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....

I'm So Sad... Scary Pet Scan Results

 10.30.20

Hello Friends-

I was just going to post my Pet Scan results from 10.24.20, (with little commentary), but then the irony of Halloween and Skeletons, bones, and spooky, scary results hit me. So here I am looking at the human skeleton and bones and organs and realizing how much I don't know about the human body. Well it seems that Myeloma wants to teach me a few lessons... Happy Halloween Julie, your skeleton is broken in so many areas. 

There are so many references to anatomy and physiology on my Pet scan and other reports, I have to always look up where things are. I didn't realize how far up our Rib Cage is. I didn't realize the placement of all of our internal organs. I always seem to think things are lower in our body then they actually are. Happy Halloween, my results are super spooky and scary :((

I've had Radiation all this week, except I cancelled on Wed, as I wasn't feeling good. Probably a combination of Mon and Tues chemo, steroid crash and (of course) new bone, muscle, nerve pain in my back and neck. I can never identify what type of pain it is. Can you? I never know if the pain and stiffness is from pulling, pinching something, or if I've cracked or fractured something again, or this time, if it's a side effect of the Radiation? This week is Radiation on my stinkn L side monster tumor that grew out of no where in summer. Remember the picture of that? Unbelievable. Well Radiation in July shrunk it a bit, but then it started to clunk into my L side neck, so my Radiation Oncologist wanted to radiate it again. My neck hurts, front and back, (muscles and nerves), and I've read I could have a sore throat for weeks, any time forward. Just never had so much pain in my life, and I can't stand it. I like being functional and happy, and pain steals that away :((

This monster is not that big on my chest anymore, but it's a big bump on the end of my L clavicle/collarbone. And so annoying when I move certain ways. It just grew so fast. I still blame Elotuzumab for all of this sudden insanity...

My L side middle-lower back hurts. Not sure if it's myeloma, or I pulled something, trying to do something around here. If I feel ok, (usually on steroid days), I want to be outside moving around, trying to do ranch chores etc, but I'm learning how limited I am, and trying to do anything I did before, has painful consequences. Just makes me so sad, as I used to think "retirement" would be so fun, just hanging out, taking care of our ranch, animals, plants, etc. That's all Jim and I wanted in our "Golden Years", along, of course, with being with family and friends.

Anyway, guess the Pet scan results were so alarming, my Oncologist called me yesterday morning and told me of all the new, or enlarged tumor, mass, fracture, etc areas. She spent a lot of time with me, explaining what the report said, and what my options could be. My Radiation Oncologist sent me a message that there are just too many areas to radiate, they can't radiate all of me... there's a progression of myeloma in multiple areas, etc. Bottom line, I have to brave up, and try new or more powerful chemos. Scary, so scary to me. Yes, Happy Spooky, Scary Halloween Julie. I hate, hate, hate new, unknown side effects. In the past, I always seemed to feel, do ok, on certain myeloma meds, even if my numbers were not good, but I did have an ok quality of life... I know too many myeloma patients that have done "aggressive treatments" (D-PACE?), and they are no longer here. Myeloma may appear to be "gone", then boom, they're "gone". I just want less pain, myeloma slowed down. I am not asking for an extreme result, and "cure" is not in my vocabulary at this time. I just want to live. I just want to feel ok. I'm not asking for my pre-myeloma life back. 

And here's my Scary IGA, M Protein, and Beta 2 results:

IGA Over 5000 now :((

Look at that crazy M Protein and Beta2!!! 

So to summarize, then I will post the entire report below... I have a new big mass near my R Kidney and Liver. It's big. They're worried about it. I'll have to have a biopsy on it. Ugh... ouch?? Makes sense tho, as I have had some dull and sharp pain on my R side for a while. It measures 6.1 x 9.4 x 9.2 cm!!! You can read the details in the report. My head is spinning... Seems as if all the masses, tumors, lesions, fractures, etc are larger, or growing, or more of them, etc. I just can't wrap my head around this. Will have to read and reread this. Amazing how smart and powerful Myeloma is, how it mutates, what it can do and does in our bodies. Why me tho. I am just so sad. I want to live...

Radiation, so amazing what is done...

Ok, here's the report. Thanks for reading and caring. Let me know your thoughts on all this. I just can't absorb it all. It can't be happening to me. I just keep thinking my body will "fix it" or it will turn out to not be happening to me. 

10/24/2020: PET SCAN: FINDINGS:

HEAD AND NECK:
Limited images of the brain demonstrate no focal asymmetric activity
to suggest metastatic disease. There is no midline shift or mass
effect within the calvarium. Please note PET/CT is suboptimal for
evaluation of intracranial metastatic lesions given intense
physiologic activity. Consider MRI of the brain to assess for brain
lesions, if clinically indicated. Last MRI brain 6/30/2020. Mild
heterogeneous activity of the clivus with limited evaluation due to
intense adjacent brain activity.

No hypermetabolic cervical lymphadenopathy is identified. Activity
of the vocal cords most likely phonation during FDG uptake. Bilateral
stable activity of the thyroid gland with SUV peak of 3 on the left
and 2.6 on the right.

CHEST:
The interval increase in size of the growth from the anterior aspect
of the right third rib expansile lesion now measuring 6.6 x 5.1 x 6.5
cm, compared to 3.5 x 2.8 cm on PET/CT from 5/7/2019. There is
circumferential increase in FDG activity with stable SUV peak of 4.4;
however, there is a low density center currently which is photopenic
on PET consistent with necrosis.

Interval increase in prominence of soft tissue nodule involving right
posterior third rib which now protrudes into the lung parenchyma
measuring 2.5 x 0.8 cm with SUV peak of 2.3 compared to 1.7
previously.

