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

Monday, March 1, 2021

2 New Options: Blenrep and Melflufen

 3.1.21

Hello Friends, 

All's the same... extreme fatigue and exhaustion thank you to very very very low CBCs, Platelets, Hemo, Reds, Whites, etc. I am so sick of feeling sick all the time. So tired of being tired all the time. Over the years, I had all kinds of flu and colds just like everyone else, but recovered, and life went on. With Myeloma side effects, I can barely move and do anything now. Everything is challenge. Not a ton of pain, but it's there. But the weakness, fear of falling, I can barely get in and out of bed, the car, chairs, etc, and the inability to do much of anything is startling for me. It's just all totally disabling and I can't wrap my head around it. Never watched so much TV in my whole like. Never had to "force" myself to eat and drink. I am sick of hydrating. Sick of trying to eat the "right" things. I could live on the pre-boxed protein drinks, if that was healthy. But it's not. A while ago I weighed 131 when doing the High Dose Dex Steroids. Now I'm 121. That's fine with me, but I also know "what it means"...

So the regimen of Darzalex, Pomalyst, Velcade, Dex Steroids is a big joke to Myeloma. I'm "refractory" to all of them most likely. Oh well. I'm tired of blood tests, and needles sticking me. Never bothered me before, but now my skin is so sensitive, I tense and bristle up when the needle goes in. Never had this issue before. And the nose bleeds. Weird clots come out when I blow my nose. Oh well.... And the Extramedullary Lung and Abdominal Masses... who knows how big they are now. I care, don't care anymore. I get mad at myself when I mumble and bumble around the house and say I don't care anymore, I'm done, I can't take this anymore, and just want to feel what it's like with NO meds in me. But truth is, I do care. I care a lot. I want to live. But it's just so hard now. All I do is whatever I have to do to treat Myeloma and then deal with the side effects. Nothing tastes good. I try to eat, but it's not fun, nor tastes good any more. I try to drink, but I throw more tea and juices away, then I drink. And I used to love my herb teas and Cranberry sparking water mix. Can't stand plain water any more. Force myself... I haven't had coffee in weeks. Doesn't tase good at all anymore. I watch the Food channels and laugh at all the incredible concoctions. Onions, Garlic, Fried, Jalapenos, Carnival Burgers to Elegant dishes. I'll never be able to eat any of that any more... LOL, not that I ate it before, but for sure now, I will never be able to. 

Fun Show!


Will never celebrate with Jim and others again
He loved a good steak, I was never a regular meat eater
But we had a lot fun times at lovely restaurants... 

So Steroids and Darzalex today. The Benadryl is still affecting me, which is ok, cuz feeling mellow is ok with me. Super tired and weak, but I am always careful, but I do worry about the Little Doggies getting under my feet and tripping me... I am very careful, don't worry about that! Use a cane most all the time now. They're Jim's canes. So funny. I had bought him several with very nice decorative patterns on them, NOT knowing I would eventually be the one using them LOL.

Tomorrow, Velcade and possible Platelet transfusion. Dr wants me to go for blood tests after injection. Don't feel like driving to another facility. Don't feel like doing anything. Would love to stop everything and see what happens, then if not good LOL, go back on something... ha ha...

Did my Ophthmology appt last week, and my eyes are good, and ready to be destroyed by Blenrep. 

Ironically a blog follower mentioned "melphalan flufenamide (Pepaxto; melflufen)"  .  I had read about it previously too. It was just approved yesterday, Feb 28,2021! The most amazing thing I read, and couldn't believe my eyes, was good results with EXTRAMEDULLARY Myeloma:

 "Notably, the combination also showed activity in a subset of patients who had extramedullary disease (EMD; 41%). "
Thank goodness for the BRAVE people that do these Trials!!!


Well isn't this an amazing twist... will ask my Dr about Blenrep vs Melflufen!!

And in my recent Labs, Steroids have brought my A1C to a little over 6. But that could also be that I am not eating well, and eat more bread type things now to settle my stomach. I'm too Neutropenic for fresh fruits and veggies. But honestly, I eat whatever I want. Does it REALLY matter at this point... care, don't care... but I really do care... I think I'll try some Hot Chocolate now... sugar, sugar... who cares... 

LOL hadn't read this before just finding it to post!
I eat almost all the banished foods here LOL


Thanks for reading, caring and following my story. Sorry for being so sad and pesimistic now, compared to the upbeat, joking, positive, it will all be ok Julie, through out most of this blog since 2010...


Sunday, February 21, 2021

Time for Real Acceptance

 2.21.21

Hello Friends and Followers- 

Word of the day, week, month for me: Acceptance.
 
Acceptance can be a simple word and concept, or very powerful. 

Acceptance...

