Radiation Radiation Radiation- Zap You Myeloma

7.30.20

Hello Friends-
Been quite a couple of weeks, months…
Pain, Pain, Pain Extraordinaire!
Assessment Assessment Assessment
Suffer Suffer Suffer
Brought to the brink so many times
Pain is way too humbling
I was too smug for too long, thinking I was dominating myeloma, ha!

I can take a lot, but all this pain and scan information of my crumbling bones, spine, neck, clivus, skull has really challenged my strength…

Radiation all this week… Thank Goodness! Zap and kill those cells!

I’ve been doing 20mg Dex steroids daily to get through this. I have to have mobility and pain relief to get on to the treatment table and in the correct, exact position. Thank you killer steroids for helping as an anti inflammatory! But yikes, I am so bloated up from this dose, and feel so FAT. Can’t wait to get back to “normal” hahahhaaaaaa. Normal, hahahhaaa… never again, sadly :((

Hoping for relief
Hoping to kill some myeloma cells
Hoping to untangle all the angry nerves and muscles wrapped up in tumors, lesions, holes, masses, etc. I feel so fragile, and hate being so limited.

I just didn’t think Myeloma would eat Me up like this… I’m always thinking “I’m different”, that I will defy the odds… (well actually I have with my almost 11 years (probably a lot more) of survival…  But, cancer and myeloma just doesn’t care who you are, how much you try to be ok.,. how positive you are, how informed you are, how well you are treated, how much fight you have, etc. Myeloma will just gobble you up alive… biology and chemistry is just so powerful, and we only have so many tools in the toolshed to fight back… Thank goodness for all the brilliant medical science researchers out there always researching the next option for us.

https://www.cancer.gov/about-cancer/treatment/drugs/multiple-myeloma

https://www.myeloma.org/multiple-myeloma-drugs

https://themmrf.org/multiple-myeloma/treatment-options/standard-treatments/

https://www.myelomacrowd.org/myeloma-news/

If you have your Health, you really do have “everything”… if you don’t, you don’t. Real Pain, deep spirit killing pain, prolonged pain, limiting your life and movement pain, just steals your life, energy and optimism…

Here’s my recent Radiation pictures, and I will update the whole story with what the heck is going on with me…

Best care ever at Kaiser!
Best son ever driving me to my appts
Can you find all my holes, lesions, tumors, mass?
Let’s get this Radiation party started!
With the damage to my Clivus, spine, skull, neck area
I’m in danger of becoming a “Bobblehead”! or worse, 
Paralyzed from a break!!!
Rods, pins, surgery, Kyphoplasty  
If radiation doesn’t work??
Git er done Radiation!
Zap those crazy myeloma cells
Ouch! This crazy Clavicle mass, hole, tumor
with the muscles, nerves pinched and wrapped around and in it
Such intense, immobilizing pain
Best caregiver, driver, chore daughter ever!
Can you find all my holes, lesions, mass, tumors? 
Wish I knew how to really read these scans
Don’t move Julie!
Wow, then they snap this mask in to the table
to hold me steady, whew
If it’s not perfectly aligned…
Owwie!!!
Such amazing Technology
LOL, didn’t intend to match so perfectly!
And I’m all ready for Halloween
Do you have a Mask as cool as mine :))

Myeloma Beacon Patient Stories:
https://myelomabeacon.org/tag/patient-column/

Love Dr Durie of the IMF – International Myeloma Foundation
Great question and answer videos re everything Myeloma!

My Stolen Life…

7.20.20

Hello Friends,

My physical PAIN suffering is off the charts. This bone, muscle, nerve, tumor, lesion, mass, myeloma cancer pain is doing me in. I can’t even convey the level of pain, and how I hurt, and how simple everyday, ordinary tasks hurt so much to even attempt to do. I ache so much. I cry too often now. I cry from physical pain. I cry because I am so very very sad about what has happened to me that I have no control over. Myeloma is in control. Myeloma is eating me up like Termites to Wood. I’ve never been a “crier” as I never let things build up inside. Nothing wrong with crying. Clears the soul in many ways, but not this time. Even crying hurts. Hurts physically. Serves no purpose for me. Sobbing last night, I stop, and say, “just Shut Up Julie, just Shut the F up Julie, no one hears you, no one can help you, just Shut Up Julie, crying servers no purpose and just tenses your body even more, just shut up Julie”… I grimace, I deep breathe as I try to get into bed… I hurt so much… I stop crying and eventually fall asleep for a few hours…

It hurts to brush my teeth, to lift my arms, to move my head, to bend my arms, hands, neck, etc. It hurts me everywhere my upper body moves. It hurts on both sides of my collar bone and shoulders and arms, up my neck and in to my head. Everything I want, need to do is stolen from me. I want to do chores, clean my house, do laundry, shower, change my clothes, do animal chores, lift food to my mouth, open medication containers, water the plants, fly spray the horses, clean the corral, do inside animal chores, do anything I used to do so easily. Reaching to wash my hands aches so much. I feel the nerves, muscles, tightening, tearing, hurting so much with this simple, so needed task. I do it anyway. My eyes tear in pain. My heart skips a beat in physical pain and mental recognition of my situation. I just want to do simple things in my life. I can’t drive right now. I am dependent on others. I hate that. My wonderful adult kids have been driving me to Dr appts and lab tests. I hate being dependent. I hate needing, asking for help. I was always the Helper, not the Needer.

