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

Friday, October 30, 2020

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


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:

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.

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

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

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.

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.

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.

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.

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.

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

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

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. 

Tuesday, October 20, 2020

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


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!

Saturday, October 10, 2020

Can My Life Get Anymore Challenging...


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 :(((((

My Story... How my MM was diagnosed

October/November/December 2009...

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

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

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

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

January - June 2010

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

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

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

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

Chemical Warfare...

January 2010 - May 2010:
My initial chemo regimen:

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

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

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

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

What is multiple myeloma?

What is multiple myeloma?

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

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

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

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

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

Multiple myeloma is characterized by several features, including:

Low blood counts

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

Bone and calcium problems

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


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

Kidney problems

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