I've spewed this word out all my life. I've talked about Acceptance of ourselves, our families, our situations, our circumstances, our history, our plans, our interruptions, other's Acceptance of us, and us of them. But have I ever really, really Accepted Myeloma?

No.

Thought I did, but I really didn't on a deep to the core,... This Is Actually Happening To Me, level.

Sadly, it took this awful Extramedullary ABDOMINAL Mass (and also knowing about the other masses, and painful fractures) to wake me up and make me fully realize I'm really, really "sick". Yes, I have incurable cancer. I've "beat the odds" for over 11 years. Everything happening and growing INSIDE my body is out of My control, no matter what we do to treat it. Myeloma is Incurable, and just bounces back. Just a matter of time for each individual. (There is NO cure, and eventually one runs the course of all available FDA approved treatments, and then many go on to clinical trials.) I often say to people that because Myeloma is an "invisible killer", unlike other cancers that are External and can be "seen", Myeloma is more difficult to Accept and understand, because it cannot be seen. 

For so many years, I was able to take pill-form and IV-form chemo, along with high dose Steroids, and fake function a few days a week. I'd always "fix" myself up externally, just because that's me and it makes me feel better to look Ok. But now after over 11years, this vicious cancer has completely taken over my body, moved outside the bone marrow, where Myeloma begins and lives, and has forced me to ACCEPT my circumstances. Yes, forced. I don't have the option of "pretending" I'm ok, just because I look ok and Steroids fake me out several days a week. Truth is now, I don't look well, and this softball+ size tumor has changed my physical appearance so much, I can't stand to look at myself. 

Myeloma and my compromised immune system, has also sucked the life out of me for so many years. Most never understood it. Most around me got tired hearing of my status, treatments, labs, appts, results, side effects, etc, and why I wasn't able to go places, do things, the way I used to. I call it "Cancer Fatigue". Sometimes I just didn't talk about my circumstances unless people asked, or they said something dumb, like "Julie, you look so good, when did you stop chemo? When were you cured?" 

So how long has Myeloma been mutating inside me and growing these awful Extramedullary tumors? I'll have to go back to all my CT, MRI, PET Scans, etc, and see when they were first seen. They haven't always been there, and weren't visible on scans when growing years ago. When I first read the reports, not much sunk in, as the medical terminology is overwhelming. I just wish the scans would show in color and be more clear to non medical people. How the Radiology teams can read these as they do, is truly amazing. I do recall, as I have mentioned this many times, everything was so complicated by my husband Jim's Alz situation and decline. I paid more attention to him then me. I remember my Dr mentioning in Jan 2020, how big the masses were, and me studpidly telling her we'd wait on dealing with my situation because of Jim's status... yes, stupid Julie. I recall her understanding, but letting me know, not the best decision... Yes, stupid Julie... I just hadn't Accepted the seriousness of my situation, and at this time, these masses weren't causing me discomfort, and I had a few "good days" weekly. But if this awful Extramedullary Mass was growing on the outside of my body and could be seen, or I could actually feel it, I know my response would havve been drastically different.

See I was very fortunate in the beginning of my Myeloma journey, that I didn't have a lot of the classic bone pain, random pain, broken bones, tumors that could be seen, etc, like most diagnosed with Myeloma have. I had many fractures and pain often, but nothing that stopped my life or hospitalized me. I just thought I had pulled muscles and nerves due to steroids and chemo weakening my body, or that the fractures were pinching something. Back in the day, Chemo and Steroids allowed me these few good days per week after my SCT too. All the while these evil cells were growing and mutating INVISIBLY inside of me. 

So what's my point here, other than ranting (and I thank those that care to read my rants), my point is that I really have ACCEPTED my plight, I think about death and dying daily. I am angry and frustrated my life was cut so short so soon, (My dad is 94, doing great, and 100% independent. My mother passed at 88 from evil Alzheimers Feb 2010.) I am angry and frustrated that I am so limited and exhausted 24 7, meanwhile my body has all the energy in the world to grow Myeloma cells and take me down. 

I am angry and frustrated that most all that I planned and hoped for in my "golden years" has been stolen from me. And it's right in front of my face 24 7. I am sad I see all this wonderful food I used to love to prepare, share and eat, that I cannot now, because this Abdominal "Alien" is taking up so much space, I have little room to injest anything. And if I do, I feel incredibly bloated, short of breath, and have sharp abdominal pains, when my "Alien" gets angry it's being pushed around. I am angry and frustrated I have beautiful tangerines and lemons on our fruit trees, and cannot enjoy them. I am angry and frustrated that I have zero energy in general, but especially to walk outside in the sun, do little chores as Jim and I used to, pet and groom my horses, pet and play with the doggies and I am so very angry and frustrated that I cannot go anywhere or do anything, as I am so weak, fatigued, exhausted, and extremely Immune Compromised (WBC is .9 (point nine!), and feel like the "Pillsbury Dough Boy-Girl". 



