For a cowgirl that used to have so little drama, I guess I've become the Myeloma Drama Queen!
So much news at my Tues May 8th monthly Dr appointment and Darzalex infusion. I'm still reeling and way too exhausted to tell the "hole" story now. I will post my news tomorrow below, with my PET CT Scan reports for your viewing pleasure :))
This should get you in the mood!
See you tomorrow for the Hole story....
=================================
5.9.18
Here's the "hole" news:
Just to recap, I did the full body Pet Scan back the first week of April, 2018. Prior to that, I had done annual Skeletal scans, Xrays, Bone Density scans, etc. These didn't show a "hole" lot, but did show I had... no joke... a Hole in my Head, left side skull, a Lytic lesion. Yes, serious stuff, but I have to laugh at the first Lytic lesion I knew of, was... a Hole in my Head :)) Very fitting for me!
Anyway, after being so sick last month, I didn't aggressively pursue the results of the Pet Scan. I did email my Dr once about it, and she replied that there were lesions seen, but she did not go in to detail. Now I know why, and she indicated this yesterday, at our appointment. There was just too much to tell, as so much was seen, that she of course wanted to explain the details to me in person. We discussed my Labs, IgA, MProtein, CBCs, etc, and remarkably, those are ok, except of course, my IgA is out of the normal range, but nothing new about that. It went up slightly, as you'll see below.
And then she showed me the results of the Pet Scan. I'm a pretty savvy gal, but I sure don't know Anatomical terminology well, and so much of what we read together was, to me- "wow, really, wow, where, it's what, there too, wow, really, that area also, wow, there too, wow"... So I asked her to point on my body, where all the lesions, the holes, were. That brought the point home when she pointed to or touched where... Legs, Femur, Thighs, Pelvis, Spine, Tailbone, Ribs, Clavicle, Skull, etc. I maintained my composure. It was just so overwhelming, and I just couldn't absorb it all. I was also buzzed on my 40mg steroids, so that helped me still be me. I didn't really feel the full impact of the report at that moment. Scott asked me if I saw the scan pictures. Wow, no. I didn't even think of that then... I'll get right on that... soon...
After we confirmed continuing on the current treatment plan of Darzalex, Pomalyst 3mg/2mg, and Dex steroids at 40mg, she asked if I'd be willing to start on Zometa, the bone strengthening Bisphosphonate. She barely mentioned it, and I began shaking my head NO. She smiled, and said she knew I was reluctant, as we had discussed it before, but she wanted me to think about starting it. I said Nope, but...well... maybe this summer. See, I've just read a lot of negative reports of the side effects, and possible "ONJ" complications of Bisphosphonates, that I just don't want to take on another chemical at this time. Yes, call me stubborn and stupid, but, geezzz, 8 years of treatments, 8 years of side effects, 8 years of mentally processing all of this, 8 years of only having a few "good days" per week... blah blah, .... I just don't want another thing to deal with now. Yes, sounds ridiculous, as why would I refuse a medication that is supposed to help me, and help strengthen my bones, and help tame myeloma's dangerous invasion. Ugh, it's just so overwhelming all the time to battle. All the time having to think about every aspect of myeloma and my health and treatments and side effects and little quality of life. Yes, I am still alive because I have been willing to treat to infinity, and I have great insurance covering my treatments, but I just keep hoping for a magical break. Ha! I'll get that "break" in terms of broken bones, right... Ugh... so much to process... yet as I always say, in comparison to so many myeloma patients, my situation isn't as bad... well it is, but it's not... it's all so relative... Holes...
Dr P is a wonderful Dr, and I like her very much, and appreciate her knowledge and style with me. She is very concerned about my status, and does not want myeloma to get ahead of us. She encourages me to consider all options, and I will. Soon. Possibly. Maybe. Yes, I will... maybe...
