Hello Friends and Loyal Readers-
I used to post a silly April Fool's blog, but not much is funny or silly in my life anymore. I'd say something about being "Cured", and I don't have to do chemo or treatments anymore, etc. hahahaha what a joke on me! So no Jokes today, here's the real life Update:
First of all, thank you so very much for all your loving, caring and encouraging comments. You do really very much "matter" to me, and what you write and comment, I appreciate you being out there and connecting with me, very very much!
Happy Spring, Happy Easter 2021
So for as long as Myeloma has been affecting my life, I was very very fortunate that I did not experience ALL the Myeloma symptoms ALL the time, nor was I completely aware of all the individual side effects of all my CBCs, bone damage, tumors, fractures, etc. I was aware what meds to take, side effects from them, and I read so much, and I asked so much, but it all still remained so surreal to me, and it always seemed to somewhat resolve itself with time, medication or a chemo change. I was "tortured" in intense incriments, surprised by what my body could do to me, based on the where the attack was. Each symptom was different, each side effect was different, but it wasn't my whole body, all the time thankfully! And again, there always was some sort of resolution eventually, be it GI meds, body pain meds, bone pain meds, fracture pain relieved by Radiation, etc. Hopefully I am not diminishing the depth and extent, and pain of the past 11 years, as it was truly awful. but what I have been going thru since last summer 2020, just gets worse and more inconprehensible.
At this time, my IGA Immunoglobulin labs are sooooooooooooooooooo HIGH the testing machine cannot even measure it. Normal is between 70-400 and shows at > yes, a greater than sign > .... now stuck at > 5933.
Ha! Maybe this is my Joke on me LOL... > > >
Here's my other labs:
Never had Light Chain issues before.
This is insane!
NEVER HAD PLATELET ISSUES
IN ALL MY YEARS OF MYELOMA!
LOOK AT THE M PROTEIN.
WHEN I WAS DIAGNOSED I WAS
Normal is Zero!
Kid you not friends! If I was to just TELL you this, you may not believe me. What's that saying- Numbers Don't Lie! Again, I never knew how weak the human body can become without both Red and White blood support, not to mention FOOD...
My crazy Abdominal Alien has taken up so much room, I can hardly eat. I am hungry psychologically, and I feel hungry as I write, but it is soooooo uncomfortable to feel full and bloated with basically nothing in my stomach. I made myself 2 eggs earlier and 1 piece of raisin cinnamon bread, and earlier had a protein shake box with some pills, vitimins, and know I should drink more water, but I just can't stand the fullness feeling. Dang you Extramedullary Myeloma. Would just like to insert a needle in you and incinerate you. Wouldn't that be Amazing LOL!
My memory is going too, not enough oxygen in the blood going to the brain LOL.... So if I recall correctly, last week was putting me on "Pallative Care", and I soon received a "light weight" wheelchair (just like Jim), and then this week they sent a home health care Nurse to do my Labs at home (just like Jim).
Yes, those CBC lab results were alarming, so the the Urgent Care, ER Doctor called me in the evening and said what I am told all the time.... " Get to ER now"... your labs are not good, they're dangerous".... I thanked her asked if she had seen my entire myeloma history, and that I was a 11+ year Myeloma survivor, and my Labs are always LOW, Blah Blah Blah..... I nicely told her I won't go to ER, I will die at home, and I'm scheduled for chemo the next day, so they will call me and give me direction as to what infusions, meds are next, and what we'll do about the lousy labs. She was very kind, and I might have been a bit edgy, as I think I had fallen asleep on my old lady recliner chair LOL...
So yes indeed, chemo Nurse calls first thing in the morning, that they wanted me to get the chemo clinic asap for 2 bags of Platelets, before my Velcade injection. Ugh, that was 9:00ish I think. Fortunately I had already taken my split dose of 20mg Dex Steroids, so I was ready to be infused in a few hours. I let my adult kids know, and they were so amazing to plan together and split the ride there and back. I received 2 bags of Platelets no problem. No reaction, thank goodness. Then Velcade shot time. I still have big bruise where I asked my Nurse to find that stikn Abdominal Alien Mass a few weeks ago, and shoot it with the Velcade shot LOL. Well we did the same thing again, and I have 2 bruises now on the right side, and have hopefully pissed of the Mass... eh, who cares at this point right. Have a little fun. Play some "hit that Alien Mass Pin Ball" ... ahahahahhaaaa.
This was bag 2, almost done.