I am so sad, angry and frustrated that I cannot join friends and family on adventures as I used to or planned to do. I see and hear what "Normal" people are doing and I cry. Go with them you say. I can't, I say. You say, never say can't. I say no, literally I can't. I have to be near a (clean) bathroom all the time, I feel gross and sick and bloated and extremely exhausted, and even if someone .... and I can't believe I am saying this... even with someone pushing me in wheelchair, it would Not be enjoyable. I hurt, I'm exhaused, I'm nauseated, I'm beat up, I'm horribly bloated, it hurts to do most anything unless I am on steroids, and I am too immune compromised to be in public places...  so for all these reasons, and for how sad it would make me feel, I honestly cannot do much of anything except go to medical appts. I would be forcing everything, and what's the point of that. I am sick with a horribly desctructive cancer and I Accept it... I cannot change it. It is what it is. I accept. I live moment by moment looking at all Jim and I created, all the critters, beautiful landscaping, things in our house, and I am just so sad it's being stolen from me too early.

So where does all this bring me.  I have accepted my clock is ticking much faster than I anticipated. I don't have the life choices I anticipated. I will "go" with missing out on so much, and that makes me angry and sad, but I am Accepting it more and more each day, because I cannot change it. I rant and cry around the house, then tell myself to just Shut Up, it doesn't matter any matter anymore. Just shut up Julie. You've Accepted your plight, so just shut up. 


Beta2
I'm 9x higher than the Normal range of 1.0 - 1.8


LOL...
IGA too High to even measure

>  =  beyond what the testing machine can register 




PS- yes I will speak to my Dr about Blenrep at my Tues appt. Pick your poison. Black box Rx warning about serious Eye issues... but according to many, great Myeloma results. Then there's Clinical Trials that everyone is pushing me to do. Little control of what they put in you, and what they are doing with you... I like being part of a Team, not being told what to do with little information or options... maybe I am wrong about clinical trials. Will have to ask my Dr more and call COH... an then there's the drive down there... time buy a lil airplane or helicopter lol

And now I will drag myself to Kaiser for weekly Labs, and hopefully be able to sit outside in the sun when I return.

Thank you for reading and caring as you do :))





Saturday, February 13, 2021

Someone Get Me Out of this Nightmare... Daymare... Make That ... Cancermare...

 2.13.21 Seems like a great date to write a post lol. 13th. Yep that's my life... Only thing I like about my Title is the word "Mare" in it, as horse mare :))



Anyway, hello from the "living dead", with one, maybe two feet in the grave or in the "ash dust"... not sure some days. Honestly friends, I truly did not have any idea what Myeloma could do. I knew it was a serious cancer WITHOUT A CURE, but I seriously did not know the viciousness, pain, weakness, mutating aspect of Myeloma. No offence to those with Myeloma, but there are so many versions of it, I really did not understand what my first Dr meant, when she told me I was "High Risk", back in Dec 2009, as I didn't have any of "typical "chromosonal mutations" that I had heard of with people primarily with IGG and Light Chain types, non-secretory, etc. I felt I'd just keep drinking chemo for the rest of my life with little drama. and I wouldn't have all the "problems" other Myeloma patients had... hahahahahahaaaaaaaaaaaa on me....

https://www.myeloma.org/types-of-myeloma

https://www.cityofhope.org

https://themmrf.org/multiple-myeloma/treatment-options/standard-treatments/

Now I understand the term "Multiple Myeloma", as it morphs and mutates in Multiple ways with me, harms Multiple areas, (well most all), has Multiple types, causes Multiple types of Bone and Body damage, and causes Multiple lesions, tumors, multiple areas of bone destruction, etc etc., and of course in my case, changes in Multiple ways to one of the worst possible versions... Extramedulary.  Hate you Myeloma, and I apologize for not reconizing your Strength, Intellegence, Ability to Mutate even while being slammed with powerful chemicals. How you now laugh at my treatments, that previously mocked you and supressed you. how much I ignored and denied... Ok, you win Myeloma, but I'm still going to fight until the pain overcomes me, or you take my most important abilities aways (which to a degree, you alread have),,,

PLEASE READ THIS LITTLE "DISCLAIMER": 
If you are NOT COMFORTABLE thinking or talking about "death", please stop here,.....

Ok, so at my most recent Dr appt on Tues, prior to chemo, I asked my Dr directly these questions, as I had previously asked my SCT Dr at COH many years ago with Jim there with me:
 
1- "If I was to stop ALL treatments, how much time would I have?" She shook her head, as I know I  affected her with this question, and let her know I am NOT holding her to anything she says, but I just want her "guesstimates"... she said.... maybe 3, 4 months... That's stopping ALL treatments.

