4.8 - Hospital Arrival- during the day, my chemo Nurse arranged Admission (8pm) and Private room for me in advance for my 2 bags of Platelets and 2 bags of Blood :)) Scott had to take me in and out, in a wheelchair. How sad is that. Pallative delivered one here a few weeks ago :((
4.9 - Hospital all night long, came home in the late morning exhausted. No Sleep. Wonderful Nurses, just too much monitoring all the time, but I understand why.
4.9 - Home, Shower, sleep, super weak legs, problems from that, etc. Taking Zarxio to raise WBC.
4.11 - Pallative Home Health Nursing Team came and will come again 4.14 to set me up with more help. Get this! It's the same wonderful team we had for Jim. They cannot believe how fast I've gone down hill, and how Myeloma is totally eating me up alive. I'll arrange for a Remote bed, continue with the Phlebotomist coming here for weekly for labs. as I'm too weak to go anywhere. Will take more steroids for strength and functioning. Cannot believe the weakness I've been experiencing for weeks, months..., especially recently. Never appreciated the power and job of Red Blood cells. Used to always worry so much about my super Low Immune System. Now, I would be happy to completely completely completely Bubblize myself and not worry about my low WBC, if I could strengthen my Reds for mobility and functionality. Getting places in my house is a big challenge and a "catch 22", and scary. But I force myself every morning to get to the bathroom, then walk to the family room from our bedroom so I don't loose muscle and strength. I will not stay in bed all day, besides it's not comfortable, and the little doggies need outside in the morning. I'm also in such a "catch 22" where my stupid Extramedulary Alien Mass won't let me eat much, so I get more weak from not eating much, preventing me from strengthening my legs, arms, body, etc for mobility. So then my mobility and functionality is so super weak, I fear not being able to get off the pottie, or falling. So then I eat and drink less, so I am not challenged by bathroom event all the time. But that's not good either, as I'm so thirsty all the time, and my body needs hydration, or stupid Extramedularlly tumors are sucking up all my hydration... But often when I do eat... a few hours later... oh boy, move out of the way fast... I laugh, cry at my circumstances. Worst case, I will crawl to my bed or couch in our bedroom for stability getting up. How ridiculous is this, for me, used to be "cowgirl Julie. And of course, Nothing really tastes good anymore. I watch the travel cooking channels and dream of eating some of the things I see there. Oh well, next life... Doggies are getting lots of left over treats now lol, cuz I barely eat anything I prepare. It's all so CRAZY! And to think who I used to be :((
LOL Hospital blanket, not Spa robe lol
Lots to tell, be back later. Thanks for caring and reading as you do. This is the best way to let everyone know what's going on with me... xoxo
4.12.21 UPDATE:
- Dr appt on Wed (4.14) for my eye status (side effect from Blenrep and Low Red Cells). Monthly meeting with my regular Dr.
- Since being on Blenrep, I have experienced (a week after infusion), low grade fever for a few days at night. Fortunately that has been gone for over a week. And did I mention previously, I had more 24hrs of nose blood hemorraging. Couldn't believe what few Platelets causes! That finally ended when I took steroids.
- Blurry vision, especially Left eye, but that could be from the low Red Blood too
- Grew another weird Right side soft Hematoma tumor out of no where, fast, between my Collarbone and Neck. Has gone down a lot thankfully!
- Grew some weird black and blue bump, lump on my inside Right side, inside my mouth, cheek. Mostly gone, thankfully!
- Have become more weak and imobilized each day. Pain keeps increasing on my Right side leg. Trying not to eat Tylenol like candy. Main thing that helps always, with EVERYTHING for me is Steroids, as they are such a powerful anti inflamatory. Starting to take one 4mg before bed nightly, or first thing in the morning. I always told my Drs that when the "late stage" comes, Dexamethasone Steroids will be my Go To medication. All the other hard core drugs would probably affect my mental state and psychological processing, which I don't want.... But who knows, maybe I will. I don't need to relax, I don't have "anxiety", I just want to feel good and be painfree, with my mind intact and get back to mobility options.
THANK YOU SO MUCH EVERYONE FOR ALL YOUR CARDS, CALLS, MESSAGES, ETC. Sorry I cannot always answer you always, as I am so beat up physically. Thank you for all your offers of help and assistance. My Adult kids come daily to help with all the outside animal chores. Can't believe all the critters have greater logevity that me and Jim! We used to talk about that... never expected it...
Nala Hanna Jack
Kristin
Scott
So thank you so much for your offers of HELP! At this time, only help I need, is too sporatic for an outsider to help LOL. You'd have to be 24 7 "on call", or I'd need an old fashion bell for help needed, like when I need help getting up from bed, getting up in the bathroom or other areas of the house, then doggies need letting out in the morning, the kitty liter box needs to be cleaned several times a day, as poor Luci has GI issues. Yes, so many of you would say donate the animals somewhere, but No, we made a lifetime commitment to them. Did I mention the Turtle, Tortoise, wild Birdies, Chickens, etc too? And it all used to be so routine and easy for me and Jim...