There is abnormal activity corresponding to pleural-based nodule
between the left 6th and 7th ribs posteriorly measuring 1.2 cm with
SUV peak of 2.8

Small bilateral pleural effusions. No hypermetabolic lymphadenopathy
in the mediastinum. No hypermetabolic lymphadenopathy in the
bilateral axilla or subpectoral regions. There is physiologic uptake
in the myocardium. No hypermetabolic focus bilateral breast
parenchyma.

Intense abnormal activity of the left sternoclavicular joint region
with SUV peak of 4.5 compared to 2.9 previously.

Incidental finding of an azygos lobe, a normal variant.

ABDOMEN AND PELVIS:
Interval development of a large mass between the liver and the right
kidney measuring 6.1 x 9.4 x 9.2 cm with SUV peak of 4.5. There is
compression of the liver and the right kidney with this mass but
there appears to be at least a partial fat plane of separation
between the mass and the liver and the right kidney. The right
adrenal gland is not definitively visualized. There is photopenia of
the low-density lesion in the periphery of the right lobe of the
liver measuring 3 x 2.5 cm and left lobe of the liver measuring 1.3 x
1.6 cm. There is a round nonspecific focus anterior aspect of the
left lobe of the liver measuring 1.3 x 1.5 cm with SUV peak of 3.3
and hepatic lesion cannot be excluded. There is heterogeneous
activity in the remainder of the liver. There is a round focus of
intense abnormal activity in the liver, just anterior to the large
right upper quadrant mass, with SUV peak of 4.4..

There is mild activity in the stomach and heterogeneous activity
throughout the bowel. There are areas of segmental increase in FDG
activity throughout the bowel. Persistent activity in the anal region
with stable SUV peak of 4.3 compared to 4.2 previously.

Incidental note of cholelithiasis. Heterogeneous activity of the
spleen. No focal abnormal activity of the left adrenal gland. The
right adrenal gland is not definitively visualized. Low-density
lesion lateral aspect of the left mid abdomen measuring 2.2 x 1.6 cm
photopenic on PET.

There is physiologic excretion of FDG in the bilateral kidneys,
ureters and urinary bladder.

MUSCULOSKELETAL:
Evaluation of the osseous structures demonstrate interval increase in
abnormal activity of the lytic lesion at the right distal right
clavicle with SUV peak of 4.2 compared to 3 previously. Interval
increase in intense abnormal activity of the left sternoclavicular
joint region with SUV peak of 4.7 compared to 2.9 previously on
PET/CT from 5/7/2019. Interval increase in diffuse activity
throughout the spine. As a reference, L4 vertebral body activity has
SUV peak of 3.8 compared to 1.7 previously. L2 spinous process
abnormal activity has SUV peak of 3.8 compared to 2.5 previously.
Heterogeneous activity of the sternum with SUV peak of 3.1 compared
to 2.2 previously. Mild heterogeneous activity of the clivus.

UPPER EXTREMITIES:
Partial visualization of the upper extremities on CT demonstrate a
small focus of activity left distal humerus with SUV peak of 1.4.
Increase in activity bilateral wrists soft tissue distribution may
represent component of degenerative changes.

LOWER EXTREMITIES:
Interval increase in size and abnormal activity along the right
proximal femur with SUV peak of 4.1 compared to 2 previously.
Abnormal focus left proximal tibia with SUV peak of 3.4. Interval
increase in size, multiplicity and FDG activity of the right proximal
tibia shaft lucent lesion measuring 2 x 1.8 cm with SUV peak of 3.4
compared to 3.2 previously.


IMPRESSION:
Restaging PET/CT demonstrates unfortunate evidence for progression of
disease with interval increase in size of the growth from the
anterior aspect of the right third rib expansile lesion now measuring
6.6 x 5.1 x 6.5 cm, compared to 3.5 x 2.8 cm on PET/CT from 5/7/2019.
There is circumferential increase in FDG activity of the mass with
stable SUV peak of 4.4; however, there is a low density center
currently which is photopenic on PET consistent with necrosis.

Interval development of a large right upper quadrant mass measuring
6.1 x 9.4 x 9.2 cm with SUV peak of 4.5 located between the liver and
the superior aspect of the right kidney. The right adrenal gland is
not visualized.

Interval increase in prominence of soft tissue nodule involving right
posterior third rib which now protrudes into the lung parenchyma
measuring 2.5 x 0.8 cm with SUV peak of 2.3 compared to 1.7
previously.

Interval increase in abnormal activity of the lytic lesion at the
right distal right clavicle with SUV peak of 4.2 compared to 3
previously.

Interval increase in intense abnormal activity of the left
sternoclavicular joint region with SUV peak of 4.7 compared to 2.9
previously on PET/CT from 5/7/2019.

Several additional osseous findings: The spine, right femur,
bilateral tibia and sternum which have increased in FDG activity
compared to prior study, as detailed above. As a reference, diffuse
activity throughout the spine. As a reference, L4 vertebral body
activity has SUV peak of 3.8 compared to 1.7 previously.

Pet Scan 10.24.20

Stolen goals... 

Thank you for reading and caring as you do. 

Low Labs, New Blood, New Challenges, Radiation, Myeloma Just Loves Me

10.20.20

Hello Friends and loyal readers. 

I certainly do not have a "boring" life. Myeloma just keeps on, keeping on, relentlessly. Is this really my life? I still can't digest and accept what goes on with me on a daily basis, even though I am 11 years into this crazy ride. 

