It IS a Happy Thanksgiving Today... for Me :))

11.26.20

Hello Friends,

Wishing you and your families a wonderful Thanksgiving Holiday, under the crazy Corona Covid circumstances. Hoping your day of family celebration, thankfulness, and gratefulness, brings you blessings and positivity.

With all the DRAMA I have experienced lately, I just couldn't wait for 11.30.20 to show you this amazing Myeloma marker that just came in this morning! Beta2Microglobulin has always been a telling cancer status marker for me, and this result has just given me so much hope that "my idea" of going back retro to Jan-May 2010 Super Duper High Dose Dexamethasone Steroids of 40mg daily x 4days per week.... IS WORKING! I've only been doing this since the beginning of the month (November), and can't wait to see how this progresses this way forward, rather than all the scary multiple at a time chemo options suggested to me! 

Seriously! Whoohoo!

That's a Significant

DECREASE, right! :))))

Thank you Beta2 for responding!

I'm encouraged my tell-tale, main Myeloma status marker- the IGA Immonoglobulin  level will also be reduced, based on the Beta2 result, but I am really holding my breath... Myeloma is such a tricky, smart, and constantly mutating and morphing cancer, that there are no "guarantees" that the IGA will follow in Beta2's direction... and who know's how the M Protein is reacting also...

But I will post the IGA result, when it comes in, regardless of the direction of the result... 

* * Whooo-hooo, result is in.... See Below!

My Dr called me Wednesday (before I did labs, so she hadn't seen this result yet)...  very worried about my recent 11.20.20 Biopsy report of my Abdominal Mass status (along with all my other Masses), and my myeloma status numbers, and she mentioned again doing the intense 24 7 daily hospitalized chemo regimen of multiple chemos at a time...  In my mind I said Hellllllllllooooo to the Frkn Nooooooooo!!! We will talk on Tues Dec 1, and she will have all my labs to back up my desire to continue with Super Duper High Dose Dex Steroids, Kyprolis and maybe add one more chemo! Wish me luck that my IGA is on a long term downward path, along with my M Protein...

Annnddddd.... here's the IGA result :))

I'm not a math star, but isn't that a 

900 point differenence from last month!!!

900 points DOWN!

Thank you for reading, commenting and caring as you do! Have a wonderful family holiday! Stay away from all the Fall and Winter cooties, and if you're one of my Myeloma buddies, I hope your treatment is pummeling those sneaky cells trying to do us in!

And I'll post again on Dec 1 after my Dr appt :)) 

Masses, Biopsies, Scans, Lots of Dex Steroids, Lots!

 11.20.20

Hello Friends, 

Well today was "Abdominal" Liver-Kidney Mass Biopsy Day! Seems like I am chasing so many turmors, masses, fractures, high IGA and M Protein stats, low CBCs, and crazy Myeloma symptoms all the time. I'm forever trying to wrap my overly full head around how this insideous cancer just keeps morphing and evolving inside of me. So wish I could see what all this looks likes inside of me. I do see my scans, read my reports, and the Drs show me pictures of my lovely damage, but of course I don't have a "trained" medical eye, so it all looks like outerspace and alien beings to me :)) 

Preceding the biopsy today, was continuing our "old school trial" of 40mg Dex steroids daily- M, T, W, Th, along with Kyprolis chemo on Mon and Tues weekly. Dex has given me new energy for 4 days, but stolen my sleep of course. After all this time on Dex, I am so used to it's roller coaster, bipolar effects. I never know what each day's reaction will be. I do eventually crash of course, sometimes more yucky than other times, and eventually I do get some solid sleep at night. I've never been a day napper, as I've always been on the go, but who knows, I might eventually accept my age and diaganois, and learn how to just "relax and snooze" whenever I want lol.  Sadly, as a result of all this, FATIGUE seems to be one of my worst enemies now. FATIGUE is real, debilitating, limiting and frustrating, and different than just "being tired". Fatigue just totally drags you down, and you just don't think you can move, or do anything. It's so exhausting, and it makes me dizzy too... just wish I could get my energy back, even to a small degree, to just be "me",, well an older more damaged version of me, but me, back, would be nice.