Little controlled me before Myeloma… now myeloma controls every aspect of my life, my being, my days, my nights. I cry from pain. I cry from feeling so out of control. I cry from feeling desperate for relief. I cry because I just hurt so much. I cry because I force myself to do things. It hurts to do anything I used to do so easily, so presumptuously. I cry because I am so limited with pain. Typing this painful. Everything I attempt to do creates excruciating pain. My life is stolen. The ability to do simple tasks has been taken away from me. I don’t understand what happened to me. I don’t understand my suffering. I don’t understand why I am being so tortured. Yes, why me? Why life? Why, I cry out…. I “ugly cry sob”. This is not how I imagined this time of my life…. I cry out how I “hate my life”… I correct myself… I don’t hate my life, I hate what my life has done to me, what my body has done to me, what myeloma has done to me, what cancer has done to me… why? why me? I am so sad…

LOOK AT THAT! BONE PAIN… 
I’m not imagining this. Bone pain is Excruciating!
Think about all the things you do. Little, big. routine, required, fun. Things we all take for granted, and assume we can always do. Think about how each and every one of those is now a huge painful challenge for me. Simple things, huge pain. Huge ridiculous, painful challenges. My stolen life…
I must take a break here. Typing and using the mouse hurts so much. But I have a story and pictures to share with you of my first Radiation consult from last Thursday July 16… here’s a hint…
Yep, that’s me in there!
I’ll be back in a few hours, promise, as this story has a super funny twist :)) 


!!!! Updated below :))

And I just got notification of lousy IGA upward moving stats :((
720 points up in just 10 days without chemo

Grrrrr!@#$%%+*** !!!!

UPDATE :))
UPDATE
UPDATE :))
So this last Thursday, my son drove me downtown for my Radiation planning consult appt. With all this stikn pain, I can’t drive myself anywhere, as I don’t have the ability to move fast, turn, react, etc. Not doing LA freeways in my condition. 
I wasn’t sure what they were going to “do” with me, thought this was just a verbal “planning” appt. Turns out, I needed another CT scan for the awful Clavicle, collarbone, shoulder pain. Makes sense, just didn’t know it would be done. When the Rad Tech explained what the Plan was, I was… oooohhh nooo, I can’t possibly lie down flat on the CT table for a scan. The pain would launch me to never never land, and I probably couldn’t get down or up from the narrow table. Well obvi Julie, if you can’t do the scan, they can’t move forward, so I convinced myself to absorb more torture and agreed. 
I remembered I had a little pill container with Tylenol in it, in my purse. So I CHEWED 2 “generic 325” Tylenols. Scott’s laughing that I just chewed them, but that’s what I do regularly now, and have for a long time, as 1- it takes affect faster, and 2- I just don’t swallow pills well anymore, as I have to swallow so many, and I sometimes just can’t swallow them without my standby protein shake drinks (like Ensure) … After I chewed the 2 little white pills, something made me look back in the bottle and check what they were. OMG there was one left, and it DIDN’T say 325!!! It said 512… Google that friends…
From Google: “People ask…
OMG, what the F did I just do. I’m laughing, scared and laughing. Scott’s incredulous of what I have done, and says, Wow Mom, you’ll be feeling pain free in no time”… ahahahaaa
I asked the Tech and Nurse for water, and explained to them and the Dr what I just done, and they laughed too, and weren’t worried, even though I explained I’d never taken these before, and that they must have been my husband’s RX from a while ago, for Spinal Stenosis and his venous ulcers from his blood clot destroyed leg… 
OMG, I turn myself into a science project all the time. Just couldn’t believe what I had done, and really the only worry I had, was if I had a GI reaction… can you imagine becoming GI sick, while restrained on the CT table. OMG, Julie… the drama never lessens. 
So I went with the Rad Techs to the CT room, not feeling anything different at all, got onto the narrow, sliding table with their help, and waited for a reaction. And I waited. And I waited. And I waited. LOL nothing. Nothing from Norco a week or so ago. Now Nothing from what I found out was Percocet. Nothing. No high, no low, no extra relief. Probably the only relief I got was from the little bit of Tylenol mixed with the Oxy. So I made it through the scan, and also through the forming and fitting of the personalized head protector, mesh head stabilizer mask with no drama, no issues, with no notable fun druggie relief feelings. Nothing, no extra pain relief at all. How crazy is that. Nothing lol. Nothing. 
All this confirmed again, my magic formula for nerve, muscle, bone pain is DEXAMETHASONE STEROIDS, with plain and simple Acetaminophen Tylenol and Flexeril muscle relaxant. And those really don’t do much either. Just takes the “edge” off. Would have to take double dose of Flexeril to probably really feel relief. But I won’t do that to my body….
Guess this cowgirl has a pretty high pain tolerance and pretty high resistance to drugs lol.  
So I go back this coming Friday for the final mapping and maybe my first Radiation treatment. Bring it on, can’t wait. Let’s git er done! Zap these outta control myeloma cells causing me so much pain and grief! 
The things I’m able to do.
Thank you Dex steroids and Tylenol
Pretty cool how they make the mask.
Wasn’t expecting that at all. 
It’s a soft plastic mold, that is mold-able, pliable in the beginning, to shape.
As the Techs put it on me, they told me it would warm, steamy and damp.
And gooie. 
Felt kinda like making a dental mold and having a facial at the same time.
I’m ready for Halloween now!
And I get to keep this party favor when all my radiation treatments are over. 
I still can’t believe this story is my story
And we have a new rescue doggie
She’s the black one. 
She’s from Arkansas.
Only one missing in this picture is our
brown Lab
The craziness never stops here, but it sure keeps me going!
Yes, every day is an adventure here. Horrible and Wonderful at once. How was I able to post this today? DEX STEROIDS from this morning, thank you very much my fave friend. My arm is killing me still, my neck is cramped, the clavicle tumor bumps against things when I move, and my muscles and nerves burn and pull and hurt, but less than last night, or yesterday, etc. 
Dr consult tomorrow and I will insist on being back on some sort of chemo. I feel very uncomfortable letting the myeloma grow outta control while waiting for the Radiation to be completed. Chemo is systemic and kills the myeloma throughout the whole body. Radiation is targeted to the specific areas of my current pain, tumors, mass, lesions, holes, etc. 
Earlier the Pain management Pharmacist called and we talked about my pain med options. She was incredibly helpful and encouraging. When the Dex steroids wear off, I will try the Norco again. Or not, not sure. We’ll see. I’ll let you know. 
Thank you for reading and caring and following my crazy almost 11 year myeloma story. Hope you are doing better than me, and doing ok in these crazy Virus times. 

