4.8 Hospital at night
4.9 Hospital all night long, came home in the mid morning
4.10 Shower, sleep, super weak legs, problems from that, etc
4.11 Pallative Home Health Nursing Team coming soon to set me up with more help
4.8 Hospital at night
4.9 Hospital all night long, came home in the mid morning
4.10 Shower, sleep, super weak legs, problems from that, etc
4.11 Pallative Home Health Nursing Team coming soon to set me up with more help
33 years ago, I was in the Hospital having my daughter Alissa. Ironically today, I'm headed back to the Hospital, this time ER, the place I've been trying to avoid, but can't now, due to needing 2 bags of Plateles, and 2 bags of Blood. My levels are so ridiculously LOW, it's RIDICULOUS!!!! Stupid Myeloma, I just hate you so much!. Myeloma trying to kill me in any way it can, and Covid not allowing us to celebrate together. Would have had a party in the Hospital ER with all the kids while getting the Blood Products. Oh this life is so IRONIC, right!!! What a difference 33 years makes!!!!
My daughter and I were in Hospital together, 33 years ago!
Today, a totally different story. Stupid Myeloma and Covid
So much has gone on in the last 24 hours..., medical communication misunderstandings, etc. I should have had all the complex blood typing yesterday so I could have done the Blood Transfusions at the Chemo Lab today, not E frkn R!!! But then again, the amount of Blood Products I need to keep me alive, take too much time for the Chemo Lab, as they close a 5pm, so I'll be in the ER Hospital all night long. My blood has become so complex because of all the chemo, immunotherapies, 2010 stem cell transplant, etc, it has to be put thru the dishwasher and radiated like non other! Can you believe all of this? I can't! Can you please help me STOP this insane movie. I do not want this to be my life!!!!
So all Bday Celebrations will have to wait, I will hope I will survive all the COOTIES in the Hospital ER, and hope I make it outta there. I told the kids, if it looks like I'm passing off to the next realm, get me the heck outta there, sign all the papers, pull that plug on the Blood and get me home. Or put the IV stand in the car, and let's gooooooo... Party at Visneyland this weekend if that happens. Should I be in a Hospital bed in the backyard, or inside the house, looking out?
Leaving soon and the laughs are that I ate Olive Garden leftovers from last night. Fk u Abdominal Alien Mass, I ate today after coming home from the Blood Lab crazy blood typing labs, and ate. Yes move aside you resident softball size Extramedullary waste of my body space Mass, I had grilled chicken and grilled broccoli, and with my GI luck, I'll probably have to poop when I arrive at ER. Hopefully not before LOL. One time when I had a bag of hydration with my chemo and blood products, and a bottle of my personal water, I stood up from the chemo chair.... and oooppps I "watered the floor" LOL. Scott could not believe it when he picked me up, so from now on he brings a few doggie pee pads for me sit on... ahahahha, or the Nurses gives me some from my chemo chair station. Overreaaction I'd say, my pee is so clean and chemo'd it probably cleansed his seat, ahahahahaha!
OMG, can all this be REAL??? Come join me in ER, let's make it a PARTY... (Steroids talking)
Happy Birthday to Alissa today, Scott on March 25 and wife Ashley on March 4. Thank goodness I made these landmarks!!!
Sorry for my Fk u's, makes Scott crazy as I was the "perfect mom" lol. Alissa just laughs and says, "your're dying Mom, so it's ok, you're allowed to cuss," , she encourages me to cuss, and we laugh together :))
Alissa, "ok Mom, time to go "Party with your Platelets!"
Just wrote my Dr about all the things happening to me. Don't even know if I wrote it all here previously...
4.6.21 ER Dr called last night re my labs taken by home health Nurse at home. Dr was very worried about my levels... GO TO ER she pleaded ....Again I said noooooooooooooooooooooooo, I will not go to ER, I will NOT DIE in ER.
Platelets 15 or 16, Used to be in the 100s. Hemoglobulin super low too, forget level... will look up... Other Labs not good...
Today, 4.7.21 My wonderful "regular" Charge Nurse just called me after reading my emails to my DR, Go to ER NOW she begged. Spot in my EYE not good sign. Bledding inside. Nooooooo, I will not go to ER, I said crying.. Spot probably from new chemo Blenrep. Left side eye blurry all day. Blood Alien floating there, changes colors too, if I look at colors lol, when I cover my Right side eye. Fk you side effects and myeloma trying to Kill me. I'm not ready to die... I have too much I still want to do. I cheated myself out life, when I put so much off...
I'm way too beat up to write much, but I had to update, so you all don't have my other post as what's actually going on...
Later on Thursday night, APRIL 1, I had two CRAZY things happen.