My heart is so sad, my mind is processing 24 7, Jim's loss to all of us. But he is at rest and at peace now. Going through his medical decline with him became a window to my future in many ways. Experiencing his Alzheimer's decline, his mind and body decline, his journey from an extremely independent, extraordinarily competent man in all ways, to being trapped in a body that betrayed him, was on several levels, a telescope into my future. We will not leave the earth in the "same way", but experiences and lessons learned daily from his journey, solidified so many things for me, regarding how Myeloma can, will and Will Not take me down. Simply put, if you still have your "mind", no matter how "sick" your body becomes, you still have "choices". Choices eventually were completely stolen from Jim, and I became his "mind". Yet even close to his passing, there were still expressions of preferences, but not with the ability to control the outcome. I am so glad we were here as a family for him, helping to guide his way, and lovingly "read" his needs, and fully be there for him on every level. No doubt, it's very very hard, and very very challenging for all caregivers involved. But frustrations aside, it's a huge, incredible responsibility to "fully" care, mentally and physically, for another adult who cannot care for themself. It's really a huge responsibility, especially when done with love and care. Myeloma, you won't take me out this way... you hear me Myeloma... oh no you won't...

Jim with his beloved ranch chore assistants,

Doing what they loved most, side by side, everyday...

Now that we are half way through October, I continually reflect back on how much was going on with me personally, all the while caring for Jim (with of course wonderful help from our adult kids and professional caregivers). Fortunately in 2019, the combination of Velcade, Cytoxan, Dex steroids allowed me to function relatively well, so I could be there for Jim, the animals, our life etc. But when things changed in late May, June, July, August 2020, due to my horrendous reaction to Elotuzumab, I just can't believe everything I pushed myself to do, even though I was so so "sick" and in pain beyond pain. Honestly, when I couldn't get rid of the fever, had a difficult time catching my breath, and my collarbone, shoulder, neck, head pain was so awful, and my CBC labs continued to decline, while the myeloma labs continued to climb, I really thought I would "go" before Jim. Fortunately weekly high dose Dex steroids, and my formula of Tylenol, Flexeril, low dose steroids and an inhaler, "saved my life". If I listed all the things I continued to do most days, you just wouldn't believe it. I can't, looking back... Elotuzumab, for whatever reason, you totally sabotaged my body, myeloma loved you, and grew tumors, awakened lesions and fractures, and created or awakened "masses" that were dormant, or not as big. I just can't get over what happened to me during that time... 

So here's what's going on now:

I began Kyprolis last week, as we determined Velcade had run it's course and could no longer beat up myeloma, beating me up. But wait, not only did I begin Kyprolis, my Dr determined I needed a blood transfusion, as my Red CBCs were "dangerously low". so 2 bags needed! What??!! I didn't even need blood during my stem cell transplant in 2010, just one bag of Platelets. Well, this news "scared" me, that I was so "bad", but also because the unknown source and "cleanliness" of the donated blood was very worrisome to me. Don't get me wrong, I deeply appreciate the Donors, but I still fear any new treatment going into my body. But I pushed my fears aside, and trusted the screening process and my medical "advisors", and allowed someone's healthy blood in to assist my sick blood. My Dr and Nurse did tell me about an alternative injection,  Epotin (Procrit, Epogen)  , but when I read the side effects, and "possible risk of tumor progression" in blood cancers... I came to my senses and accepted the donor blood. Well only one bag, because of course complicating this double infusion day, was our "last visit" with Jim at the mortuary, for the final ID and loving good-byes... (but that's another story)... and I just didn't have time for 2 bags that day. Fortunately, I did ok on the 2 day Kyprolis infusion, and other than a large bruise, hematoma where the blood transfusion was, no side effects, thank goodness, to either. 

Hello donor blood-

Thank you donors for saving our lives!

Wow, medical science always amazes me,

and what a body can tolerate, is mind boggling!

In my veins, and making me stronger temporarily. 

Blood, then Kyprolis

amazing what the body can handle!

So all that was last week Mon and Tues. Did labs on Sunday, and sadly my Red CBCs weren't all that different. Yes I should have done the 2 bags, but with the timing of Jim's last viewing, I just didn't have time for the 2nd bag, plus I wanted to see how I did before accepting 2 bags of donor blood. 

Also showing from my Sunday labs, my White CBCs (WBC) were so low at 1.4, that I received an early morning call yesterday from my chemo pharmacist, that they were CANCELING my Kyprolis infusions for Monday and Tuesday, and he and my Dr want me to do 3 days of Zarxio (Neupogen) again, to bring up my WBC. Here we go again. body sabotage again. Most likely the myeloma eating me up, and enjoying my new blood, and maybe the Revlimid yanking down my WBC. I remember it did that years ago, when I was on Revlimid for years. Hello again to an even more compromised immune system. Hello bubble life forever. Thank goodness I have a beautiful little ranch to quarantine in, as I've done forever... Corona/Covid, you got nothin on me. Used to this crazy life of cooties out to get me. 

Hello Zarxio injections to bring up my super low WBC

Self injection to my belly-jelly, no problem. 

Expert here now lol

And so it goes for me, on and on and on go the challenges. Thank you Dex steroids for giving me a lift once a week. And thank goodness the awful, horrible pain I experienced in the summer, has lessened to the point, that I have actually gone days or so without any Tylenol or muscle relaxants! Whoohoo, I think the remnants of Elotuzumab is finally getting out of my system. 

And finally... Radiation begins this Saturday for 2 weeks. Hopefully this detailed zapping of both clavicles, specifically the Left side collarbone tumor now bumping into my throat will shrink, as well as shrinking, killing the lung "mass", as well as welding back together the Right side clavicle, collarbone fracture, as well as the Right side rib fracture(s), and other assorted areas I can't wrap my head around! Seriously, can you believe all this. Oh, and lest I forget, a full body Pet Scan later on Saturday too. Have to remember to fast for the glucose contrast injection. I think I'll just go horseback riding and forget all of this. How's that sound ;)) Ooopps, can't forget to do labs on Wednesday to see how the Zarxio has (hopefully) increased my WBC enough, so I can resume Kyprolis on Thursday and Friday. 

