tues... Then comes the crash on Wed. This has been going on since the beginning of this month. I don't have any other symptoms. No cough, no sore throat, no nasal issues. Nothing but an awful fever dragging me down, making me feel awful 24 7. The Clavicle pain has lessened, but still there on the Right side. My Radiologist wants to Radiate that side, but I can't take another frkn thing right now. Yes, I am still doing the chemo triplet of  40mg Dex steroids, Velcade shot and 10mg Revlimid for 21 days. I Cannot Not Do chemo, as not doing anything will allow myeloma to win, which I think is happening anyway, but at least I am putting some poison in the fight still... Will do myeloma status labs in a week or so for my end of the month Dr appt. Not looking forward to those, as I suspect my IGA will be out to the moon. You wonder why I don't pursue this with my Drs,.... if I have a fever, I can't do chemo, and like I said above, No chemo, Myeloma wins....

I really don't have any good news, or positive news. I've been battling this monster officially for 10.9 years now, and probably many years prior. My bones are invaded and being eaten away. I hurt inside and out. I have no life, my life is stolen. I can't do anything I used to do, and I mean basic things like chores around the house, animal chores, showering is a drama, etc. It hurts to do anything, or I am too weak and dizzy to do anything. Can't do things outside or with my animals. Eating is forced, everything is forced. I am sad and angry. This was not supposed to be my life. It is pitiful and tragic to see Jim decline in such an awful way too. This once strong, capable of everything for everyone guy, is basically a blob now. I won't give the ugly details. Just read end stage Alzheimers. 

Thanks for reading,... and I hope your life is waaaaaaaaaaaay better than mine.... 

Seriously Myeloma, What Other Suprizes Do You Have Planned for Me!

 8.10.20

Hi Friends and loyal readers-

I almost wasn't going to post today, as my suffering has been OFF THE CHART for weeks, months. You know when your Nurse or Dr asks you your level of pain from 1-10 scale... well I tell them mine is near 1000!!! No joke. The suffering I have done since I tried Emplicity Elotuzumab, is insane!!! Well not to bash that chemo in any way, as I'm sure it's been a lifesaver for many, but just as I had an insane reaction to Zometa in 2018, whatever Emplicity does chemically, biologically, Wowzzaaa ooowwwzzzaaa, it sure did me in!!!!

So to recap...

Sadly, Cytoxan (400mg of pills weekly) with Velcade shots with Dex steroids (40mg weekly) stopped being effective for me in May 2020. So that's when my Dr wanted to try Elotuzumab Emplicity with Revlimid and Dex. I was not thrilled with changing, but agreed as my IGA was creeping into the mid 2000's. 

Within a few weeks I noticed muscle, nerve aches and pains, but wrote it off to the new med changes in general, thought it would disappear as my body got used to it, and just suffered thru it. I remember shortly after beginning Elotuz, my Left thumb joint area suddenly swelling big, and becoming very very painful. Thought maybe I did something to it with all the ranch chores. Thought it was odd as the pain began to move and migrate up my Left arm, then into my L shoulder area, then into my collarbone, growing a HUGE tumor on my L clavicle and chest area instantly!!!!! When the size and pain was so crazy intense, never subsiding, that's when I told my Dr about it, commencing all the xray, MRI scans, as I've written about in previous posts. 

Well... the rest is history, with all the unrelenting pain, pain medication adventures, etc. Then a week of Radiation, last week of July. Then recently... surprising low grade 24 7 fevers, with more intense pain on my Right side, then more xray scans, and finally today, first Velcade shot of going backwards (my choice, my request) in this new treatment regimen.

So since my last post, I developed a low grade fever. non stop, 24 7 for days and days and days and days, etc. Vacillated from 99 - 100.4  Can't tell you how absolutely AWFUL it's been. Fevers on top of excruciating pain... "Just Kill Me Now" I would sometimes say... but then quickly take my words back, as I'm not quite ready to let Myeloma win. But there were many desperate days and nights, I just didn't think I could take it anymore, and I still can't. Only reason I can post and type right now, is thanks to 40mg, (ten pills) of Dexamethasone Steriods this morning!!! Haven't had a Tylenol since this morning. Just typing hurts. I just can't get over how bone tumors and myeloma lesion pain, along with fevers, is just the most awful thing to live with...

So my new chemo regimen is the ole myeloma first line of treatment of Revlimid, Velcade, Dex. I skipped this regimen in 2010 as good ole Dex steroids and Revlimid alone brought my IGA down in a flash, prior to my SCT, and then I did lowest dose Rev maintenance for 18 months, and then resumed Revlimid again when out of Remission in 2013.