2- I then asked her how much time I might have if I stopped all treatments except Dex steroids, and she said somewhere between 3-6 months. 
Now please don't get all upset everyone and don't try to make me feel better that Drs can't "predict" anything, I've always been a realist and pragmatist, and knew from Dec 30, 2009 I was living on "borrowed time", but I just didn't have the physical symptoms to make it REAL as I do now. And what do I expect, surviving 11 years, that's a lot of wear and tear on the body in normal life, not to mention treating a vicious cancer with powerful chemicals... Yes, Pain and Physical symptoms have been my "reality checks", and they didn't rear their ugliness until maybe half way thru my battle. This may be very different for others, but pain, disabilities, and physical restrictions have been my "wake up" and reality calls.

=============================
Ok, "safe" to read now... 

1- We then chatted about my medication options, and I opted (as pisses everyone off), to remain as we are, one more month on Darzalex, Velcade, Pomalyst, Dex Steroids, and see what happens, as my IGA did go down about 500 points. My Dr feels we are "wasting time", and wants to get started immediately on Blenrep or COH clinical trials such as the BITE trial... which I do agree with her, but... Do I opt to take the chance of serious eye problems with Blenrep, or go on a trial that could be any Random dang thing, or dose, etc... My apologies to all my Myeloma friends out there everywhere brave enough to do this already, and I've have know many and plenty that do and have, and I thank all those participating in Trials that pave the FDA "safe path" for those like me...  
Ok I will in March, if this current regimen doesn't work...


2- My WBCs, Platelets, Reds, Whites, etc are super super low, so she scheduled me for a blood transfusion for Friday, which I did. 2 bags. No problems with Transfusions, as I whinned about before. See, I am just not "BRAVE" like many of you think I am, but I deeply thank you for the vote of confidence :))

3- My Dr also gave me a RX for Zarxio Neupogen again, so I've been "shooting up" daily with that. So far, with the blood transfusions and WBC building Zarxio, I feel a bit better, but have all consuming Fatigue, and I have been using a cane here and there the last few months. Yesterday, Friday was the first time they wheeled me out of the chemo lab in a wheelchair to my car (I should proabably stop driving soon...). 
Some things I am able to just "stuff" right back down, but I cried when the Nurses said Hello on Tuesday and Friday, and I cry when I'm driving, and I cry when I get up, and I cry when I go to bed, and cry through out the day... Most of my "triggers" are visual, so I pull it all together as I always have and always do, because what's the point. No one's here (at that time, or it's not the "right time" to share my pain), and I don't want to drag everyone down with me. Jim is here and I talk to him all the time, We feel him in so many ways, and the kids have experienced crazy signs too, as I did with almost "dying" in an accident driving home from chemo a few weeks, month ago... but that's another story... I, we had a great life, and I count my blessings daily, but I feel so cheated in so many ways... 


Here's my bag 1 or 2 of blood
Thank you Amazing Donors!!










And that's my "partial" story... so much to say, so much to tell, but I think I'll leave it here, as hopefully most of you will stumble on this after Valentine's Day, as I certainly don't want to affect your happy hearts day...
Hoping you're having a wonderful weekend with those you love and cherish. Time and illness stands still for no one. No matter who you are, what you have, what you've planned, what you think you'll be doing years from now... no guarantees in life. Jim and I were the ultimate planners, and look what happened to us... we can Try to be in Control, but Ha! We're not. I used to tell my students all the time, "You Can't Control the Things You Can't Control"... so know it, understand it, analyze it, and move forward, as you really have no other choice, right... 

Thank you for reading and caring as you do... time to go shoot up Zarxio:)) 
And yes, I still have my awful "Abdominal Alien Mass", but I believe Radiation shrunk it a bit, or actually my (now) rare ability to eat and drink may be afftecting my "myeloma alien pregnancy"...



Jim loved this Movie and Song















Wednesday, February 10, 2021

News Coming 2.11.21

Hi Friends-

Dr appt today, and crazy test results... more to come on  2.11.21


Tim Magraw

"Live Like You Were Dying:...



Another take on I Will survive 


Gloria Gaynor and the Alien

Just like me and the Alien growing in my tummy :((

 

 


Monday, February 1, 2021

Just Eat Me Up Alive Myeloma

2.1.21

Hello February! I made it another month. 2.1.21 pretty cool date right. 

So here I sit at downtown Kaiser waiting for Radiation #4. It's around 10:40am and my appt was for 8am. Lol 8am, who are they kidding. Guess where I was at 8am! I told the staff that on Friday, that basically No Way could I make it here at 8am because of all my GI crash side effects and I sure was right about that... Fortunately, my crash days are "predictable" so I know when to Not Take Chances lol! Last week I even put a little trash can in my car "just in case"... LOL

Have had a lot of acid reflux lately, no matter what I eat, which isn't much now, thank you Abdominal Alien Mass! Probably from the Mass pushing up on all the vital organs? There are so many "spicey" type foods that mentally appeal to me, but I don't do those anymore. One day I will again, right. My lovely Crash is the "Cleanse" everyone pays for lol! Honestly, I am just grateful it's Lower GI, not Upper GI, as that I just couldn't handle that... Thankfully, my body is still functioning in many "normal" ways thank goodness, despite Myeloma eating me up alive. 