Here I am in "recovery"

after the biopsy procedure today

Yep, this is my life. Accept it Julie. Myeloma is you, and you are Myeloma. It's going to advance, change, morph and evolve all the time. But naive me, throughout the years, I really never expected it to do all the "typical cancer things" it has. I was just so darn fortunate in the beginning to have such success with treatments, and what we thought, was minimal internal and bone damage. But then, things changed. Why? Who knows? When? Who knows. But boy oh boy did things change, and how it's revved up, is just insane. I've become so accustomed to "bad news", crazy lab and scan results. I'm surprised, yet not. I expect "good news", but when I get "bad news", I shake my head, accept, as of course, what did I think would happen if I survived as long as I have. 

Since the summer, this is what's been "treated":

1- Head-Skull-Sinus mass, R side- Radiated in July

2- Clivas/neck, Clavical/collarbones (both sides), Rib fractures (R side)- Radiated in July

3- Lung mass, R side- Radiated earlier this month (Nov)

4- Now we're dealing with this "big" Abdominal mass- (turns out, thankfully, NOT directly in the liver or kidney

5- I probably left some areas out... will update as I remember lol

Three masses. Masses. I have masses. Just can't get over it. And they're not little peas either. I previously posted the scan reports, and that has all the details and dimensions there. I'll have to go back and re read it, as now that I've been actually physically dealing with these aliens within me, I can connect with it more lol. I've also dealt with the clavicle and rib fractures on both sides, other tumors (L side clavicle, lower spine-sacrum), neck/clivus being eaten up by myeloma, etc. So much happened this summer. So many monsters inside of me rearing their nasty personalities all at once. Amazing what this lil body can handle... 

So here's what happened yesterday for my biopsy:

For whatever reason, I was scared in a way I am not usually "scared". Maybe because with the stupid covid corona virus pandemic panic, most all medical treatment is ALONE now. Jim and I did most everything (medically) together. I went to all his appts, and he to mine. We made little adventures and "dates" out of it, most always going to a fun lunch or dinner afterwards. Even though I am "mid life" I still feel like a kid in so many ways. Not immature, just young. So going to all these procedures of recent without Jim or my adult kids (literally being there with me), just makes realize how my body and I am in this together (alone), and I can't "rely on anyone else to "help" me. Of course my amazing adult kids, friends, family, etc, are always offering to help me, take me to appts, go with me to treatments, etc, but in this pandemic life, there's really no point, as no one is allowed in appts, procedures, etc, unless I was "disabled" and actually needed a physical caregiver to assist me. 

My son and his fiance drove me down, but of course could not stay, as the procedure and recovery was most of the day. I feel all their love and care, but I also felt "alone". Not lonely, and not "alone" in a bad way, just the reality of "aloneness". Well I was greeted by the loveliest lady, who happened to be the Nurse that called me the day before to answer all my questions. I felt an immediate feeling of relief and comfort. I had brought Jim's picture with me in my little bag, and showed her. Briefly told her my recent insane life story. She teared up a bit and gave me a hug, even though we should not have per the virus lol. Kaiser just takes such amazing care of me. I am so fortunate to have this Insurance and access to the facilities and incredible professional staff I do. 

I was set up in a hospital type area, although this was just an outpatient day procedure. I wasn't scared or nervous any more. IV was run, heart monitor, blood pressure cuff, oxygen monitoring, etc., all the typical body stat monitors. Soon I was moved to the procedure room, which had an open CT scan and other machines. The Dr of the day and more Nurses attended to me, and let me know what was going to be happening, step by step. Me of course, "chatty counselor", and still feeling the affects of the week's Dex, asked a lot of questions, etc. The staff was great, and described everything to me, etc. The surprising twist, was that this mass was actually "Abdominal", and fortunately NOT directly inflitrated into my Kidney or Liver, but kinda floating around in my back R side Abdomen area, kinda above or a little attached to the Adrenal glad. This was "good news". 