So we'll see how this goes, but honestly, even if my numbers stay the same, or even escalate a bit, or roller coaster, I'm NOT SWITCHING CHEMOS AGAIN ANYTIME SOON. THIS PAIN HAS DONE ME IN!!!

Oh, you probably want to know about the fevers? Yes they came on fast, but low after Radiation, rose from 99ish to 100ish daily. Yes good ole Tylenol brought it down, but I know that's just a band-aid on some sort of bigger issue. What the fever is, I don't know. Never went to Urgent Care about it,... you know why??? Because I didn't want chemo cancelled. If I don't do chemo, I die. Very simple concept for me. Yes I know I should have been checked. Yes I know it could be an underlying issue (infection?) that could be as serious as not doing chemo. Yes I know not treating is not always the smartest thing, but I watch and wait very very carefully, and if it had continued to rise to 101 let's say, I would have consulted. But again why? I won't go to a hospital because, #1 I don't want to die there, #2 my family wouldn't be allowed to visit me, #3 and what really can they do for me there, that can't be done at home??? 

I ask Jim's home health care nurses about the difference between Pallative and Hospice care. I could be eligible for both. Don't want to go there yet. But honestly friends these last few months have really really tested me. I haven't been able to be me, or function at all. Everything, and I mean everything became a super painful choice. Even with medication. Everything was just torture. I got so I couldn't change my T shirts, couldn't shower as I couldn't lift or turn my arms. Sleeping was was never refreshing. The pain woke me up, I couldn't sleep in any other position but semi upright, with many pillows propping me up. Not fun. If I turned by mistake, yikes the searing pain startled me awake, not to mention, fearing fracturing my clavicle collarbone or ribs more. 

I didn't go outside, as nothing was fun anymore, as everything caused me pain. Yes, I tried Norco, Percocet, different muscle relaxers, steroids, different strengths of Tylenol.  And now I have more clarity as to why i have all this PAIN!!.... I found out from my xray scan yesterday... I HAVE MORE FRKN FRACTURES IN MY RIGHT SIDE CLAVICLE COLLARBONE SHOULDER!, in addition to the LEFT SIDE I JUST HAD RADIATED, ALONG WITH MYELOMA LESIONS EVERYWHERE THEY XRAY. YEP, ALL THIS PAIN IS REAL, and that's why I've been in so much PAIN. Get this description of my fracture type! Unreal!

What would cause a Comminuted Fracture? ...A Comminuted fracture is characterized by the breaking of a bone into several small pieces and is the result of high velocity injuries, such as car accidents, falls from a height, or high-energy injuries with tissue loss caused by fragments from explosive devices on the battlefields.

Fractures of several types, Comminuted fracture, lesions, holes, masses, demineralized bones, clivus eaten up, etc etc. It's no wonder I haven't had more pain over the years with myeloma eating me up like termites to wood!!! Just Google some of the specific wording in the reports. Blew me away!

"A comminuted fracture is a break or splinter of the bone into more than two fragments. Since considerable force and energy is required to fragment bone, fractures of this degree occur after high-impact trauma such as in vehicular accidents."

And...

Paravertebral extension usually occurs with aggressive, malignant lesions, but it may also be encountered in benign lesions in the presence of a pathologic fracture. Certain expansile lesions tend to occur in a specific region of the vertebral column. This may be an important clue to the diagnosis. 

WHAAAAT??!!! JUST CAN'T MAKE THIS STUFF UP!!! HELLO PAIN... I UNDERSTAND NOW. ... BUT I HAVEN'T BEEN IN A VEHICULAR ACCIDENT... YESSSS MYELOMA YOU ARE MY HIGH IMPACT TRAUMA!!!   

Hello Lytic Lesions, you've been Radiated already!!! 

Ok Friends, I'll just leave it here... my myeloma journey just keeps getting more interesting and challenging daily... just can't make this stuff up. You Myeloma can just stop now, and give me my life back. I don't ask for much. Just pain free, with the ability to just move around slowly, and do what I want when I want, without feeling like a zombie all the time, because I hurt so much, and feel feverish and sick all the time. Oh how I took my early years with Myeloma too smugly.. how Myeloma was raging in the background, but the chemos I was on suppressed everything better than it does now.  Well it was eating me up, but for some reason, the pain from all the lesions just wasn't as intense until Zometa in 2018 and now Elotuzumab, May, June 2019... but I will fight until I can't...

 

May your summer be full of fresh air, warm summer nights, with the moon and stars shinning brightly on you, surrounded by those you love and care about.