So that's just a tiny portion of my life. The medical side that is. If I gave you a run down of all the tasks and events I have to keep up... it would make your head spin, like mine always is. Can't forget to order hay for the horses, feed the almost hibernating tortoise, then worms and clean water for the inside turtle, feed all the doggies, and kitty care, birdie care, clean the house, laundry, don't forget to eat and take my chemo and related pills, and it's tax bill time too, and process everything related to Jim, make sure to keep supplies ordered for our household, hydrate, eat, swiffer, vacuum, water the plants not on sprinklers, have the horse vet over for our senior horses with issues, paperwork, paperwork, paperwork, etc etc etc... calls and more calls, texts, emails, business stuff, etc etc, and that's just a tiny representation... Normal stuff for a "normal" person, but with all my tumor and fracture limitations, plus constant fatigue from chemo and myeloma, each task is a challenge right now. And to think how much Jim did when he was well and I was working. We were an amazing team...

We all have a complicated story, challenges and life demands. We all have our mountains to climb, and I never forget all the beauty and good things to be grateful for daily... One foot in front of the other, I always tell myself. As long as everyone has food, water, love, and health care, it will be ok. And yes, I do have wonderful help from my adult kids, and others. But ultimately, it all circles back to me, to be in charge of it all, while I can. 

Thank you for checking in, caring as you do, and following my story... tell me yours too!

Can My Life Get Anymore Challenging...

 10.10.20

Hello Friends, 

Ah, so much to share and tell... if my life was made into a movie, it would be termed "fiction" and "make believe". I just can't fully absorb and process all that is going on with me personally and with our family.  If I didn't have so much in written reports, medical docs, CT, xray, Pet scan, MRI, and Dr notes, I don't think I would "believe" it all nor would you and all those who I share my story with. 

Back in the day, after that fateful diagnosis day of 12.30.2009, I think people doubted how serious and dire my situation was, as I didn't look much different for quite some time. 6 months of HIGH dose Dexamethasone steroids, at 40mg per day, for 4 days on 4 days off, did give me the bloated "moon face", and I tolerated the steroids "too well" as I don't recall having the intense lower GI events I came to know in the years that followed :((  I was still able to work part time, and do a lot of my pre diagnosis life, as I was in Denial, shock and the Now Way, This Can't Be stage! Sure the SCT was a major life changing event in so many ways, and my body went through sooooo much, and has never been the same since, but overall, my side effects weren't as horrendous as some myeloma patients experience. Here I am 22 months later, blonde hair back, as well as my goofy, too optimistic, I'll always be ok, personality :))

2012 SCT reunion

2 years after my stem cell transplant

I continued to do ok for years, yes years, on low dose Revlimid maintenance alone, then Revlimid and Dex when my myeloma stats increased summer 2013. I did have daily "volcanic, turn on the faucet", little warning diarrhea as I was only on 20mg Dex steroids, but overall I was able to be me several days a week. (My crazy stories are posted by year here, if you want to go back in time and read about my "back then" experiences :))  

After becoming "Refractory" to good ol Revlimid, I went through Kyprolis Dex (2015, 2016), then Pomalyst Dex (late 2016), then Darzalex Pomalyst Dex (2017, 2018), then Velcade Cytoxan Dex (late 2018, 2019, early 2020), then the evil (for me) Elotuzumab (mid 2020), with Revlimid and Dex. I also had a horrible reaction to Zometa in 2018, which was similar to my Elotuz reaction. Extreme bone and body pain, and sudden awareness of my lesions, fractures, and tumors. I had Skeletal scans annually, and other scans and xrays, but up until early 2018, when I finally had a more detailed Pet scan, MRI, etc, I really didn't know how bad my bones were from the myeloma damage, as I never really had alarming EXTREME, DIBILITATING PAIN like I have in the last several years. Guess "age", survival time, time on chemos, and years of myeloma eating me up, finally caught up with me. 

I remember being told about lesions, tumors, holes, etc, in early 2018, but I just didn't fully comprehend the extent of damage, as I wasn't experiencing the level of DAILY pain I do now, since June, July, August. I do recall sneezing or coughing or bending wrong, and ouchie! something snapped, but I always presumed it was muscular or nerve, unless I went to Urgent care for an xray and found out differently lol. Then after just ONE Zometa infusion with a fever, full body aches, etc, I experienced extreme Sciatica type pain, and pain in other areas where I had all the bone damage (sacrum, hips, pelvis, femurs, etc). I was suddenly awakened that this bone deterioration was REAL. But as awful as it was, nothing like what I experienced this June July August, and to a lesser degree Sept to now. Well to be fair to myself, I did have a lot of pain in previous years, but I attributed it to all the fun-physical things I did here at our little ranch. But again, I just don't recall being so incredibly limited, and disabled by pain daily and for months. I also had life limiting fatigue daily (except on steroid days), and I had life limiting diarrhea, I got the "normal" sicknesses because of my compromised immune system, but I always got better eventually. I never had pneumonia, nor was I ever hospitalized, etc. I was "sick-well". Meaning I was very sick with Myeloma, but often felt well enough to remain somewhat in denial of the seriousness of my diagnosis. Maybe it was because I was "younger" lol. I always forget that as I'm battling this myeloma insanity, I am also aging lol. Almost 11 years with this monster gives me "survival pride", but also recognition that each year I survive, I deal with more and more not so good challenges. 