I had to lay on my stomach, which I haven't had the "luxury" of doing for quite some time, with all my bone damage, rib, clavical fractures, and bone damage/pain in general. But I was able to maneuver myself with their help and did ok. They scanned me again, prepped me, and used an Ultrasound machine to locate this stikn mass for the needle biopsy. I had mentioned  to them, that I'm "not Brave" anymore, and did not want to feel pain, thinking of course, of all the awful Bone Marrow Biopsies I've had over the years. They used Lidocaine for the pain block of the needle going in, but I actually didn't need anything else. That had a weird feeling at first of course, and they had given me advance warning of the feeling, but all was ok. I am braver than I think or want to be, and I do have a high pain tolerance. Just don't want to anymore lol. 

So long story short (are my long stories ever short lol), it turns out this Mass was a bit different and evolved than orginally seen on the previous scan. The Dr was great, narrating and talking me thru the whole procedure. He asked the techs for additional size needles for additional biopsy samples. I heard him use the word "Necrosis", "Necrotic" several times. He also mentioned to the staff, that he wasn't getting the samples he wanted. He indicated he usually only takes a few, but in my case, took 10-12. And he kept commenting on the how the nature of the mass had "changed". He seemed to be indicating something positive... 

Later when he visited me in Recovery, he gave me additional details. I told him I wouldn't "hold" him to anything he was "guestimating", as of course we had to wait for the detailed biopsy report, but he seemed to feel positivity towards the "Necrotic, Necrosis" status of the samples. We talked about my HIGH dose Dex steroid regimen, and being on Kyprolis, and he was optimistic that "maybe" it was "doing some good" and actually "killing" the cancer cells!

A bit later, an xray tech came in with a mobile machine and took a bedside chest xray, as they wanted to make sure the needles did not puncture or penatrate my lungs. So much Anatomy and Physiology to know! During the procedure, the Dr was very careful to direct my breathing as he did the needle sampling. He mentioned something about my lung moving around in that area, and needing to be very cautious. So much I don't know! I was monitored for several hours, and actually felt ok. It was very quiet in the Recovery area, and not many patients. I felt very safe there. Today I am bit sore in the biopsy area, and my neck too, but nothing bad at all!

Did I mention, this Mass is "huge". I asked if it was tennis ball size, he said perhaps "softball" size! Wow!

So my "take away" from this is hopeful. Hoping High Dose Dex Steroids and Kyprolis is doing some killing inside of me! I continue to be awed by how much I have experienced, continue to go thru and experience. I am forever and ever grateful and appreciative for all the amazing humans in my life that are working to heal me and facilitate a longer life for me. Kaiser staff is always amazed at my (now) 11 year Myeloma survival. I am awed and indebted to all the medical professionals that have worked so hard to keep me alive! 

Forgot to mention 

that one of the stipulations of the Biopsy procedure

was a Covid test. 

Did it a few days before, and of course Negative.

I told the Nurse of my Skull, Sinus mass, and to please be VERY careful

with the probe, and he said he wouldn't even go up high,

but just swab my nose cavity a lot. 

Such amazing care by these wonderful medical professionals!

So much more detail to add all the time, but I'll leave it here, and let you know the results of the Biopsy when I know. I'm exhausted, but feeling ok. My point of pain reference will always be this summer's madness, and I am so very very grateful that all that horrific pain has mostly dissipated, I am feeling better overall, more hopeful, and thinking my current treatment might actually be telling Myeloma off. 

Thank you for checking in, caring, offering your advice and heart felt comments. If you are a Myeloma warrior, please always let me know your status, treatments, and how you are doing. I appreciate all of you as my virtual friends and support network. Fight on! We can do this! 

