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!