What strikes me as I write this, is I've actually "forgotten" a lot of my myeloma journey details. Not Alzheimer's forgetfulness, just so much has happened, that many of my past details have faded a bit. I used to be able to recall all the little details of all my treatments, side effects, pain and bone events, and myeloma life events etc. Thank goodness I have my history noted here in this decade old blog! I do have to admit, I was a bit smug about my situation and prognosis back in the day, and didn't really accept the seriousness and intensity of my diagnosis and situation, as I always seemed to respond well to any treatment tried. Now, not so much. I felt so much more in control back then. I felt hope that there always would be medication that would temper the myeloma, and I wouldn't feel awful every day. I'm not losing complete hope now, I'm just jarred to reality now, that I don't have tons of treatment options, and I am very weary and beat up from almost 11 years fighting. And I am not as Brave and Confident as I used to be. I always fear unknown side effects of new treatment options, and am therefore scared to try new treatments. Long term illness eventually takes a toll on you physically and mentally for sure. Especially since I seem to feel "sick" or in pain, or disabled most of time, with all the tumor, lesion, mass, fracture pain and the extreme fatigue I have now. But to be clear as I rant here, I am much much better than I was June, July, August. I am just reflecting on how much this myeloma journey has affected me and changed me, no matter how I look on the outside.

So here's what's going on now...

We stopped Velcade, as my Dr doesn't feel it's doing any good anymore, and we see my IGA and M Protein escalating out of control.

We discussed other treatment options, and of course I get "scared" of new side effects, so I asked if we could try Kyprolis with Revlimid and Dex, as I haven't ever done that combo. Back in 2016 I did Kyprolis and Dex, but not as a triplet. She also had me do 3 injections of Zarxio/Neupogen to bring up my Neutropenic WBC status. Sure did help, but it's boost has worn off. Labs tomorrow for my current status. Just wish I could feel better and more energetic so I could accomplish all the tasks and outside chores I used to do so easily. I'm realizing I never had to deal with super low Reds, Platelets, Hemoglobin, Hematocrit, etc. 

This past Thursday I met with my Radiation Oncologist for "planning and mapping". Had more scans, I think a CT this time, as it was without contrast. The Techs marked all my areas to be radiated with permanent marker. I look like someone played a prank on me, with all the circles and lines on my neck, collarbone, chest, etc. My Radiology Dr is most worried about the "mass" on/in my R side lung, which is 70+mm. I think I posted a pic previously. She can't believe I can breathe as well as I can. They will also zap my R collarbone where there's a fracture and lesion, and my R side ribs where there's a fracture, and go back and radiate again, the crazy tumor on my L side collarbone that is now putting pressure on my neck. If I move a certain way, it CLUNKS into my neck. So weird! How did all this happen to me. I was so smug I didn't have "bone involvement" for years. Naïve me!

Radiation begins Oct 24 for 2 weeks. It will also be for a longer time each session then my previous radiation. 45 minutes for the entire process, each session. This will be my 3rd radiation go round. Wow. I sure hope they can put this Humpty Dumpty back together again, and I can be pain free again. Maybe all this zapping will scare off myeloma...

Scan machine from Thursday

Oh if Jim knew everything going on with me, he would be so devastated. I remember when I was really suffering this past August, and I stayed in bed all day with a fever and extreme pain, he managed to make it down our hallway with his walker to get to me, and he was able to form words, asking me, "Julie, are you ok?" So amazing as that was only about 6 or 7 weeks before he passed, and he really didn't walk much or speak much at that point. He was always so worried about my situation, and it's so sweet all the stories everyone is telling me about how he felt so helpless and scared after my diagnosis. It's a close tie which is worse, Alzheimer's or Myeloma. Do you want your brain function or your body function... the loss on all levels in just immeasurable...

My 8th year myeloma survival Bday

Thank you for checking in and caring about my story :))  I really appreciate all your heartfelt comments on my last post regarding Jim's passing, and all my posts. Still isn't real to us... He had a long, wonderful life, several lives really. But still so sad his last few years were ambushed, and his most beloved activities were stolen from him. He just wanted to putter around our little ranch, take care of all the maintenance, and nurturing of all lives here, human, animal, plant, mechanical, etc. 

Live each day as fully as you can, and appreciate the days you feel well. Health is theeeeee most important thing. All else can be solved if you feel well and can function with independence and freedom. Body sabotage is just the worst... 

10.12.20................... Oh No...........

OMG- just returned from starting my "new" chemo Krypolis (old to me as it worked successfully in 2015, 2016), and I was informed my Dr also wants to do 2 units of blood transfusion tomorrow... and tomorrow is Jim's "viewing"... AND I AM INCREDIBLY NERVOUS ABOUT BLOOD TRANSFUSIONS, ESPECIALLY WITH ALL THE DISEASES. I want to refuse it, even though my WBC, RBC, Platelets and Hemoglobin are "dangerously" low. Just received a call that there is another option called Epoetin injections. I will find out more tomorrow... OMG can my story get more complicated... yes of course it will... Myeloma, the gift that just keeps on giving :(((((

He's Gone...

 

Said Good Bye to my amazing Cowboy 9.29.2020

Tim McGraw - Live Like You Were Dying (Official Music Video)

OFFICIAL Somewhere over the Rainbow - Israel "IZ" Kamakawiwoʻole 

One of Jim's favorite songs from his Hawaiian heritage

I cannot write much, as I am so overwhelmed with loss and exhaustion. The most wonderful man in world passed yesterday from horrible Alzheimers... he is at peace, finally... but his loss is immeasurable. He's been here at home with all of us, during his awful decline, and he took his last earthly breaths with us... So tragic, so unfair for such a hard working, giving, loving, selfless, caring, do everything for everyone else, man. All he wanted in his later years was to putter around our ranch, care for his roses, all the animals, his mechanical toys, and all of us... If Alz had not stolen his brain, he could have lived beyond me, as his body was still strong for a man his age... 

Me,... my IGA is up 400 points from last month... I'm now over 8x the high end of normal :(( 

My CBCs are so low, Dr cancelled my Velcade injection on Monday and wants me to do a few injections of Zarxio (Neupogen) this week. I'm Neutropenic again too with an ANC of .79... Scary!.. Have a Dr appointment Monday. Will probably have to accept my current chemo of Revlimid, Velcade, Dex is not working. Will probably have to accept a new treatment plan. Have Radiation appointments in October for all my lesions, masses, fractures, bone deterioration, etc. I hope all goes well, and I don't have a pain repeat like what happened in June, July, Aug. Recently my R side chest, R side, collarbone, and back is giving me new extreme pain. Especially upper R side chest area, where the "lung mass" is. Maybe a fracture is poking into my lung lol. Hurts to breathe. Myeloma just never stops eating me up alive...