Next, off to my "other office", the Chemo Lab. Crazy how I feel so comfortable there, and I'm able to "enjoy" my treatment time. The staff is so caring, concerned, thorough and welcoming. I'm sure not everyone feels this way, and it's a very scary place to many, but I've been doing this for so long now, it's really like a 2nd home to me. It's a "spa date" for my cells. Good poison, powering my weak fighter cells. It's a chance for me to just sit, be taken care of, and not have any other responsibility than focus on me, which is a big rarity in my life... I feel well taken care of there. Watching the IV drip into my veins gives me a sense of comfort and security, knowing those powerful chemicals are pummeling myeloma and keeping me alive. Keeping me alive for a little while longer. A long while longer? Who knows? Just please keep me alive magical chemicals...
Prior to arriving to my appointments, I take 40mg of Dexamethasone steroids when I get up. On treatment days, that's around 6 or 7 am. They often fully hit me when I walk into the chemo lab, which is such "bad timing" as I'm feeling no pain, and quite jovial. My happy affect can be so "inappropriate", so I work on taming my party persona, knowing there are new patients, scared patients, sad patients, and very sick patients there, who probably view me as a kooky lunatic, bouncing in as I do.
But soon my goofy mood is ambushed with a 50mg push of liquid Benadryl, which quickly counteracts the silly making effects of Dex. I become droopy, mush mouth, blurry brained, dizzy and sleepy. It's really quite hilarious observing what all these meds do as they collide within me. Meds are a powerful thing. I never knew, since prior to myeloma, I rarely needed medications. Soon I feel as if I could sleep, yet my brain is still so alive. Holes. Thinking. Thinking. Thinking. Especially then, this day, that I found out how many myeloma created Lytic Lesions have grown in my bones, making holes in my once strong, never had a broken bone, skeleton... I have holes in my bones. Many bones with holes. Holes in my Bones. Up and down my body. From Head to Legs. Holes. Wow...
Minutes turn to hours. Hours of infusion. Hours of processing my status. What happened to me. Why? How? When did myeloma invade? How can this be? Is all this a mistake. Holes. Can't be my life. I'm sad. I could cry. I don't want to cry in the chemo lab. I'm quiet. I just watch everything going on in the chemo lab. Holes. It's so busy. So much hustle bustle. So many patients. Nurses are so busy. Chemo Pharmacists in and out consulting. Holes. Drs in and out visiting patients with issues. Patients pushing their IVs to the bathroom. Family members visiting their patients. Families and Friends in and out. Consoling, helping, pushing, supporting. I'm alone. Holes. I always come alone. I don't want to impose on anyone to bring me. Normally not a need to, although the nurses always worry that I drive myself home. I always say I'm ok, even when I'm not ok. Today I am not ok. Holes. Mentally, not ok. Physically I feel ok. Side effects yes. But I'm functional physically. Psychologically I am not ok this day. Holes. But I'm Julie. Counselor Julie. Cowgirl Julie. Momma Julie. Animal rescuer Julie. Cancer Warrior Julie. I have to be ok. I make myself ok, even though I am not ok. Holes. I'm so sad. Tears are welling up. I suppress them. I counsel myself. Holes. I'll be ok. Nothing has changed. These awful lesions didn't just appear today, I tell myself. I've been living with holes for years. I just found out about them. My reality has changed. I'm more scared. I'm sad at what has happened to my life. What life I have left. I look at my body. My legs, arms. Feel my ribs and back. I think about my spine. Holes. So scary what's down the road for me... I feel so disconnected to myself. How? Why? When?, did all this happen? I'm so sad. But I must push forward. I'm alone. Holes. But I'm ok. I make myself ok. I push back the tears. Holes. I push forward. I smile and chat when necessary. I fake it til I make it. I push back the tears. Holes...