Categories Uncategorized

Just soooooooo Beat Up :(( … UPDATED 7.11.20!

7.10.20

Hello Friends,

So much to share…
Pain is off the chart
MRI results: Holes, Tumors, Mass, Lesions
Skull, spine, neck, collarbone
Crazy painful swollen awful tumor bump protruding on L side collarbone clavicle driving me nuts- wanna see a picture of it?

Radiation coming next week forward
Myeloma is eating my bones, like Termites to wood
Finally gave in and tried Norco; not even making a dent in the pain lol!

Took Labs Thurs July 9
May have results to share
I think it will be GOODBYE Elotuzumab Emplicity, as I think you are the Pain Culprit, and not really doing me any good anyway
Decisions to make re next line of treatment
How about going backwards to good old Revlimid, Velcade, Dexamethasone… skipped that firstline option back in the day
Hate switching to new meds
Hate the unknown side effects out to get me 
Just hate you Myeloma for stealing my life
I’m so beat up, so discouraged in so many ways, scared in ways I haven’t been before
But looking forward to Radiation to put this Humpty Dumpty back together again
I just want to live
Live a calm, peaceful, pain free life
I don’t mind being on chemo for life, so used to it now
Just want freedom of movement and to feel good a few days a week
Is that too much to ask Universe!
I’ll be back with the details, Dr reports, and a bit of reminiscing about my 10 year Stem Cell Transplant anniversary on July 5th! Wow, 10 years ago where I was, what I was doing, and what my body was doing to me… guess as bad as things are now, I sure wouldn’t want to be where I was then, as the Melphalan chemo was totally crashing my system, and wow, was I sickie. Have linked my July blogs below…
Too be continued….
…..

7.11.20 **** UPDATE !!!!!

So my Left side Clavicle, Collar Bone area continues to do me in. I feel so disabled, but still trying to be me, and do something, anything around here. I feel better if I can move around, as sitting or reclining or trying to sleep is even more painful. I’m beginning to wonder if this DRAMA began with the immobilized position I was in for so long for the MRI scans back on June 30. Seems as if it’s a knotted bundle of muscles and nerves wrapped around a tumor, pulling and tweaking EVERYTHING :((( Here’s a lovely picture of it my daughter took the other day. I’ve been trying to carefully stretch, bend, creak, tweak, crack, move on my L side, but this is just so dang painful, and limiting. Amazing how our anatomy and physiology is such an incredible interconnected machine. Which is wonderful when it’s healthy, but so awful when not.
Hilariously, I did try a Norco 5mg/325 on Thursday night, and it literally did NOTHING for me! Didn’t even take the edge of the pain, or give me any woozy, relaxing relief. So who needs that stuff, if I just have to take a larger dose. Plain Tylenol, Advil, muscle relaxer Flexeril AND my BEST FRIEND EVER Dexamethasone Steroids, seem to be the best treatment for me. I just need Anti-inflammatories!!! I don’t have an “addictive personality”, so I was never worried about taking the Norco. All I want is to be pain free, without meds. I don’t “need” anything to boost me up when I feel ok!!! Feeling ok for real, is the BEST feeling Ever!!!

And did I mention, the disabling pain is so awful, I’ve been using my hubby’s remote hospital bed to sleep in, as I can’t get in and out of a normal bed with the intensity of my pain. I use the side bar and vertical head lift position to get in and out. He hasn’t used it in months, after his weird seizures earlier in the year. He does better sitting up in a chair. We’re a crazy train wreck… Ridiculous and unreal!