I'm just soooooo beat up, unless I'm on steroids. I took 20mg today at 5:45am and then spent the rest of the morning you know where... Finally took 2 Imodium pills as back up insurance for freeway driving. How do people eat, drink and commute? I hardly ate yesterday, knowing what I had to do to get here early lol... Same will be for tomorrow, Radiation #5. I do feel the Alien has gone down a tiny bit,, but that could be related to hardly eating.  So many things sound and look good,, especially since I watch more TV now than I ever did in my entire life! The food sets on the Hallmark channel and all the series and movies, Omg yummmmm... and they "waste" so much food on these sets!... Anyway... done with today's Radiation, back on the freeway with Uber Scott and headed now for status Labs for chemo tomorrow. 

So many say, Don't Let Cancer Be Your Life... well heck, how can it not be? My whole life for the last 11 years had to be focused on Treatment, which then Triggered pretty challenging Side Effects! "Oh, but Julie, you look so good, you sound so good, you seem so strong".. Guess I'm just way too good of an "actress" on Steroids lol... But this Fatigue is just soooo disabling and I don't post "awful" pictures of myself, so that's most likely why "everyone" thinks I'm so ok. If I was to post my Crash day pics, oh boy, would everyone "know" I am a Cancer Patient for sure. I was more "functional" during so many previous years because my Reds and Platelets and Hemo were ok. Had NO Idea how those levels would affect my functionality. Seriously incredible how our Immune System and blood levels regulate so much of how we are. Guess I should have taken more A&P, Biology, Chemistry, etc classes in college. Ok, just push forward Julie and maybe some sort of "magic" will happen this year for me...

And now... your thoughts on this whacky lab result... What the Heck IGA? Does this mean they can't even measure the level anymore becuase it's so high? But hoping, just maybe, it was a processing error? Never had the " > " sign before!


So getting this blood transfusion was so crazy and humbling! After Radiation last week, I then went to another Kaiser clinic for the blood transfusion. Did Labs there, and then waited. And waited. And waited. Turns out because of the amount of time I've had Myeloma, and the amount of Treatments I have had, and my 2010 Stem Cell Transplant, my blood has Mutated so much, they had to process the Donation in a specific way. And get this, it was FLOWN from Nor Cal to So Cal just for me. Not Kidding. And there was one other cancer patient in the clinic with me with a similar issue. So finally around 3:30pm I was able to receive this Donation, and staff even stayed late to take care of me for the entire infusion. I am just so grateful and overwhelmed with the Wonderful Care I receive at Kaiser. Just Amazing and Fabulous Caring staff!!!



Can you find my Abdominal "Alien" Mass? Look for the Softball size circle with the measurement:



Sure wish all this was color coded. But you can see where the circle is with the measurement. No wonder I feel 6 months preggo. Ugh, How did this happen? How did I let this happen. I believe this monster was noticed on a Scan in 2019 right as Jim was beginning to go down hill, so I brushed it off, and said I would deal with it later. Did not really comprehend what it was, what was happening, how serious it was, and with the Lung Mass too. And stupid, naive me, I just thought it would "just go away", that the chemos I was on would disentigrate it. Extramedullary! OMG, I just kept thinking at the time, "this serious stuff can't happen to me"... lol blonde lol...

Still on Dex steroids, Darzalex, Pomalyst, Velcade. I'm probably Refractory to all of them, but we'll see. I will brave up and mix in one, some, more, others, I haven't done yet. 
ANY RECOMMENDATIONS my Myeloma Buddies??

Thanks for reading and caring as you do, and I hope you have a great February, without any Drama!

Remember this classic!
"I Will Survive"
Thank you Gloria!
I am trying so hard to Survive...


Thursday, January 28, 2021

Chemo, Radiation, Labs, Radiation, Myeloma Raging

1.28.21

So much going on...

Dr appts under the influence of  high dose Steroids and 50mg IV Benadryl. So funny. My mouth and brain are outside my body talking, and I make little sense. I have to learn to just chill, sleep and let the conversations go... Love the extremities of the meds. Never did drugs, alcohol before, so all this is a fun, crazy ride for me. If only I wasn't being killed inside by Myeloma.... Thank goodness I tolerate so much, so well. Don't know why, but I do. Maybe because all my organs were in good shape when I was Dx Dec 2009? Except why are my Platelets now crashing. They cooperated for years? Is it because Myeloma has munched all it can inside my Bone Marrow, and things just don't do what they're suppose to do now? Will have to read up on that. Dr wants to do a Bone Marrow Biopsy soon. I vigorously shook my head NO, not now!!!... just too much to handle. I haven't even had the time to appropriately mourn my dear Jim, even tho I talk to him in house all the time. So much of my life right now, is JUST ONE FOOT IN FRONT OF THE OTHER, TRYING NOT TO FEEL, NOT THINK, NOT PROCESS... JUST DO WHAT WILL SAVE MY LIFE... 