Live your life. Don't put anything off for long. Time is too assumed. We think we have so much time, so much future... then we don't...

Thank you for checking in and reading... more next post...

Getting Better Slowly

 9.20.20

Hello Friends, 

Just a brief post as I'm completely beat up due to my husband's complicated and declining health situation.... 

Fortunately, I'm slowly feeling stronger and with less pain. Fevers gone for about 2 weeks now! My L side Clavicle lesion(s), fracture(s), tumor, etc is not as painful since Radiation in July, altho the crazy spontaneous tumor that suddenly grew out of no where, on the end of my L collarbone, is still there, and kinda clunking into my throat. So weird.

My R side Clavicle lesion and fracture is less painful also, along with the pain in my head and neck from all the bone disintegration and the R side skull mass, which caused unbearable headaches back at the end of 2019 and beginning of 2020 . If you remember my pain crisis posts in June, July, Aug, where the PAIN was off the charts, I have fortunately slowly moved past that, and can move my arms above my head, and do many body movements and finally dressing myself, showering, driving, etc, as couldn't do for weeks and weeks. Again, I really believe I had a severe reaction to Elotuzumab/Emplicity, and that particular immunotherapy/chemo/treatment caused extreme nerve and muscular pain, and grew tumors like weeds, awakened lesions and fractures, and generally wreaked havoc on my body for several months. Again, only other time I experienced something similar, was in 2018 with a severe, very similar reaction to Zometa.  

I continue to do 40mg Dex steroids, with Velcade and 21 days of Revlimid. Just like back in the day when I was on Revlimid, this treatment  is causing me to "live" in the bathroom about 2 hours after I eat. It's so dang predictable, it's funny. I don't mind a good daily GI cleanse, but basically everything I eat goes thru me. I don't get much done, as I spend so much time in the bathroom lol. Just took Imodium, as I've cleansed enough for one day, and I'm "pooped out" and so tired LOL... If it wasn't for steroids, I'd probably look anorexic. Mondays are my treatment days, and my main eating day, but that sure "backfired" last Monday, when I ate a lot of Tri Tip, trying to boost my Reds, Platelets, Hemoglobin, etc. Ugh, was cleansing for hours and hours the next day, and actually felt sick, but that was also due to the "normal weekly crash". 

Lab results today were low, low, low, and I'm really surprised, as I feel stronger and better. Thought they'd be closer to the the low end of normal, rather than the low low low they are... I also posted my Myeloma status results on 9/13, so don't miss that crazy results post. Tragically my husband Jim continues to slip away, and is basically non verbal, has forgotten how to walk, stand, etc and just this week, has lost interest in food and drink. Occasionally, one of us can get some hydration in him. He's basically in the hospital bed 24 7 now. After chemo tomorrow, I will meet with his home health care team and discuss moving from Palliative care to Hospice. I just cannot believe this is our life. I can write about all this awfulness as I do, as it is so completely unreal and out of body to me. I just keep thinking I'll wake up to a new day, and we will be who we used to be...  what-to-expect-in-the-late-stages-of-alzheimers-disease 

Right side lesion and lung mass 

Here's my R side Clavicle fracture, lesion and lung mass. I'm so ignorant of Anatomy and Physiology, I didn't realize my lungs were so high up in my chest. After my Dr sent this pic to me, I didn't realize the round white lump was the lung mass they want to radiate, along with the fracture and lesion on my collarbone. Not sure if you can see the measurements (click on the pic and enlarge, and then you'll see the mm notation). The Clavicle lesion is 33mm and the lung mass is 70mm. Whattttt!!! No wonder my Drs are worried and didn't want me to wait to do Radiation. I am just now putting this all together in my blonde, chemo, fever fried brain... just didn't realize the size of the lung mass until I saw the measurements when posting the pic for this blog post. 

Thanks for reading and caring as you do. I really wish I was making all this up, and it was just "fake news", but Jim and I are a real life horror story right now... 

Crazy Labs Update!

 9.13.20

Hello Friends-

Decided to start a new post with screenshots of my recent labs (rather then add to my 9.10.20 post), and what better day than the 13th to do so.

I am so thankful I am feeling better each day, and my side effects are lessening daily! I am treating myself like GLASS, like I have been for some time, but even more so. I just don't want a repeat of June, July, August if at all possible. 

Had a phone appointment with my Radiology Oncologist on Thursday, and went over my xrays and scans again. I sure wish I could read the CD DVD disc they gave me, but it's all UFOs to me lol. The concern my Dr has is the lesion on the Right side collarbone, and a fracture there too. That's were my pain is now, but again, so much less than in the weeks prior. She is also concerned about a fractured rib that also has a MASS that also is growing into my Lung. Huh... omg, all this is so complicated and foreign to me, as I used to be so healthy, I just can't wrap my head around all this myeloma damage. 

So guess what I said?