Challenges Challenges, Radiation Radiation, Chemo Chemo, Pain, Limitations... Hate you Myeloma!

 11.10.20

Hello Friends, 

So much going on, and I will try to make this short LOL, as my details are so detailed, and you're probably tired of hearing of all my pain and suffering commentary...

My whole life is Myeloma, chemo lab treatments, radiation treatments, side effects, side effects, side effects, home pain treatments, me treating my symptoms 24 7, not feeling well all day long, most all days feeling "sick" all the time, trying not injure myself more than I already am, forcing myself to eat and drink, living in the bathroom with lovely diarrhea many times during the day, then "tortured" when looking out my windows, feeling so sad the life Jim and I created, I am missing out on, that I should Not be missing out on... And the FATIGUE, omg, the FATIGUE... takes my breath away...

We all know the quotes and memes about us not being our cancer diagnosis, cancer not being us, not letting it be our identity, not letting cancer take over our lives, etc. Yes, for many, this all may be true and possible, but it's not for me and most myeloma patients. In my beginning, no one really understood the INCURRABLE, TERMINAL diagnosis status of myeloma, even though I explained it all the time, and wrote about it all the time. I was also "judged" on how I "looked so good", and how I continued to try and work a few hours a week, and on my good days, tried to engage in life. Early on myeloma was eating me up from the inside out, and we really didn't know the extent of it, even though I did have scans, xrays, skeletal scans, etc., and I did have "weird physical, body feelings" I tried to suppress and ignore. I did Not have continual pain, only intermitant, so I didn't have the "typical" myeloma red flags. I was very careful with what I did, took few physical chances, always very clean and sanitary waaaaaay before Corona Covid, so I didn't have a lot of dramatic Dr appts, etc... Myeloma was very silently eating me up, and I just didn't know it...

But over the years, pain began to dominate my non-steroid days. Any little cough, sneeze, bend, fall, lifting, awkward position of leaning over, etc, tweeked something terribly. At first I just got mad at myeself for doing too much, and for still trying to live my pre-myeloma life. Then I realized, accepted how my body was weakening, and sabotaging me more each day. I never could, and still can't, really differentiate or tell the difference between muscle, nerve, bone pain. But it was Zometa (2018) and Elotuzumab (2020) that for whatever reason, super stimulated the horrific pain, crazy side effects and severe bone damage, tumors, masses, etc. (I've mentioned this so many times, so I won't go on and here about it again). But the extent of RAPID tumor and mass growth, sudden fractures, etc, has really brought the reality of this cruel disease to the forefront of my life. Myeloma is me, and I am Myeloma. I can't pretend I am ok, and live a pretend, "normal" life... I can't be the positivity memes that I am Not Cancer, and Cancer is Not me... we are One, and I cannot deny it. Ouch, just did a little cough, and I probably cracked another rib! Oh well, more Radiation tomorrow and the rest of the week.

But I just don't understand how myeloma can bring me down so fast now. I was so treatment responsive, and rather "healthy" with successful treatments, even as recent as earlier this year. Being the deep thinker I am, I'm always incredulous of my situation. How could this once super strong gal, be so incredibly sick now. How could my biochemistry sabotage me as it did, does! Since I didn't have a lot of  the typical alarming bone breaks and bone pain, and I still had a "functional" life a few days a week, how could I be so sick on the inside! I was so fortunate over the years, that the treatments I did eventually WORKED, to bring my numbers down, at least for many months, often for over a year, if I was "lucky". My Drs treated me with the most up to date immunotherapies, and chemo regimens, etc. I had access to any med, any treatment regimens out there. Sure I had yucky side effects 4 to 5 days of the week, but I had a few good days each week too. Now, sadly, little helps. Hardly a good day ever. I hurt all the time. Chemo, immunotherapy is not working. I have too many tumors, lesions, masses, etc, that "there's too much to radiate now", my kind Radiology Oncologist says. Myeloma is angry and more powerful., which of course makes sense, 11 years later (prob even more years, with smoldering MM 2009 prior!) So hard to wrap my head around all this, but pain and fatigue is the ultimate reminder 24 7... 