So I'm on Darzalex IV, Velcade shots, Pomalyst pills, Steroids, and now, Zarxio Neupogen for 5 days, Acyclovir, Vitamins, antacids, tums, Zofran for the Abdominal Alien Radiation for 5 days, more if necessary...  and more things I'm not remembering now, LOL... Would love to have coffee for my early drives to Radiation, but terrified of GI issues on the Freeways. How do "normal people" communte long distances, without a pottie in the car. Well I have to remember I AM NOT NORMAL ANYMORE, AND MY SYSTEM TOTALLY CHANGED WITH THE STEM CELL TRANSPLANT AND ALL THE CHEMO MEDS FOR 11 YEARS. So when "biology" needs to happen... oh boy, I better be near my bathroom or another CLEAN ONE. I just hate gross public bathrooms, and if I pulled off the freeway, I'd never make to the bathroom in a restaurant or hotel, or wherever. I do have "funny stories" from back in the day of early treatments, winding up in a Porta Pottie, etc.. I'm bringing a little trash can in my car the next few days LOL. 

I woke up around 3:30am in anticiaption of my crazy day and days ahead,,,, then decided at 4am to just  wake up, take the Steroids, but then I couldn't get back to sleep (set my alarm for 6am) to begin the "cleanse" process before I get on the freeway. HOW DO ALL MY MYELOMA PATIENT FRIENDS DO THIS? OR DO YOU NOT HAVE HAVE "LOWER GI" ISSUES LIKE I DO???  Monday my Radiation appt is at 8am... might as well never go to sleep, or I'll just be even more "Anorexic" than I currently am, so I don't have to worry about Freeway Biology Drama!!!!. It's a losing battle for me. If I eat, then GI drama. If I don't eat, Myeloma wins. 



Here's some screen shots for you, and then off to the Freeways for Radition this morning and then Blood Transfusion later... Cancer, at least for me, is a Full Time Job... If only I could get back to who I was with out all the complications of Tumors, Masses, Extramedullary, etc. How about "just chemo" you smart, mutating, angry, take over my body and life Myeloma? How about giving me just a little a break so I do little things around here with the Critters, the House, my Family and Friends? How about giving me my belly back Myeloma, so I can eat and not feel 6 months preggo. Oh, just shut up Julie, you're being eaten alive by Myeloma, and Myeloma's just laughing at it's success in this Host....  

IGA
















And so, I make another day! I used to think of all this as a "challenge" and I'm gonna beat Myeloma. Now, I'm tired. I'm exhausted. I'm beat up. I'm not brave anymore, altho everyone I meet is amazed I've lasted 11 years with Myeloma, Drs, Nurses, Patients, etc... I just want a bit of my life back. No pain, No Masses, No Fractures, No drama... Myeloma, you are very very smart, and I underestimated you...

Thanks for reading and caring as you do... more to come... So many "adventures" in Julie's Myelomaland... 



Thursday, January 21, 2021

Something Amazing Happened Today :))

 1.21.21

Thank you Zarxio/Neupogen and of course 3 days of Dex Steroids... something Totally Amazing Happened Today 1.21.21 :))



Have CT scan tomorrow, Friday 1.22.21, then phone-video appt with Radiology Oncologist on Monday 1.25.21 to plan Radiation Annihilation of my Abdominal "Alien" Mass, then Chemo and Dr appt Tues 1.26.21... so I will have a lot to share next week!!!

But until I do all that, here's a hint of the Amazing 1.21.21 story I made it to!!






Beautiful day, beautiful couple. Thank you Universe for giving me life, energy, and medication to be able to do this :)) 


Monday, January 11, 2021

The Body Sabotage Continues Non Stop, Go Away Myeloma

 1.11.21

Hello Friends and Loyal Followers. 

Here we go with posting on the 1's as I enter my 11th yes, Eleventh Year of Myeloma survival.

I have to make this short, as I have reacurring bloody nose episodes and don't want to bleed out on my computer. I had written some deep thoughts yesterday to post, but never finished it and don't have energy to finish it now. Maybe I will later... 

I'll add screenshots of my results as they come in, so be sure to check back :)) as well as updating you on my new 2021 treatment plans. 

So quickly, here are the Lab results that have come in for my appt with the Myeloma Specialist on Tuesday (tomorrow). I was surprised how high (as in "bad" high) they were. Haven't had results as high as this, on these particular tests:


Beta2

WOW... 10.8 for Beta2?
Wonder if that's a world record yet?