Finally after being there from 10am, it's about 4:30 now, infusion is done. I look at my paperwork and remember my Dr wanted me to get a Femur Xray. What's a femur. I think I know. Don't feel like doing it today, but then I know I won't feel like doing it this week, or next... chemo crash time in a day or so, for many days. I won't feel like going back to the clinical environment. I'll want to pretend I'm well, that I'm ok, and I don't "need" to be at medical clinic. I pack my bag, say goodbye and thanks, putting on a smiley face. Several nurses say, "wow Julia, you were so quiet today, are you ok?" "Actually no, I'm not", I reply. "I received some really bad news from my Pet Scan". They say they are so sorry to hear this, but it's late, patients are leaving and they have a lot of follow up paper work to attend to. I remember the end of the day in my office. So much to do. I will myself to Radiology. I check in. My life is surreal. Holes. How can all this be? My name is called, and a sweet friendly tech invites me in, tells me where to go, what to do, how to lay down. She shifts me this way and that. The Xray machine whirs and clicks. I submit. I'm sad. I'm in disbelief. Holes. This really can't be my life. I'm in a movie, a dream. I'll wake up soon. Nope, this is my reality. This is my life. Holes. Scans done. Grab my things, I walk to my car. I take the long way there, the outside way, I need fresh air and sunshine. Holes.
I take streets home rather than the freeway. I don't want the pressure of fast cars, angry stressed out end of the day, commuter drivers. Windows down, I need fresh air. But it's not fresh. Too much car exhaust. Fast angry drivers. I look for the pretty spring flowers to distract my heavy thoughts. Can't. Holes. I'm so sad. I shake my head in disbelief. I'm driving home from a chemo lab. I just had liquid immunotherapy pumped into my veins for hours and hours. Along with other medications to assist for a seamless infusion. Chemotherapy to keep me alive. This, the only thing keeping me alive. Holes. I have holes in my bones. Holes. Cars whizzing by me have no idea my story, and I, no idea theirs. Thoughts. Too many of them. Thinking, thinking, thinking. Holes. Tears welling up in my eyes. Lump in my throat. I have cancer. Holes. Incurable cancer. 8+ years of treatments. Holes in my bones. It will never end, until it's the end. This is my reality. Holes. This is my life. Holes. I am lucky to be able to do as I do. Holes. I have many blessings and good fortune in my life. I have so much to live for. So much to be grateful for. I will be ok. Holes. I will myself to be ok. Holes. I must be ok. Holes. Pretty green trees. Flowers. Sunshine. Mountains in the distance. Drive home Julie. You will be ok. You're not ok, but you can be ok. Holes. Holes in my bones. Lytic lesions. Everywhere. Myeloma eating me up alive, from the inside out. I read about it, I knew that's what myeloma does. But I thought I'd be different. Yes, always thinking it will be "different" for me.Tears. 8 years. How many more? I want to live. But I also want "quality of life". What will my life become... Tears. Holes. Honeycomb holes. I think of honey. Honeybees. Yummy real honeycomb. I laugh. Me and the bees. Life giving honeycomb to them. Life stealing honeycomb holes and lesions for me. Tears... Suck it up Julie. Wow... really life... wow... Holes.
I made it home. Jim and Alissa are there. They too are so sad with the news. Disbelief from everyone. Lots of supportive friends texting, messaging, responding to my facebook post. Thank you for all the love and support. It's all so surreal. My home life distracts me from my deep thoughts and tears. The doggies are happy to see me. Goofy, wrestling, playing. No clue of my drama. Holes. I read the report aloud to Jim and Alissa. I sent it to Scott. I say the words listing where my holes are. I laugh at my Anatomical ignorance. I must look all these terms up. I must learn the "geography" of my holes.
https://www.cityofhope.org/blog/multiple-myeloma-bone-health
Here's the report of where my holes are. Where my honeyless honeycomb is growing. Holes. Holes. Holes... Holes in my bones. Everywhere. Myeloma eating holes in me...
Scan details, page 1
(click to enlarge)
(click to enlarge)
IgA stats
Light Chain stats
No M Protein stats
And so that's the Whole story of my Holes.