Sorry for the rant, now to the facts...

Take daily 40mg Dex steroids for a total of 160mg per week now. Feels good in the beginning, then the yucky crash comes on. Didn't have the yucky during initial treatment Jan 2010 - June 2010.

Began Radiation for my R side clavicle, collarbone fractures, R side rib fractures, and for the R side Lung mass today for the entire week. 

Continued the 40mg Dex steroids (4 days on, 4 days off) also. Hoping pummeling myeloma with 160mg roids per week, for several weeks will help, like it did back in 2010. My Dr is concerned doing this amount, but seriously, in my current status Why Not!

Pain is less than the EXTREME, debilitating pain I had in June, July, Aug, Sept, etc. but always there. I cannot believe everything I continued to do and accomplish back then, while suffering so much. The "universe" let me be there for Jim...

Pain is slowly lessening with steroids and radiation, but I am so much smarter now about how I take pain meds, Flexeril muscle relaxant, steroids, etc. I am also much smarter about not trying to "force" myself to do household, ranch chores when I really shouldn't be bending, lifting, twisting, moving, etc... My amazing adult kids and friends come daily to help with things, and I am learning to just let things go, well, to an extent, but really not that much. Jim and I were always such "do-ers"... so hard to not "do"...

Hurts when I breathe

Hurts when I move

Hurts when I turn

Hurts when I use most every part of my dysfunctional body

Hurts just being me, and who I used to be

So wish I could do ranch chores like I did before

Sadly all the past "fun" animal interactions, are just challenging chores now

Hurts when I adjust sitting, trying to relax, trying to sleep

I feel the crazy L side clavicle, collarbone tumor "clunking" always, even though it was radiated for a week. Pokes into my neck, so crazy

My front and back neck hurts, could that be from radiation or more bone damage

Hurts when I spend time (lots of time) on the toilet with diarrhea several times a day

So much sitting I never did before

Food is a challenge, not much tastes good anymore, and I always have GI issues, hello Imodium

Sick of hydrating, always thirsty

So tired of water

Gag reflex more prominent now

Have to remember to take little baby sips

Body is trying to shut down, but I won't let it

Steroids help me so much, in so many ways

Yes, the crash is awful, but the hours I get relief before the crash is worth it

My CBC lab results are not good

Liver function a little higher each time

WBC always low

RBC always low now

RDW always high now

Platelets low

ANC low

Radiation- all this week for my R side collarbone, ribs, lung mass

Kyprolis IV immunotherapy chemo- Mon and Tues 

Continue High dose steroids- 40mg, 4 days on, 4 days off, for a total of 1600 weekly

Covid test prior to Biopsy

Biopsy- R side Liver-Kidney mass Friday Nov 20

Bone Marrow Biopsy- to stage Myeloma, and see if another cancer has joined the party...

Yes, myeloma, you have stolen my life. I am you, and you are me. Many can deny this, but I cannot. My whole life and daily activities are centered around dealing with myeloma, trying not to hurt more, or suffer more, or have GI emergencies. Ugh, the GI emergencies, so scary, yet so funny. Most everything I do, is "forced". Yes I always find joy in all that surrounds me. I do have so much that is wonderful surrounding me. I am very fortunate to have all the loving people and animals who want and need me still alive. Yes I am still incredibly grateful for all that I can still experience in light of all the pain, treatments and side effects. Every night, when I take the little doggies out, I look to the Universe, and ask, cry "WHY, why me"? 

I am "owned" by you Myeloma, and I cannot deny it... and I will never understand or know the "why"... until....