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...

What does 512 mean on a pill? Acetaminophen-Oxycodone Hydrochlorideslide  Acetaminophen-Oxycodone Hydrochloride, 325 mg-5 mg, round, white, imprinted with 512"  = PERCOCET

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.