So the main concerns my Drs have is the bone damage in my neck, skull base, skull bones, R side head, etc. Thankfully, my lovely mass is NOT a brain tumor, but a mass, tumor, holes, lesions, etc, in the skull and bones. Areas I have read and reread as I never fully learned detailed Anatomy and Physiology. Just took sooooooooo much for granted, as we all do, when we are Well!!
Here’s a summary report of about 20 pages of MRI, CT, Xray reports. Main areas of concern are the: clivus, foramen magnum, chordoma, You can Google those, as there’s so much info there, my head is spinning. OOpps, shouldn’t use that term, as that’s what will happen when myeloma cracks all those body parts and my head starts spinning on it’s own. I’ve become a “bobble head”!!

=======================================

RECENT IMAGING Report
June, July 2020
6/30/2020:
MRI BRAIN: There
is abnormal bone marrow signal within the clivus which enhances heterogeneously
postcontrast. There is also abnormal enhancement within the
right side of the skull base at the foramen magnum.
There is no
intracranial mass or intracranial extension from an enhancing right skull base
tumor involving the clivus
.                              
In a patient with
known multiple myeloma, metastatic disease is most  likely etiology…
 Other skull base lesions including a chordoma are not excluded
6/30/2020: MRI NECK:
Normal soft tissue
neck MRI pre and postcontrast.
                    
There is bone marrow
replacement within the clivus most consistent with metastatic disease in a patient
with known multiple
myeloma.
          
6/30/2020: MRI C
SPINE:

There is age expected cervical spondylosis that causes mild C4-C5 and mild
C5-6  central spinal stenosis. There is abnormal bone marrow signal
replacing the clivus.
There is patchy enhancement in the cervical vertebral
bodies consistent with the patient’s known metastatic disease.  



7/5/2020: XR LEFT
CLAVICLE:
The bones are
demineralized. There are 2 well-defined lytic lesions of the clavicle lesion of
the mid clavicular shaft
, unchanged from the prior CT scan. There are no
fractures or dislocations. There is mild degenerative change of the AC joint
.      
PHYSICAL EXAMINATION:
GENERAL: She appears
well in no acute distress. Speech is fluent and
coherent. Cognition is
normal.
ASSESSMENT: 60 year
old female with progressive myeloma with left clavicular pain and neck pain.
Recent imaging showing clivus, cervical vertebrae and left clavicular
involvement.
RECOMMENDATION: A
lengthy discussion took place with the patient. Offered palliative radiation
therapy to the clivus/c-spine region and the left clavicle areas
. The
indications for radiation therapy in this setting were discussed in detail.
Also discussed were the potential risks and side effects of treatment.
Specifically emphasized was the risk of radiation damage to the normal tissue
structures in the treatment field including the skin, underlying bone, throat,
brain and lung.
Logistics discussed. She agrees to treatment. She was advised
to call should she have any further questions or concerns.
Department of
Radiation Oncology
* L clavicle pain, tenderness, feels getting
more painful and swollen, protruding large. Has headaches on right lower
head/neck area. Neck pain – clicks and stiff. Dr prescribed Norco today since Tylenol
does not help much.

==============================

Am I really writing about my Life? How can this be? I think back over the 10.7 years of treatment and realize how “lucky” I was in the beginning with not having to deal with Bone Involvement with this stikn Myeloma. I was so Naive and Optimistic, and just didn’t think this awful cancer would attack ME as it has. But ha ha on me, it did, always was getting worse, and now I cannot ignore or laugh off it’s impact on my life. 
I’m still waiting for my IGA results from Thursday. I really don’t have an intuition as to how Bad or Good my status is. I’m just so worried about what treatment to do, as I hate side effects, and there are some I just won’t tolerate. Not sure come Monday, if I will be doing Elotuzumab/Empliciti, or try Velcade again, with the Revlimid and Dex steroids. Can you even comprehend how medications are the “only” thing keeping me alive. And without an effective treatment… yikes… won’t go there now… 
Here’s a look back on my 10 year July 2010 Stem Cell Transplant:
So Crazy how I’ve been writing my Myeloma Life story for this long. And that’s only the July posts! I’m glad I have been loyal to writing, as it’s so helpful to look back on my status, treatments, feelings, life stories, and this will be the “book of life” everyone tells me to write. 
Ok, my Farrier is here to trim the horse hoofs, it’s a million degrees of heat out, and gotta go get all doggies corralled. I will post my IGA when it comes in, and next post will be all about the Radiation plan and hoping to get this pain under control and the muscles and nerves calmed down, so I can live my life! 
Thank you for reading and caring as you do! Stay well, healthy and pain free, as truly “Health is Everything”!!! 

Categories Uncategorized

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
==================
*****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 :)) 

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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

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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. 
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Just Too Much Going On

5.30.20

Hello Friends….

Not the post I was going to post…
Just too much going on in my little world and the big world…

So in short, I had a really rough week from this week’s chemo. Since I am on so many meds, I can never tell which is causing what.