Yep, let's postpone treatments to October, as I just want to get rid of these crazy side effects, and feel better. She really doesn't think my fevers, and other crazy side effects are Radiation related. In 2018 Radiation gave me such relief, so that's why I attribute all my insanity to Elotuzumab. I don't want to scare my fellow myeloma warriors about Elotuz-Emplicity, as it's probably a great treatment for IGG and Light Chain type myeloma. But my IGA type myeloma sure got pissed off, and all Hellllllo broke lose for me...  One of the reasons I feel this way, is that my Lambda Light Chains are high, and I've never had that before. I've never had high Light Chain myeloma labs, so some sort of Mutation must have happened. You can read about Elotuz here and other Myeloma sites:  Elotuz-Emplicity, themmrf.org Emplicity 

Ok, here are screenshots of my recent labs, and today I will take more labs for my Chemo lab visit tomorrow for retro Velcade. So far, just the "regular" side effects from Velcade, Revlimid 10mg and Dex 40mg. You know, the Neuropathy, then Dex crash, then hours in the bathroom for several days, or hours after I eat, Neutropenia, etc. If it wasn't for the Dex, I would look anorexic, as most everything goes thru me lol. But I don't mind that, good to be cleansed all the time lol. Thankfully I don't have the crazy debilitating pain in my head, neck Clivus, and Left side Clavicle, hands, arms, etc much any more...

Crazy not much change in my IGA

Thought it would be thousands more

But still 8x the HIGH end of normal. 

Crazy I'm still as "functional" as I am :)) 

Maybe Velcade, Revlimid, Dex 

is doing something!

Or Mutation is at work

So weird!

Never had high Light Chains!

Mutation activity??

But this one!

This is the one that made me think my 

IGA would be crazy high. 

See why I think everything mutated

Thank you Elotuz!

I was 4.3 at Diagnosis Dec 2009

and now this! 

So who really knows what's going on inside of me. I would love to have a chat with Myeloma and hear what really is going on. Labs tell everything, but hey, I want it in words :))

Last CBC and organ status labs were my usual low, but I put myself on Iron, Will be interesting what labs say today... 

But my goal at this point, is No Pain, Slo-mo Mobility, Quality of Life, and myeloma labs that are steady. I don't even care if they're high at this point, as long as I feel ok, can function as I did before Elotuz. A steady, consistent roller coaster is ok by me. My IGA has been as high as 5750 at Diagnosis Dec 2009, so not there yet...

Hopefully my next post will be "just kidding", I'm fine, they have my labs mixed up with my invisible twin. I just want to get on with my "missed life"... 

So I lament and have pitty parties:

Senior horses I will most likely never ride again, 

Beaches, Forests, Natural Wonders I will probably never be able to visit again,

Food I used to love, now doesn't give me any pleasure anymore, just diarrhea and heartburn, 

Our own backyard, gardens, flowers and animal critters wait for my attention that I won't be able to give, as pain and fear of fractures and broken bones limits everything I do...

And I so miss get togethers with family and friends. so many places I wanted to go...

Please friends, just don't put things off, hoping, planning you can do it all tomorrow or during your "Golden Years"... I was too smug and presumptuous about my once "good health" and my future, our future... poor tragic Jim...

Thank you for reading, caring, and commenting as you do. Means the world to me that my blog is meaningful :))

Finally Some Relief!

 9.10.20

Hello Friends,

Finally! 

I am feeling better and getting relief from the fevers and excruciating pain!

I don't want to jinx myself, but I haven't had a fever now for a week, temp staying between 97-98s! It feels so good to be on the road to "normalcy" . And the horrific pain in my collarbones and shoulders is slowly lessening, and I have so much more range of motion! So excited about that. I can shower and dress without help, and most importantly, I can once again drive myself to Labs and medical appointments!!! Just beginning to attempt little chores around the house, and trust me, I am so very careful and continue to treat myself like glass.

I truly believe I had some extreme reaction to Elotuzumab, like I had with Zometa in 2018. It's so crazy  how we cancer patients put all these medical chemicals in our bodies, NOT KNOWING WHAT THE REACTION WILL BE!! Sometimes "ignorance is bliss" or honestly, I have just given trust and control to my medical team, that I will be ok with what I am treated with. Of course I've spent endless, uncountable hours researching Myeloma and treatments since my Dec 2009 diagnosis, so I know what all the myeloma treatments are about, but there's never any advance knowledge how our bodies will respond and react to each treatment. I read all about the side effects of all the treatments proposed, and do what I can to anticipate various side effects. For the past 10.9 YEARS of treatments, I have micromanaged myself quite well, but the reaction to Zometa and Elotuzumab completely caught me off guard and I hope to NEVER EVER experience again what I went through in June, July August! Crazy how I do so well with some, and then this... but I'll never know what REALLY happened. I'm just so very grateful I am on the road to feeling better and feeling like "me" again, and feeling hope again. 

Have a phone appt with my Radiology Oncologist soon, so I'll be back to continue my update and post my crazy Labs! I think Elotuzumab even "mutated" my IGA type Myeloma, as I have a higher result on my Lambda Light Chains, that I've never had before!

I'll be back, thanks for checking in, and being such a loyal follower :)) 

Changes Coming, So FRUSTRATED!

8.30.20

8.31.20

Hello Friends, 

Dr appt today, I will report back and update you on my lab results and plan...

(Update... No update, lol... Labs still not back yet. Dr thinks it's due to all the Covid tests backlogging everything in the processing Labs. Will update this update when I have my IGA and M Protein status back... but then again, the waiting is actually kinda nice, so I can live in LaLa land for a few more days... Haha... I know they're bad... see what I mentioned about my Beta2 Microglobulin below...)

I am soooooooooooo angry, sad, pissed, upset, devastated with my situation

Finally tho, I am feeling less pain in the areas of all my tumors and lesions

Finally less pain from (what I think) was caused by Elotuzumab/Emplicity

Finally month long fevers are lessening

All my labs (from my lovely visit to Urgent Care), came back NEGATIVE for any virus, bacteria, pneumonia, etc. Negative, everything Negative. No bugs and germs inside of me. Just low low low CBC levels.

Everything I am experiencing is from frkn Myeloma consuming me, and recent treatments

I am so sick of being sick!

Don't understand why I received this life sentence

I am not strong, I just do what I have to do, to stay alive

And that's not really effective any more...