1- I suddenly got a NON STOP bloody nose hemorrage on my Left side. My night was absolutely miserable, and I thought, ok Myeloma, this is IT, you got me, we're done... I won't describe all the bloody details, but let's say I went thru several several boxes of Kleenex all night long, bleeding out and and choking on huge globs and clots in my throat, that I had to spit up, almost aspirating on... I really thought I would Hemorrhage to death. Yes, I know, call my Dr, go to ER... but why, for what? What are they going to do different for me there, that I can't do at home... except give me more bags of Platelets and Blood, but also get Pneumonia or Corona, etc at the same time...
So I suffer at home,...
2- When I woke up, and you won't believe this... I suddenly and I mean suddenly realized I had developed a crazy giant soft Hematoma Extramedually tumor mass on my Right side collarbone area like I developed one my Right side, last summer on Elotuzumab!!! This THING seriously was going to choke me, just like before, last summer/fall. It grew between the Left side collarbone and the neck. What the heck! This Bleeding and Monster Tumor stayed there until I took steroids (Sat 4.3), after another night bleeding out, and choking, I took two 4mg Dex Steroid pills, knowing they are prescribed for both situations like this,... as anti inflamatories...
OMG is Blenrep going to do a similar thing to me as Elotuzumab did, which I mention all the time, thinking it caused the evolution of my Extramedullary Myeloma???
I slept most of the day, tried to eat this evening, Scott came over to do the animal chores and take out bags and bags of bloody kleenexes lol. So how am I doing right now, Weak, tired, overwhelmed, so done with being SICK all the time, ready to try nothing but Steroids, but scared to do that. As I discuss with my adult kids all the time, Am I just existing and prolonging death, or am I living and prolonging life, in hopes that a "miracle might happen, and I can survive this EVIL DEVIL of a cancer. Just had NO idea what would eventually happen to me :((
Feeling stuffed from 2 eggs, 1 avocado, exhausted from the 48 hours of nose hemoraging, but good news, I think the Steroids are helping. We'll see...
Just had to update all of you, as I feel and look awful and seriously cannot believe what is happening to me :((((
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!
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.
Hello Friends and Loyal Followers-
Have so much to say, but zero energy to say it... here's the plan for this week:
3.11.21 (but written on 3.9.21) as I will be crashing bad on 3.11.21...
And I found this the other day...
1- Darzalex IV Monday March 8. I now have a weird reax to IV Benadryl where I get "Restless Leg Syndrome" with the IV Benadryl push. So sad about that, as the Steroid up and the Benadryl mush mouth, tired and relaxed without choice, previous reax, was so "fun"!! Was such an out of body reax with my brain on, but outside my body, and my slow-mo talking. You would all laugh hysterically seeing me like that! Now it's annoying with feeling tired and relaxed mentally, but my body wants to be in motion lol. Maybe if my CBC's rise, I can enjoy the previous bipolar ridiculousness!
2- Dr appt/planning/discussion and Velcade Injection today, Tuesday March 9.
3- Both days, with 20mg Dex Steroids and Pomalyst.
4- Discussed both Blenrep and Melflufen or stay the course with Darzalex, Velcade, Pomalyst, Dex steroids. I do feel my awful Abdominal Alien Mass may have shrunk a tiny bit. Is that from Radiation or Chemo, or the fact that I've lost 10 pounds from not being able to eat because it's so big and taking up so much room. I hardly have an appetite, and when I do try eating, I can only do a few bites before I am full or it begins to taste yucky. All the food I have here, and see on TV still looks totally delish, but Alien says NO! ... Dang thing, I wish it could be just suctioned out. Today I had my Nurse stab it with the Velcade shot. LOL not really, but I did do the Velcade injection on my Right side LOL. Wish it would just disintegrate and I could pee or poop it out LOL. You ask why I can't have Surgery on it... first of all Drs have said it's too "dangerous" because of where it's located (Abdominal near Kidney, Liver, Adrenal), and the Mass would just grow back, as the Myeloma is everywhere and just keeps recreating itself. Same with the Lung Mass, Skull mass, etc, not to mention all the bone fractures, breaks, lesions, plasmacytomas, etc. Myeloma just loves me and wants to make it's presence known everywhere, 24 7. Ugh, where did it come from, I will always wonder... Whyyyyy meeeee????
Well time to try some tea, drink a bit of it, hate the taste, throw it away and try another. Not to mention see if what I ate earlier, agrees with Alien... doggies sure get a lot of left-over treats now lol.
Thanks for reading and caring as you do, and offering medication suggestions and heartfelt comments as you do. Means so much to me :)) x0x0
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 the flu and colds just like everyone else, but recovered like everyone else, 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.
Hello Friends and Followers-
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....
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),,,
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!!!
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....
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...
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:
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.
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?”)
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.
The antibody made by myeloma cells can harm the kidneys. This can lead to kidney damage and even kidney failure.