Can My Life Get Anymore Challenging...

 10.10.20

Hello Friends, 

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

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

2012 SCT reunion

2 years after my stem cell transplant

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

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

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

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

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

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

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

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

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

Scan machine from Thursday

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

My 8th year myeloma survival Bday

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

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

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

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