Early on treatment mornings, I take Dex steroid pills (7 x 4mg = 28mg) before I leave for the chemo lab. Then at the chemo lab, I’m dosed up with more IV steroids @8mg for a total of 36mg. Interesting amount. For years I have done 40mg as 10 pills.

Next they give me 2 Tylenol pills, @ 650mg,
Pepcid @ 20mg via IV,
A slow drip bag of Sodium Chloride hydration drips through out the infusion,
And thennnnnn…. a lovely IV push of 50mg of Benadryl.
Yummmyyyyy!!!!!

Many would not “enjoy” this medication ride as I do, but honestly, with everything I am going thru at home with my Alzheimer’s hubby, sad to say… this is like a “spa escape” for me. The steroids quiet all the bone pain, headaches, and random body aches and pains, and gives me an amazing energy boost. Honestly, I just feel good all over. Sometimes a little buzzed, but all depends on how low my CBC levels are. Then when the Benadryl hits, I get all woozy and cruisy. You know that calm, serene feeling floating on a boat. Ah, just so lovely! How do you spell RELAX! Yep, it’s just so warm and fuzzy and woozy without the boozy, lol. I know many would not agree with me, and absolutely do not like this feeling, but since I never did drugs or booze, I enjoy this medical relaxation. Groovy woozy :))

All these meds circulate and do their thing for about 40, 45 minutes, before they start the Elotuzumab-Emplicity IV. There are various drip speeds and time protocols, but I always ask my nurses to slo-mo everything, so I don’t have a strong reaction. Plus, and you’ll laugh at this, I just want to spend as much time relaxing there as I possibly can. How funny and how sad is that!

I only have a slight stuffy throat reaction to the Elotuz, but really nothing at all during the infusion. I then take Revlimid pills nightly for 21 days.

But then………. like clockwork.. about 36 hours later, all the “good” side effects begin wearing off, and rather quickly, the YUCKY begins… and it’s all down hill from there for a few days. This week because of the Memorial Day Holiday, my infusion was on Tuesday, so late on Wed the Yuck began and really revved up on Thursday and into Friday. I was extremely weak, fatigued, had lovely diarrhea off and on late Wed, into all day Thurs, and into Fri. Ugh… so exhausting. I was so fatigued and tired, I actually almost fell asleep on the pottie several times.

So way back in the day, when I was on Revlimid, I had crazy unpredictable diarrhea, well actually it became predictable. I have some pretty funny blog posts about it, mostly during 2013, 2014, 2015. So here we go again with that, and the fatigue. Oh the awful, exhausting fatigue from daily Revlimid.

And I am just trying to do so much, too much, each day, just maintaining our household, ranch, plants, animals, people, laundry, bills, cleaning, fixing, repairing, insurance, ordering supplies, being organizer, supervisor, navigator and “boss lady” to everyone and everything. Thursday, I just had to give up, and give in, as I could barely stay awake. And I was so dizzy too. I’m not a napper, but I eventually just collapsed on the couch.

This coming week I’m supposed to do the MRI “without and with” the scary Gadolinium contrast. Will I do it? Not sure. Am I worried about how myeloma is raging inside of me, Yes. Do I feel “weird things” in my head and body where the tumors, masses, lesions are… Yes. Do I want to Really Know What’s Going On? Hmmmm, not sure. And I always wanted to know it all, always wanted to know all the details… but now… maybe “ignorance is bliss” in this case. Just too much on my plate right now. Wasn’t supposed to be like this. We weren’t both supposed to be so sick, and at the same time. Just such a tragedy. So much is a tragedy in this life. Didn’t used to be so challenging. Why, body, why did you, are you sabotaging me so much. Sabotaging our lives. Lives we worked so hard for, so carefully. 10 and a half years is a long time to be battling cancer, ingesting chemo non stop. I’m amazed I’m as “well” as I am for all I’ve been through. Grateful yes. Exhausted yes. Answers coming up next blog that I probably don’t want to hear, or deal with…

Thank you for reading and caring, and I hope your life is simpler, happier, and less challenging. But in the Big Picture of Things… in the Big Giant Picture of Things… I’m ok…

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Hello Elotuzumab and My Ol Friend Revlimid

5.20.20
Hello Friends-

So much to share, and of course today is Crash Day from Monday’s New Treatment Regimen, so I’m feeling new and different side effects, ugh… Also just as I was beginning this post, I received new (shocking) lab results from Monday’s pre-infusion blood draw. Didn’t know they were running my IGA, Beta2, along with the basic CBCs, etc, prior to my new treatment infusion, but glad they did as a baseline…  Thank you for checking in and caring as you do!

Ok, here we go with the new treatment story:

Hello my new Myeloma killer- Elotuzumab!