Actually I have a Hole lot more to tell, but this wound up a very long post. If you've made it this far, thank you so much for reading, caring, and being interested in my thoughts, feelings, rants, stats, and life. We all have a story. We all have challenges. We all have joys and pains. No one knows their clock on this earth, and when their tick will tock. And there are so many many many lives out there suffering to such greater degrees than mine, and I know that. I'm just putting my real self out here, because I hope my sharing of my story and challenges, might help someone with their battle. I'm ok, and I will be ok. One day at a time. One issue at a time. One challenge at a time. This is only one mountain. My mountain. One of my mountains. I am surrounded by mountains of challenges. Everyone is. Isn't it all in how we deal with our mountains of challenges? I chose to be ok. I chose to look on sunny side of the mountain. I want to laugh. I want to be happy, for whatever time left I have on this beautiful earth. Holes. I have holes in my bones. It first began with knowing I have a Hole in my head. Really. That has to make you smile...
No myeloma bone damage here
Just happy, healthy, silly puppy
Live happy, live well, and make a difference somewhere, somehow,
with someone or something as often as you can!
Yours words I know are true, but I don't dare think or say them. #whatwedotocope jan
ReplyDeleteHi Jan, thank you so much for your heartfelt comment. Yes, it's crazy the thoughts we have milling around our brains re this crazy myeloma status. And I only write the tip of the iceberg about mine!
DeleteAre you,or a loved one, a myeloma patient?
Thank you so much for reading my blog and letting me know my writings are meaningful to you. :))
Julie,
ReplyDeleteI follow your blog regularly. I, too, have IGA kappa light chain myeloma. I take Zometa 4 times per year. It's not that bad, The first time you get it, you may have flu-like symptoms for about 24 hours. If you get dex with it, there may be a delay of a day or so before you get the reaction. After the first infusion of Zometa, usually there are no further reactions.
I am a small woman, (5'1" 125 lbs.) it looks as though you are small, too. I have had osteoperosis since my early 50's, (I am now 63), long before I developed myeloma. Small boned, caucasion women like us are more likely to have osteoperosis. I also have numerous lytic lesions scattered throughout my axial skeleton and "holes" in the head, too. I have a lytic lesion in my humerous bone, too. I haven't had a PET/CT recently, so I don't know the status of these lesions at the moment, however, I do know one thing; I don't want to have a fracture.
Recently, my onc tried to switch me to the newest bone med, xgeva, (denosomab). I had a bad reaction to it. It dropped my calcium levels too low, and I felt weak for a few days. So, we are going back to the Zometa, which at this point, causes me no problems.
So, listen, Julie. Go to the dentist. Get any dental work you need done completed. I know you don't like to receive any more drugs than absolutely necessary. Neither do I. I had two implants before I agreed to get the Zometa, and then I waited about 6 months after that was completed before I got my first dose.
Zometa has some anti-myeloma properties. It's not such a bad thing. You can try it, If you decide that the side effects outweigh the benefits, you can discontinue it. We do what we have to to stay alive, don't we? So we don't break a bone and have to be a burden to someone else?
I'm just like you, Julie. Very independent, took care of everybody else, worked, exercised 5 days per week, cooked, cleaned, laundry, food shopping, care of elderly Mother.....you name it, I did it! Then, myeloma!
Early retirement, (although I still work part-time from home,) I am lucky in that I have the type of job I can do from home. I am also taking care of one of my grown kids, who unfortunately, has a mental illness, (which happened after I developed myeloma.) So, I have to stay in shape for her. She depends upon me.
Try the zometa. It may help those lesions. Julie, neither one of us would be here without modern medicine. You certainly have a right to do whatever you want to do. And, if you take the Zometa, and you feel terrible, you can b--ch to me!
Just wanted to let you know you are not alone! I care about you!
Ellen Goldstein-Harris
Ah, Ellen!! Thank you so much first for reading my posts, and 2nd for your detailed, very helpful reply! I really do appreciate the time you took to share your life and experiences with me :))
DeleteYes, we have many similarities. We're the same size too :) Go us for not letting steroids turn us into the Pillsbury Dough Girl :)) And we many of similarities you mention, altho I am IgA Lamda. But at this point, what's the diff right?