Blood last week
I used to think and say how caring for my hubby Jim was practice for my furture, and some would get upset with me, and say that was a long time away, as Alzheimers is very different than cancer. Well so much of what's happening to me physically, happened to Jim... so ironic, so sad. All the help we gave him, I am now needing. Hard for me get in a car, I use the canes I gave him, I use the wall support bars and floor step ups Scott installed for him, I fear going outside alone, fear of falling inside and out, trouble getting up from the toilet, but Scott's bars are there, I don't have much of an appetite, drink mainly protein shake boxes, even though all food sounds and looks good, can't do many, if any, chores around here, walking from one room to another is a great effort, doing anything is a great effort, can barely get in and out of our bed, unlocking the gates for hay delivery today was an effort, feeding the little doggies is an effort, anything jumping on me hurts and I bleed, writing and talking is an effort, I sorted my laundry a while ago in color piles, and it's still there like that weeks later. I try different foods and they don't taste as I anticipated. I hear from friends wanting to stop by, and mentally it sounds wonderful, but so physically draining. Opening doors and windows feels what you all feel like when working out a Gym lol. So I don't do anything, anymore trying to prevent further pain and drama. I opened a window I had to lean up and into over the kitchen sick, and pulled muscles, nerves, or fractured something. Steroids help suppress the pain, but on non-steroid days I eat Tylenol (don't worry I only do about 2500 a day) then do Flexeril at night. My Drs, Pharmacist, Nurses etc always ask why I don't do the stronger meds, well I don't want to be mentally unsharp. At least I still have brain and analytical self.
AND OMG, I FORGOT TO MENTION THE "BIGGEST" PART OF ALL OF THIS... I STOPPED DARZALEX AND POMALYST AND BEGAN BLENREP LAST WEEK. The infusions are every 3 weeks, (so it must be pretty powerful stuff), continue on Velcade, and 40mg Dex Steroids weekly, which I will never stop, as it helps me in so many ways with pain, and preventing chemo, immunotherapy, side effects. I will never understand why Drs don't prescribe it with all infusions and for all cancer patients suffering with all the awful side effects. Anyway, thankfully I haven't had any of awful and feared side effects. Some Nausea, loss of appetite, etc, but that was there before anyway... But if you "know me", you know I am very OCD about being cautious and careful on chemo days, and for a few days afterwards, so I don't get sick. I did try to eat Wood Ranch with the kids last night (a week after Blenrep), something I haven't allowed myself to do for weeks. I had Broccoli, a very small steak, a little Mac n Cheese, a roll. Have been ok, and ate today too. THANK YOU STEROIDS. I did have several "cleanses", but nothing new with that LOL. And I've been doing the required Eye Drops 2x per day, and so far, so good. We'll see. All I want is the Extramedullary Masses to shrink, so I be physically comfortable again.
Lovely selfie lol
I was really tired and achy,
and also didn't fluff my hair much.
Funny how my Nurses always ask how I am,
and know by how I look. I tease them that one day
I will come in right out of best and scare the heck out of them :)))
Well it's taken me all day sporadically to write this, so I have to quit and sit and watch "Heartland"
until I fall asleep. If I can't ride my own horses, and see beautiful scenery, then I can binge watch it on TV. Never did this before, such a new lifestyle for me. If you are a "horsey" person, you'll enjoy this series a lot. It's not the typical "adult" series, not a lot of scary drama, etc, but situational people issues, beautiful scenery, lots and lots of beautiful horses and ranches. You can watch it with your kids and grandkids, that's how "G" rated it is :)))))
Here are some links to random things and shows I've been watching lately, if i'm not asleep or in the bathroom LOL
Walmart grocery pick up is amazing. My kids pick up for me. I used to eat baby food years ago when I just don't feel like heavy roughage foods. Just ordered a bunch and we'll see how that goes lol.
I'm always looking up medical info all the time, and prescriptions, and just anything that comes into my mind relative to my limited life lol, but hoping to do one day... hello Hawaii, coastal beach hotels, dude ranches, etc, lol
Always on the Myeloma sites, keeping up with research and new FDA approved meds:
And all the other legit clinical, medical sites
I'll probably be editing this for the next week, and commenting on your amazing comments too :))
Thank you everyone for caring as you do!
Hi Julie....I'm thinking about you. I can relate to what you're going through since as you may recall we were both diagnosed in December 2009. Yes, its been a REALLY ROUGH eleven years...for both of us!ReplyDelete
Please contact me any time you like via email if you want...just to trade treatment tips or to just to talk about MM in general!
Hang in there best you can!
Steve in Ohio
Thank you Steve for caring, reading as you do. What treatment are you on now? Whay type of MM are you?. Congrats on your 11+ years. Sounds like you're doing well. I recall your story. Will read again. Your MM is in your bones, not Extramedullary, right. Hope all is good with your and your family, and you can be out and about enjoying!! Julie :))ReplyDelete
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