And all I want now, is to be out there with all of them... What happened? Why? I just don't understand. I am needed here, "not there"...
Thank you Everyone for Caring as YOU do xoxoxoxo
I am grateful you are home where you want to be. But all of this is so very sad. You are so amazingly strong. Let those around you be strong now, and care for you, and you rest, cowgirl. Hugs Hugs, Tears, and Hugs. Jan
ReplyDeleteDear Julie, You are extraordinary. Thank you for being willing to share your experiences and feelings at this difficult juncture of your journey. I can't adequately express how helpful your blog has been for me and I suspect for your many loyal fans and friends. You are a model of honesty; sharing the unvarnished truth in your chronicle is rarer than you might think and so important to all of us myeloma patients no matter where we are in our trek. You seem to have your hands firmly on the reins now, making sure you are guiding this trail ride. I'm glad you are home, in the surroundings that give you joy and seeking the help, care and peace of mind you so deserve. I know you might not like to hear it, but you are truly brave. With hugs and admiration, Aurelie
ReplyDeleteIt is good to be back home, "just click your heels, Dorothy, it's there.." something like that from the Wizard. Oh if it were that easy. I watch for your updates, Julie and pray you along. The why is the big question we never get resolved this side of the clouds, I am convinced. It is good you can at least write here ,,,,if only, if only,,,,think of you a lot and send big hugs and smiles and prayers to warm and wrap you.
ReplyDeleteThank you for sharing, Julie. Wishing with all my heart that things would be, could be different. Sending love and light your way.
ReplyDeleteHi Julie,
ReplyDeleteI signed off as "S" below on an earlier post and that obviously confused you but this is Steve, from Ohio. Yes, as you perhaps recall, we were both dx'd in December 2009. Been some rough years for sure! I'm not quite as bad off as you are as my MM has not been all that aggressive, still, it just ain't no fun having disabling neuropathy in my feet and the Sword of Damocles hanging over my head....I'm sure you know how that feels too. I hope some of these meds help you turn a corner and I'll be thinking of you.
I know you can’t respond but you have touched SO MANY lives through COC , NSP, and your blog. It’s evident that MM is taking over but you have been the conquerer for so long. Many years ago I worked hospice and those experiences and my own faith bears witness that the best is yet to come! God bless- your future is wonderful and you will be surrounded by love ones. 💖 Laurie Tilden
ReplyDeleteI know you can’t respond but you have touched SO MANY lives through COC , NSP, and your blog. It’s evident that MM is taking over but you have been the conquerer for so long. Many years ago I worked hospice and those experiences and my own faith bears witness that the best is yet to come! God bless- your future is wonderful and you will be surrounded by love ones. 💖 Laurie Tilden
ReplyDeleteI know you can’t respond but you have touched SO MANY lives through COC , NSP, and your blog. It’s evident that MM is taking over but you have been the conquerer for so long. Many years ago I worked hospice and those experiences and my own faith bears witness that the best is yet to come! God bless- your future is wonderful and you will be surrounded by love ones. 💖 Laurie Tilden
ReplyDeleteJulie,I cannot believe how strong you are.I do not know
ReplyDeleteLaurie but assume you have been friends f0r along time
with the reference to NSP.I agree GOD BLESS YOU and will
keep you in my prayers.
Ron
Dear Julie, I'm so sorry to hear everything you're going through. What a nightmare. I have two little doggies and two cats of my own and have the same need to outlive them. Such an extra worry on top of everything else. Is the Blenrep having any effect on your myeloma? How long do your doctors want to try it? I don't know if you are going to pursue more treatment, but if so, have you given more thought to Car-T now it's been approved and you could get it outside of a trial. The MMRF had a virtual patient summit on April 10th that included a talk by a patient who had gone through it and had only really experienced fever. The consensus seems that it's a lot better experience than an autologous stem cell transplant. It's a one and done, so you'd get a break from any chemotherapy after it. Maybe it would work for you and buy you more time to sit in the sun with your dogs and all the other animals on your wonderful ranch.
ReplyDeleteRuth
Dearest friend. I usually don't comment on your blog but I always read it. As you know, I comment on facebook. I wanted to let you know that Brian wrote a song for you and sent it to you via facebook messenger. We are all thinking of you and sending you much love. - Betty
ReplyDeleteAlways ready to come down and sit in front of your barn with you. Text me or have Scott or Alissa text me whenever you are up for a tiny outside break. Love you.
ReplyDeleteYou have amazing fortitude in the face of such MM adversity! I pray for a miracle for you, and hope that the doctors can come up with something that eases your pain and suffering, and you can at least enjoy eating a little. I know the animals are difficult for you to manage now, but accept help from whomever offers, and keep your little buddies around you. You need them now! Wish I lived in your neck of the woods. I would be happy to visit and help.......Sending virtual hugs and love.
ReplyDeleteHi there Julie, any updates??
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