Hello new Infusion friend to pummel Myeloma

Hello again, my ol friend Revlimid who originally saved my life
after my December 30, 2009 IGA Lambda Myeloma diagnosis.
Was on Revlimid 2010 before my July 2010 SCT,
Then low dose maintenance 2011, 2012
Took a break summer 2012 to summer 2013,
Then back on 2013, 2014, early 2015
Until I became “Refractory” to it, and switched
to Kyprolis…

So basically my Myeloma is trying to rage again. I am such an “under reactor” and naive optimist, and always think things will just magically be ok, or that my myeloma diagnosis was a mistake. Until I get slapped in the face with reality in the form of lab results. Well I’ve received several wake up calls in the last week, along with side effects that just won’t go away. All these I have been denying away for quite some time now. 
I had a CT scan back in January, and it was noted that I have a new “mass” in my Right side skull. It measures 36 x 37mm. I think I even posted about it then, but with my husband’s complicated Alzheimer’s situation, and then the rise of Corona Covid, I ignored my news and hoped it was all wrong, or again, would just magically resolve itself. Well, as my headaches came and went with varying degrees of intensity, I just couldn’t deny something was up in my head. I had intense headaches back in late 2019, early 2020, but associated it with the crazy “head colds” I had on and off in Dec, Jan, Feb. I even had a CD disc of the CT, but I can’t make heads or tails of the data, and it all looks like outer space meteors and aliens to me. It wasn’t until I met with my Dr last Thursday, and she was able to locate the written report and print it out for me, that the reality of this monster growing in my skull, hit me. And it’s continued to hit more and more each day, along with the increase in IGA, Beta2 and M Protein levels. I can’t deny my status anymore, and I can’t just “hope” it will all be better, and disappear… Here are my realities and wake up calls: 
Wow, a 500 point jump in just 10 days!

Up up up…

So Monday was the first of my new treatment triplet of Elotuzumab/Emplicity, 28mg of Dex steroid pills at home, along with another boost of 8mg of Dex steroids via IV with the Elotuz infusion, along with 50mg of Benadryl, along with 2 pills of Tylenol, I think a total of 500mg, and some Pepcid. Then I take the 10mg Revlimid pills daily (at night) for 21 days, just like years ago. Basically all went ok with the first infusion. I did have a slight stuffy throat reaction very briefly, but we slowed the flow of the infusion, and all was ok. As I have posted before, I love the up up up buzz I get from the Dex steroids, along with the relaxing sleepiness of 50mg of IV Benadryl, along with the time I am at the chemo lab “just relaxing”, no one needing me,… so treatment days for me, are actually rather pleasant lol. But I know the crash is coming, so I do mentally prepare for that. Late Tues, into Wed is a struggle, but by mid Thursday, I begin to feel a lot better. I’m very fortunate I respond well to steroids, and don’t have the horrible reaction many do. Well, some weeks I do. Some weeks it’s harder on my stomach than others. I have associated that the lower my WBC, the less dramatic UP I have. 
Here we go
back to IV infusions
Lucky me, room with a lovely view
Anyway, I have scheduled the recommended MRI for early June, to further look at the monster growing in my head. I am still uncomfortable with the Gadolinium contrast used for the scan, but I guess I will just have to take my chances, and hope I don’t have some crazy allergic or kidney reaction. 
Please let me know if any of you reading this have had a negative experience with the Gadolinium contrast dye with a MRI… Ugh, I just don’t want to deal with another challenge… 
I’m just so sad Myeloma has consumed the last ten and a half years of my life, and the reality is, will consume the rest of my life, just trying to stay alive and deal with all the side effects and body deterioration. A mass in my skull, head is kinda scary. I’ve been allowing myself to think more about this reality. Radiation to the head, brain is a bit scary… Don’t want to lose any more brains than I already have…
Hoping this crazy life isn’t too crazy for you, during these crazy crazy times! Thank you for checking in and caring about my story as you do. I appreciate all your comments, and you sharing your story here with me and everyone else.

Jack and Nala
2 of our “support staff” :))

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What Happened to my Life

5.10.20

Hello May

(I’m, writing this several days before posting, so not sure I will even post these thoughts…
Ok I will, as no-filter is my middle name :)

I shouldn’t whine and complain, but I’m just so sad…
I have so much to be grateful for, on so many levels, compared to so many, especially in these crazy Pandemic times, but I lost my life and future dreams long before CoronaVirus changed the world.

I look outside my window and see such beauty 

Beauty Jim and I created over 38 amazing years
Beauty we were supposed to enjoy, not be challenged by
I look outside and see our past, our current, and wonder our future
I see Blue skies, green trees, green lawn, happy plants and colorful flowers
His roses, so loved and cared for, now “my” roses needing “my” care
So much upkeep to keep everything beautiful, alive, thriving, clean

I look outside and see my horses hanging out in the sun, swishing flies
I see my horses there, just there, and I remember the life we used to have
I see my horses out there, and remember the times I could “just go out there”, just ride, just hang out with them, hang with the kids and adult friends, minus medical challenges
I look outside and see decades of TLC invested in our ranch
I look outside and see how much there is to appreciate and enjoy
I look outside and realize how much I cannot do any more
I look outside and realize how limited I am
I am just so depleted, so exhausted mentally and physically
I realize how much Myeloma has limited my life
Limited my ability to do and enjoy as I used to, as I always envisioned I could and would

I look outside and know I must continue on for the humans and animals that count on me, rely on me for Everything…
I know how much Myeloma (and Alzheimer’s) has changed me now
I’m not the girl that started writing this blog in 2010

Physically, my head hurts
The base of my neck hurts
Headaches are non stop
When I sleep, I feel like my head is made of cement, and I am sleeping on bricks
I dislike taking pain meds as I’ve always tried to work thru pain and I worry about the additional impact on my vital organs
But I’ve had to take Tylenol, Advil several times a day just to take the edge of the pain, just to do the minimum, of the maximum I want to do
Dex Steroids Save My Life! They relieve so much of all of this. Today I feel ok, finally, I don’t hurt so much. Dex Steroids Save My Life on so many levels.
Remember… Myeloma Hates Steroids!

