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 :))

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...

Darzalex IGA vs IGG

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

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 :((

 

 

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. 

https://myelomabeacon.org/news/2011/11/04/extramedullary-myeloma/

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...