Cowgirl Up!!! ... Does Horse Poop Cause Cancer??

Thursday, July 30, 2020

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 bone scan realities of my crumbling bones, spine, neck, clivus, skull has really challenged my strength... brought some new fears too. If my "neck crumbles or breaks"... being a "paraplegic" is not an option for me...

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. We take our physical freedoms so much for granted, until something jolts us into another reality.

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... So many challenges in my life were "temporary". I could always see options and choices. Myeloma and fighting cancer is so different. We are no longer fully in control of ourselves, our lives, our bodies, and most scary... life extending, life saving treatment options. If there aren't treatment options... well... myeloma wins. Just so huge to think how I so little "own my own life" now.

Here's my recent Radiation adventure pictures. I'm too limited to drive myself to treatments, as I did back in 2018. The tangled nerves and muscles within the tumors is limiting my movements and flexibility like none other. I am very fortunate to have family and friends available to drive me and help care for me. Such a twist, as I was always everyone's caregiver...

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!!!

My Thurs and Fri amazing limo driver Kristin!
Couldn't do this without all my amazing
caregivers and "support staff" :))

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!





Monday, July 20, 2020

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. 











Friday, July 10, 2020

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"!!! 







Tuesday, June 30, 2020

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 :)) 





Saturday, June 20, 2020

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



Thursday, June 11, 2020

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. 



My Story... How my MM was diagnosed

October/November/December 2009...

Most of my life I was VERY presumptuous about being healthy, taking my (mostly) GOOD health for granted...
I was committed to annual check-ups for all of us, and so late October 2009, my daughter and I went for our annual and very routine physicals.

Surprise, surprise... my routine blood tests revealed extreme Anemia, significant White and Red Cell issues, low Platelets, and a variety of other CBC red flags! I was (stupidly) not worried when my GP doc left repeated phone messages to contact him, and when we did speak, I (stupidly) requested postponement of his referral appointment to the Hematology Dept until the end of the Fall academic term.

Arriving for my first appointment Dec 14, 2009, I was confronted with the check-in sign that read: "Hematology/Oncology"... What? Nooooo! not me... I must be in the WRONG place! And so my diagnosis journey began with vials and vials of blood drawn "stat", urgent Dr consultations, a surprise and painful Bone Marrow Biopsy, a full body Skeletal Scan, more blood tests stat, and then on 12.30.2009... THE revealing meeting... the "huh-what" moment ... the confirmation diagnosis that I, Julie, have CANCER!!!

Happy New Year to me, I just learned a new vocabulary word:
Multiple Myeloma!!! MM, Multiple Mye-what-loma!!!

January - June 2010

My medical metamorphosis began.
I read, and read, and read and researched and researched MM. I trusted my expert Oncology/Hematology team's plan and began my "New Normal" as a cancer patient.
My treatment plan was developed to include powerful Dexemthesone steroids paired with Revlimid chemotherapy, with the plan to be hospitalized for an Autologous Stem Cell Transplant July 2010.

I began living "one day at a time" like never before.
Jim was a wreck. Alissa and Scott were stunned; family and friends shocked.

Me... Cowgirl Up! I got back in the saddle and knew I was in for the ride of my life!
I did well on my initial pill-form Revlimid Chemo, "roid-rage" Dex Steroids and other supportive meds. I am forever deeply grateful and appreciative for all the love and support from everyone in my personal and professional life! I thank all of you for working along with me, and allowing me to continue to lead a semi "normal" life!
YOU have helped save my life!

My treatment trail ride forks to City of Hope hospital as I will saddle up beginning June 9, 2010 for a new rodeo called an Autologous Stem Cell Transplant!
Ye-Ha, let the adventure begin!

Chemical Warfare...

January 2010 - May 2010:
My initial chemo regimen:

Pill form Chemo= Revlimid (10mg, 15mg capsules)
Pill form Dexamethasone Steroids (40 mg, 4 days on, 4 days off!
Omeprazole for steroid acid reflux
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12
.81 Aspirin to prevent DVT, Revlimid complications
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral

June 2010:
High dose IV Cytoxan chemo
Neupogen to build up stem cells for Apheresis, stem cell harvest, which was very successful, as City of Hope was able to collect 9.5 million of my own stem cells

July 2010 Hospitalization:
Two days of high dose Melphalan chemo
Then July 5, 2010 = my Autologous Stem Cell transplant infusion!

And you can read my whole story from that point forward in this blog!


What is multiple myeloma?

What is multiple myeloma?

Cancer starts when cells in the body begin to grow out of control. Cells in nearly any part of the body can become cancer, and can spread to other areas of the body. To learn more about how cancers start and spread, see What Is Cancer?

Multiple myeloma is a cancer formed by malignant plasma cells. Normal plasma cells are found in the bone marrow and are an important part of the immune system.

The immune system is made up of several types of cells that work together to fight infections and other diseases. Lymphocytes (lymph cells) are the main cell type of the immune system. The major types of lymphocytes are T cells and B cells.

When B cells respond to an infection, they mature and change into plasma cells. Plasma cells make the antibodies (also called immunoglobulins) that help the body attack and kill germs. Lymphocytes are in many areas of the body, such as lymph nodes, the bone marrow, the intestines, and the bloodstream. Plasma cells, however, are mainly found in the bone marrow. Bone marrow is the soft tissue inside some hollow bones. In addition to plasma cells, normal bone marrow has cells that make the different normal blood cells.

When plasma cells become cancerous and grow out of control, they can produce a tumor called a plasmacytoma. These tumors generally develop in a bone, but they are also rarely found in other tissues. If someone has only a single plasma cell tumor, the disease is called an isolated (or solitary) plasmacytoma. If someone has more than one plasmacytoma, they have multiple myeloma.

Multiple myeloma is characterized by several features, including:

Low blood counts

In multiple myeloma, the overgrowth of plasma cells in the bone marrow can crowd out normal blood-forming cells, leading to low blood counts. This can cause anemia – a shortage of red blood cells. People with anemia become pale, weak, and fatigued. Multiple myeloma can also cause the level of platelets in the blood to become low (called thrombocytopenia). This can lead to increased bleeding and bruising. Another condition that can develop is leukopenia – a shortage of normal white blood cells. This can lead to problems fighting infections.

Bone and calcium problems

Myeloma cells also interfere with cells that help keep the bones strong. Bones are constantly being remade to keep them strong. Two major kinds of bone cells normally work together to keep bones healthy and strong. The cells that lay down new bone are called osteoblasts. The cells that break down old bone are called osteoclasts. Myeloma cells make a substance that tells the osteoclasts to speed up dissolving the bone. Since the osteoblasts do not get a signal to put down new bone, old bone is broken down without new bone to replace it. This makes the bones weak and they break easily. Fractured bones are a major problem in people with myeloma. This increase in bone break-down can also raise calcium levels in the blood. (Problems caused by high calcium levels are discussed in the section “How is multiple myeloma diagnosed?”)

Infections

Abnormal plasma cells do not protect the body from infections. As mentioned before, normal plasma cells produce antibodies that attack germs. For example, if you developed pneumonia, normal plasma cells would produce antibodies aimed at the specific bacteria that were causing the illness. These antibodies help the body attack and kill the bacteria. In multiple myeloma, the myeloma cells crowd out the normal plasma cells, so that antibodies to fight the infection can’t be made. The antibody made by the myeloma cells does not help fight infections. That’s because the myeloma cells are just many copies of the same plasma cell – all making copies of the same exact (or monoclonal) antibody.

Kidney problems

The antibody made by myeloma cells can harm the kidneys. This can lead to kidney damage and even kidney failure.