Total Protein

And 12 for Total Protein, 
Never had anything like that before 
and actually never paid much attention to this value
as it was always in the "normal" range. 


                                                          IGA

OMG up up and away we go :((
Never been this High before...


M Protein below


Yikes!
It's never been this High :((


I'm so sad Myeloma is so intent on doing me in. I have so much life I want to live... we'll see how the new combo of Ninlaro, Darzalez, Dex does. Last week was my first with these 3.  Have had Darza previously with great success, and Ninlaro is in the Velcade family, and I did great with Velcade for quite some time too... and Dex steroids. Well I'm ditching the High Dose 40mg for 4 days on, as it's bloated me up along with my Extramedullary Abdominal tumor mass Alien. I look preggo, my belly is so bloated with my Alien. Helllllo Nooooo to that continuing! I barely eat now, as I can't stand the bloated, full feeling. The idea of food still appeals to me, and I do eat tiny bits at a time, but all the fun things I prepared before, ugh, just can't eat now without feeling like a preggo BroodMare. 

I have frequent bloody nose episodes. Like blood pouring out like a faucet. Today I thought I had plugged it up, took the tissue out of my R side nose, and SPLAT, lovely red myeloma blood all over the floor. This is due to the lack of Platelets now. I didn't post those results, but my CBC's are not happy, to say the least... Never had such bad labs :((

Time to build up those lovely Platelets and supportive blood.
Myeloma, you're just too smart and know just how to sabotage me.

So when my IGA and M Protein status comes in, I will screenshot that for you.
I expect some crazy outrageous number, that I will probably then submit to Guiness Book of World Records. Yep, and there they are above, super High :((

And please don't be offended,...... but I spoke at length with the Medical Social Worker the other day, and want to get the process going for ELO (End of Life Options). I am in no rush, seriously, NO Rush, just want to have OPTIONS, in case I don't have any more options, in case my situation becomes so dire, so unbarable I cannot breathe, move, function, or I can't care of my personal needs, I develop more and new painful fractures all over, or I'm paralyzed from fracture/bone breaks, the tumors have invaded everywhere, I can't eat and enjoy, the pain is overwhelming, and there is absolutely No Hope, Zero Hope, for anything helping me or healing me, and all I can do is lay in a Hospital Bed and "wait" for the end to come... Remember, I went thru all of the drawn out, lingering End of Life experiences with my dear husband Jim, when Alzheimer's completely stole his life. As an Alz, Dementia patient you don't have any options (legally and psychologically). The end is just suffer, suffer, suffer... and for the family to wait, wait, wait, watch, watch, watch, along with Hospice assistance... I would of course make this decision with my Adult children, not all by myself...

If you have NetFlix, there was an episode in "Grace and Frankie", about the ladies's friend who chose this option. She threw a great party, then privately passed. How ironic that I am watching this series, and this episode is there. She had "no more options", so this was her choice of how she wanted to exit the earth. And I emphasize, I would only choose this route, IF THERE WERE NO MORE OPTIONS, AND I'M ONLY SUFFERING BEYOND SUFFERING... I would NOT do this option if my kids did not agree.

And yes, I have decided to do Clinical Trials after I have gone thru all the FDA approved Myeloma treatments. I will do the Phase that has the most options and the researchers know the side effects. Because honestly, as I have mentioned a zillion times, I will not spend my last weeks, days with my head in the toilet... 


I will continue this post as more results or chemo changes come in. So please continue to check back. 

UPDATE- 1.13.21

Chemo regimen change - 
Bye bye Ninlaro pills 
Hello Velcade shots again
Hello again to IV Darzalex
Hello again to Pomalyst pills
And of course Dex Steroid pills

Will do 5 days of Zarxio-Neupogen to raise low WBC
Will do a bag of Platelets, and 
2 bags of Blood

Huge shout out to all the Blood Donors out their saving all our lifes!! Thank you for being so UNselfish 

Thank you for reading and caring as you do. 
You help make my life feel valuable :)) 







Friday, January 1, 2021

Hello to Posting on the 1's - And The New Treatment Plan Revealed!

1.1.2021     January 1, 2021     1.1.21                                                        

Happy Happy 2021 Friends and Loyal Followers! It's Good Bye and Good Riddance to drama filled 2020!

It hit me this morning that with my 11 years of Myeloma Survival, it's time to roll from posts on the 0's representing my 10 years of survival, to now represent my 11 years of survival with posts on the 1's! Yes I've become quite the symbolic numbers girl, and it's fun for me to notate my life in symbolic numbers! Sorry if this confusing to you, but if you've been following my blog for a while, then you get it :))

So for 2021, I'll be posting my crazy life updates on the 1's, 11's, 21's and 31's. Ironically today, is the 1st day of 2021, so here I am, posting my first 11th year of survival post of 2021, and I actually have treatment update news for you! 