But my immune system is always so low, stealing all my energy and dreams of doing and the things I want to do, and all the things I saved for “later”, for when I retired, and thought I would “own my own life” … ha! Such a stolen life in so many ways…

My treatment crashes last longer now, and I am spending more time in bathroom with surprise side effects. I hate GI side effects, I hate pain, I hate living wondering what will happen each day to me that Is Out of My Control. I used to be so healthy. This makes me so sad. I used to be so healthy. What Happened. Why did my body sabotage me? Why me? Why was my life stolen from me? Whine Whine Whine, Sad Sad Sad…. I seriously ask for so little, want so little, just want to enjoy nature and our home and our animals, and all the humans in our life. I just want to enjoy life pain free. Is that too much to ask. I’m tired. Tired of being tired. Sick of being sick. Done with Challenges… ok Julie, shut up and move forward. I know, I am very fortunate! Going on 11 years with Myeloma, and I am still functional on many levels…

So 5.10.20 was Mother’s Day, and I hope all my Momma friends and followers had a wonderful day celebrating YOU and all that you have done for others as a Mom. Yesterday was a bit sabotaged for me, as Jim’s brain functioned on a more active level yesterday morning, and at about 6:50am our house alarm started SCREEEEEECHING, abosolutely scaring the $#!% out of me. I jumped out of bed begrudgingly as I wasn’t sure what I would be finding in the family room, where Jim sleeps in a chair… that’s another long story I will tell if you’d like to hear…

Long story short, he had gotten up all by himself, walked to the door a few feet away WITHOUT his cane or walker, and opened the door a little bit, setting off the alarm. Most of me wasn’t happy, as I’m soooo very sleep deprived, part of me shocked at his mobility, a little bit of me was incredulous and happy for him. But the part of me that is sleep deprived, achy, tired, hurting, frustrated, etc, and a Cancer Patient that never really gets the “luxury” of “being a cancer patient”…  reacted in a not so “adult manner”. I let him out alone, and said sarcastically…. “ok, you woke me up early, scared the crap out of me, and here you are, with your brain telling you it’s time to get outside and feed the horses, just like you used to”…. “Great for you Jim, if only this was real…”but I’m not going out there at 7am!” “Gooo, just go if you want to, since your body is so ok today”, good for you”… Happy #%&#! Mother’s Day to me”! I sighed, cried, and started to video his precarious walk out to the horse corral. Not his fault, he can’t help his brain-body sabotage either. I hate Alzheimer’s more than I hate Myeloma…

Yes, bad me… but I’m sure y’all can understand my frustrated, overwhelmed, exhausted emotions.

So I filmed him as he slowly, actually somewhat solidly made it to the horse arena, where THANKFULLY our gardener (who I’d hired a few years ago to help with the early morning horse chores, was already out there with his helper), noticed Jim, and immediately went to him. I could tell how shocked he was! I knew he was looking for me or Jim’s caregiver, but we were no where to be seen or found LOL. Eventually Antonio came to the porch and got Jim’s walker, and Jim safely made it back to the house, thank you Tony! Me, still shocked, frustrated, happy, sad, a bit angry, so I had a meltdown with this in my face reality of all the challenges I must deal with daily, with my cancer situation, and Jim’s Alzheimer’s. Maybe I can upload a video from this insane brain event. No doubt, Jim keeps defying the Alzheimer’s odds. I’m happy and so sad for him…

I have a BIG DECISION oncology appointment Tues, May 12, so I will let you know my current Myeloma lab status and what decisions my Dr and I come to regarding changing up my chemo regimen next week. Did I mention that last week I only did the 40mg Dex steroids and 400mg Cytoxan Cyclophosphamide. And Monday (today), I only did 40 mg Dex steroids, as my Dr wanted me to “clear my system” for the new regimen of Elotuzumab Emplicity and Pomalyst…
Oh boyyyyy, here we go…. Ughhhhh

Ok, I will update you on my next post, 5.20.20
Lots going on, chemo changes May 18, MRI coming, head skull neck pain from myeloma lesions, tumor, mass…. oy!

Thank you for reading and caring and posting hellos :)) Stay well and strong on all levels. It’s a job, isn’t it :))

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Myeloma is Too Smart and Currently Winning :((

4.30.20

Hello Everyone-

Hoping all is good with all of you during this new new new normal we are all experiencing. The spectrum of affect is so different for everyone, depending where you live, what your living circumstances are, what your work, home and family and life is, what your medical situation is, etc. As I have written before, not a whole lot has changed for me, as I’ve lived quite the isolated immune compromised life for more years than most people could tolerate. Main change for me, is lack of availability of common household products I used to order easily online, and of course the worry of coming in contact of that sneaky stealth coronavirus.