I am exhausted, beat up, have little life (yes I am grateful for all that I do have), but I am so very very frustrated that Myeloma has stolen my life, makes me feel so sick 24 7, and is seriously trying to kill me. I had so many plans for this time in my life. Yes, sorry, I do whine, WHY ME, WHY ME?

Appears current Dex, Velcade, Revlimid is NOT really working. 

Shocker Julie, what did you expect, going backwards to 2 previous chemos you're Refractory to.

But did this cuz I just can't stand the idea of any more side effects right now! the Elotuz side effects just did me in. July and Aug worst months ever!

Cannot see all my lab results from Friday... that's another thing I'm pissed at. Patients should be able to see all their labs as they come in. But again, I understand they restrict "bad" results, because many people panic. 

Need to get my Dexified emotions under control for appt this afternoon

So much I am feeling out of control of, and I don't like it,,,

As just a hint of how bad I am: 

Beta2 Microglobulin at Dec 30.2009 diagnosis was 4.3 (70% myeloma cancer thru out me)

Current lab result is 5.7 (so I'm probably 90% myeloma cancer now)

OMG, this cannot be my life. Someone stop this awful movie I am in! Jim continues to decline daily. We moved his hospital bed into the family room the other day.

He can still get up with lots of physical help, emotional support, and caregiver muscle, but he's in a wheelchair if not in bed, needs help with everything, and of course everyone turns to me for help, recommendations. I cannot help. I don't want to help. I am so exhausted from me and my issues, (except on Monday 40mg Dex steroid days lol), I look awful, rarely fix myself up anymore, I don't want to be a facilitator, for anyone or anything right now, but I have to, too many lives here I am responsible for. I don't have the energy to help myself, let alone him, and all the responsibilities around here, but I don't have a choice. Seriously incredible all I still do and all I have done these past few months of torture and pain and fevers. (Actually incredible all I have done since my Dec 2009 diagnosis! Stupid me...) Jim's caregivers and our adult kids are so awesome with all the help they give us. They help with Jim's issues and all the household chores. Couldn't do it without them. I feel so bad how much I rely on our kids, now for driving, chores, counseling the counselor, chores and more chores... but they are happy to help around their work schedules. They had an incredible life growing up, and they are happy to help us now, as the roles are reversed. Never thought it would be like this "so soon". I was supposed to need help in my 80's lol, not 50's and 60's .... 

Sorry, I could rant forever with all my pent up emotions. Never been so frustrated, sad and out of control in all my life. I am not the Julie you all once knew...

Ok, need to make a list of my next myeloma medication options to bring to my Dr. I will try to rein in my emotions, so I don't lose it with her...

Thanks for reading and caring and commenting. I will write this blog until I cannot. Have even been thinking what my "last" blog post might say... 

xoxo Julie 

Hate You Myeloma

8.20.20 

8.21.20

Hello Friends, 

Been too sick to post and don't have much energy today for the stories I wanted to tell you. My "rescue dose" 2mg of Dex steroids I took before bed last night still gives me a bit of energy and lowers my fever and inflammation and pain, so I can do a mini post. 

Been 3 weeks with non stop fever. Began in the 99's and continued to escalate to a high of 102.9

Yes, finally went to Urgent Care last Friday Aug 14. One good thing that came out of that was a NEGATIVE COVID TEST. All other labs looooooooow as usual, and especially Electrolytes since I just haven't been motivated to eat or drink much, but I do force myself. Medical Team was great, but all my labs scare everyone outside Oncology, and they "panic" and tell me to immediately get to ER!  Call and Ambulance now!. Go to your Local ER now!. Go to a Kaiser ER now!. Get to ER now!. Ummmm, NOOOO, I'm not going to die alone, I'm not going to die in a hospital. Stupid Corona Virus. But I understand the Visitor Policy complicating things for patients like me. And with my Alz husband, I can't just leave. His decline is horrific. Mostly forgotten how to walk, eat, drink, etc...

They did a chest Xray and there are vocabulary words on here that I have never heard of...

You'll have to Google the terminology, unless you're a medical professional or know a lot of human anatomy and physiology...

I can't even describe the daily, nightly suffering. Yes, meds help, but you all know what a fever does to you. Fortunately on Monday chemo days, I still take the 40mg of Dex, so my temp is Normal that day and into Tues... Then comes the crash on Wed. This has been going on since the beginning of this month. I don't have any other symptoms. No cough, no sore throat, no nasal issues. Nothing but an awful fever dragging me down, making me feel awful 24 7. The Clavicle pain has lessened, but still there on the Right side. My Radiologist wants to Radiate that side, but I can't take another frkn thing right now. Yes, I am still doing the chemo triplet of  40mg Dex steroids, Velcade shot and 10mg Revlimid for 21 days. I Cannot Not Do chemo, as not doing anything will allow myeloma to win, which I think is happening anyway, but at least I am putting some poison in the fight still... Will do myeloma status labs in a week or so for my end of the month Dr appt. Not looking forward to those, as I suspect my IGA will be out to the moon. You wonder why I don't pursue this with my Drs,.... if I have a fever, I can't do chemo, and like I said above, No chemo, Myeloma wins....

I really don't have any good news, or positive news. I've been battling this monster officially for 10.9 years now, and probably many years prior. My bones are invaded and being eaten away. I hurt inside and out. I have no life, my life is stolen. I can't do anything I used to do, and I mean basic things like chores around the house, animal chores, showering is a drama, etc. It hurts to do anything, or I am too weak and dizzy to do anything. Can't do things outside or with my animals. Eating is forced, everything is forced. I am sad and angry. This was not supposed to be my life. It is pitiful and tragic to see Jim decline in such an awful way too. This once strong, capable of everything for everyone guy, is basically a blob now. I won't give the ugly details. Just read end stage Alzheimers. 

Thanks for reading,... and I hope your life is waaaaaaaaaaaay better than mine....