After all the medication and fear options I wrote about in my last 2010 post, my Dr called me late in the day yesterday, New Year's Eve 2020, to discuss what my next plan of action will be, starting next week! I had sent her an email with all kinds of chemo combo options, and she was so kind to call me before the office closed for the NYE holiday. Yes, I am now "looking forward" to getting started on a new chemo/immunotherapy option fast, to get this dang Myeloma, and it's tumors, masses, fractures, etc, under control. I've done a lot, and I mean a lot, of thinking, forced myself to brave up, and put my fears aside now. I've have had to psychologically process so much in these last several months of 2020, it's like a movie script. So now it's time to get going on pummeling Myeloma in 2021!

We discussed all the options and combos of treatments that I have done previously, and all the possible options I have not done yet. We also know I need to be on a combination of multiple meds, that target Myeloma from several angles. So here's to hoping I don't have a HORRIBLE REACTION to the New chemos, immunotherapipies, like I did with killer Elotuzumab-Emplicity. 

And the plan is.... Xpovio/Selinexor...
 Nope that was changed as of 1.4.21  LOL

Paired with our fave Dex Steroids, possibly paired with Darzalex, and or Ninlaro, and or Pomalyst, and or all of them together LOL! Xpovio-Selinexor was one of the meds I was wanting to avoid lol, as it causes Upper GI reactions :(( but I have to accept yucky side effects to kill off Myeloma, before it kills me, right. So I've braved up, and I'll start taking this 3 or 4 drug regimen beginning next week. 

 
Pomalyst, been there, done that before, caused very low CBCs
but has good success previously
Nope, that was changed on 1.4.21


Darzalez... Yes!! Began 1.5.21
Been there, done that, and with good success
until the study protocols recommended going from weekly to 
every 2 weeks, then to monthly. My stikn "high risk"Myeloma requires
continual treatment, no matter the recommendation of the clinical trials.



New to me, and in the Velcade class of meds
Yes, this was prescribed to me along with the Darzalex! 
Will take 1st pill after Darza infusion 1.6.21
Read too many possible side effects of Nausea vomiting
so I don't want to do that after my first Darza infusion 1.5.21
and possibly not make Day 2 on 1.6.21

So we will see which 3 or 4 combo of IV infusions and pills my Dr and the Myeloma Specialist from the SCT BMT Kaiser COH Dept recommends.

Here's the link to all the FDA approved Myeloma drugs we discussed:

Here's the link for Xpovio Selinexor:

And ironically, on one of the Selinexor links, there's study-trial of how it may fight Covid 19 also!

I asked her to start me on a lower dose to begin with, so I'm not living in the bathroom 24 7, but we talked about so much, I'm not sure what dose I will be doing with which. When I found the pictures above, I didn't realize there were so many dose options for each medication, so I will contact her and find out what RX she is planning for me. 

Any of you out there that have done the combo of of any of these? If you have, please let me know how it went for you. We will also plan for anti nausea meds too, for sure. I do always keep melt-away Zofran pills in my stockpile, but rarely ever need them. So we'll see what this 3 or 4 combo brings me. The side effects from all are pretty intense, but I've done a multiple drug combo many times before. I just hope to build my Platelets, Hemoglobin, Reds, Whites, etc, back up, so I don't feel so completely Fatigued and physically beat up and worthless all the time. I have had periodic nose bleeds in the last few months, but not as intense as I did before diagnosis in 2009. 

I've also have more pain, pressure and breathing problems in my R side Chest, Lung area, and Abdominal areas. I feel so bloated and full all the time. Guess these masses are taking up a lot of real estate in my body cavity now. Ugh, the Lung Mass feels like something is putting pressure on it, or a rib is puncturing it. Dang, I just can't catch a "break".  LOL Julie, maybe something there did "break"??  And I feel a pain where the Abdominal Mass is, above the Kidney, Liver, Adrenal is. It's a weird "fullness" I've not felt before. Darn it, when I start to feel relief in one area, I get sabotaged by another. I just don't understand all this suffering the Universe and my body is challenging me with :((

Soooooo, Cheers to a better year for all of us, and let's hope the world can move forward to a better situation than 2020 was! Germs, cooties, viruses, bacteria, cancer, illness, etc, is such a powerful and smart saboteur in our lives... 


I may post sooner than the next symbolic 1... as I'm sure I'll have plenty of news to share this month! But for sure, I'll be back on the 11th, 21st, and 31st :)) Thank you for checking in and caring about my journey. Be well, stay well, and most importantly, LIVE YOUR LIFE HAPPILY and GRATEFULLY EVERY DAY!




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
B-12
.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?”)

Infections

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.