I have a phone consult with my Dr today, and suspect she will again want to discuss changing up my chemos, as Myeloma is again outsmarting our triplet concoction of Dex steroids, Velcade and Cyclophosphamide. As I have mentioned a zillion times, my main concern with changing treatments is my fear of new side effects. I’m just so tired of 10+ years of not feeling well. Just so exhausted from weekly medication crashes. Just so beat up from being sick for so long. Yes, just sick of being sick. I feel so beat up right now, as I’ve been doing too much around around my house and yard with Jim’s situation, and I had a terrible GI crash late Tues, early Wed from Monday’s treatment. Was on the pottie til about 2am, finally showered around 2:30am. When Jim’s caregiver Chris came in the morning, I went back to bed until around 3pm Wed. Still feel so wiped out (no pun intended lol)

I’ll post screenshots of my labs after our phone appointment, but I did see my IGA and Beta2 Microglobulin the other day, and both are way above normal. IGA is over 1740, and Beta2 over 2. Normal for IGA is 70-400, so that puts me at over 4x the high end of normal… been there before, so I’m not in a panic about it, just sad this treatment is now becoming ineffective, but to be expected by now. I’m still very appreciative that it lasted as long as it has, since Sept 2018!

5.1.20 UPDATE

Ok, here are my most recent Lab results:

IGA
Up up and away…
M Protein up up up
Beta2 Microglobulin
Up up up

Sooooooooooo…. after seeing these results…
You can imagine how the conversation with my Dr went with my increasing lab stats. She is very vigilant, and not wanting to let my levels escalate any further…  Me, I would wait to see if they would magically come down next cycle, or wait until my IGA is over 2000. Stupid, yes. Scared, yes. Not wanting this news, yes. We discussed the reality of my situation with the myeloma increasing, the length of time I have had myeloma, the amount and types of chemo and immunotherapy treatments I have already been through for over 10+ years, and what remaining treatment options are available to me. Yes, I must move forward and accept that my current triplet treatment is no long effective.

I’m still processing everything, but my situation really hit me yesterday, and I had a mini meltdown but eventually pulled myself together as I always do. I’m still very sad today. Guess I still live in a hopeful, too optimistic, dream world, that my Myeloma will magically be in control, and I can go forward with my life, and pretend I am ok. I still hope each morning I will wake up, and Jim will be his ol self again, and I will be ok, and we can can back to our pre-illness life. I really don’t want much, I just want to feel good and have functionality. Yes in the BIG PICTURE OF THE WORLD RIGHT NOW, I am very very fortunate, and I know it. I just miss my old life, and I miss all the potential things I had planned on doing in this chapter of my life, had I been well, had we both been well… oh well… forward march Julie…

So THE PLAN…
I accepted my fate reluctantly, while pleading and negotiating no drastic medication changes. Ha Ha! I never want to NOT be on myeloma pummeling meds, no matter what. I know my Myeloma, and know how aggressive it is, and know that left UNtreated…. it escalates FAST! Even in the end… I will do Dex steroids to feel ok. So my Dr recommended we stop my current triplet of Dex steroids, Velcade and Cytoxan and MOVE TO Elotuzumab Empliciti https://www.empliciti.com/ with Pomalyst https://pomalysthcp.com/triplets  and Dex.

She told me a “transition period” is needed to clear the current meds out of my system, which makes sense, and to just take the Dex steroids for the next 2 weeks. But that scares me. Just Dex… there you go myeloma. Free ride to take over… We would then have an in-person appointment, second week of May. I again mentioned how my numbers have rollercoasted over the last 10 years and I wasn’t too too worried about the levels now, and could we just go another month, and see what happens, blah blah, me thinking one month will do something magical, blah blah, ha ha…  Nope, she’s worried about the upward trend, and doesn’t want to wait to see what might happen, and actually, no point in waiting, the trend speaks for itself… Ah, yes… my numbers speak for themselves… Ok, ok, here we go… cccchhhhange…

So we will drop the Velcade starting now. My last dose was this past Monday, and I’m pretty proud I tolerated it to shot #80! Yes, 80 shots of Velcade. 80 weeks of Velcade! Go me. I have had a bit more Neuropathy in my feet lately, so perhaps this is the best decision.

The New Plan:
I will do Dex and Cytoxan (Cyclophosphamide) on Monday May 4th, without the Velcade. This will be my last dose of the 400mg Cytoxan pills. Then the following Monday, May 11th, I will just do the 40mg Dex steroids. Then Tues May 12th, I will meet with my Dr to discuss the new plan of Elotuzumab and Pomalyst, to begin on Monday May 18th.

Not happy myeloma is once again winning, but grateful I have options.
Scared of new side effects, but sadly used to it.
Tired of the whole thing, yes, but I won’t give up yet!

Beautiful sunset view from my backyard the other day :))
Yes, I am still very very fortunate…
Jim’s roses are so beautiful this year!

Thank you for reading and caring about my crazy myeloma story. Stay well, stay away from all the cooties and I hope your life is less complex than mine!

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