I used to naively think being IgA let me bypass getting lesions, since the Skeletal scans never picked up on lesions... or else they're new from Darzlex?
Anyway, yes I agree with everything you've said re Zometa. I always think NO at first, and did for years, but I've read a lot and talked to a lot of myeloma Pts since my scan results, and I pretty much have accepted I will do it :((
Crazy how I already had my dental appts planned for this month and next, and then I will do the Zometa.
I hear SLOW infusions prevents exaggerated side effects, so I will make sure to do that. Please tell me your infusion recommendations.
Thank you so very much for following my blog Ellen, and for your detailed and very helpful reply :))
How many years have you been battling MM? And what meds have you done so far?
Again, thank you for your kindness and caring Ellen :))
Hi Julie,
DeleteI was diagnosed just about 4 years ago, in April, 2014. My dad died of MM in 1969, so I knew of the disease, and I knew I was in trouble before my doctor did, and I insisted on the tests for it, even though she was "sure" I did not have it. But the unrelenting rib and sternum pain, mild anemia, (which I NEVER had before -- I used to be a blood donor), frothy urine, (the proteins spilling out) and fatigue unlike anything I had ever experienced, told me something was very wrong. I guess I am the opposite of you....I wanted to know what was wrong with me. By the time I was tested, my kappa light chains were over 12,000. My creatinine was 1.7. I still have mild kidney damage which will never heal.
I did 6 rounds of RVD, which brought me close to a complete response, although some m protein too small to measure still showed up. Had a stem cell, which put me into an scr, which I am still enjoying today. I did 6 months of RVD lite, and then had to drop the rev because of severe muscle pain that landed me in the hospital. Since then, I receive a velcade injection with 12 mgs of dex every other week. Plus the Zometa every 3 months. I feel pretty good, can do almost everything I want to do, my blood counts are good, although when I get a cold, (a couple of times every year), it takes a long time to throw it off, and usually I get a sinus infection or bronchitis. But, usually, it's easily managed with a zpac and nasal or bronchial inhalers for a short time. I have a lot of allergies, so I was prone to this before, too.
That's my story. I have a SUPER GREAT oncologist who is my doctor as well as my friend. I have a few other terrific friends, without whom, I would not have made it. I have good medical insurance. I am not rich, but I don't really have to worry about money now, (if I live long enough, I will....LOL!)
So, that's my story. I love reading your blog. You are very real. I'm a "city girl," (NYC), so it's nice to see others' lifestyles....
I think my infusion time for Zometa is about 30 minutes. See if you can at least get it to be that long, even longer, if possible. And of course, drink a LOT of water afterwards. And take two tylenol right after the infusion. (Of course check with your doctor.) Keep in mind, you may feel crappy for 24-48 hours after that first infusion, but it WILL be much better after that. Plan to lay low for a couple of days. After that, you should be fine.
Good luck! You can do this!!! Let me know how it goes....
Regards,
Ellen
hi Julie, sorry about the holes. it's such a tricky disease. I don't have the holes but our mental state and how we view the disease and our life is so similar. i totally get feeling like you're in a dream state. one of these days I'd love to come out and see your animals. hang in there!
ReplyDeleteHi Matt! Thanks for following my posts and for commenting :)) I love your blog posts! Yes, we have so many similarities of timing with MM, meds, retirement, and being pissed off, and incredulous how MM has stolen our lives. There are also a lot of Pts in my MM group that have Dr Berenson.
DeleteThanks for appreciating my animals. They are all characters for sure. I worry now more than before about fractures and breaks doing ranch chores :((
Now I know why I hear so many creaks and cracks when doing stuff... my Dr even laughed when I said "can I go horseback riding", after she told me my scan results LOL
Thanks for reading and commenting Matt, and yes, maybe one day we can meet up and lament myeloma :))
Hi Julie. I have followed your blog for quite awhile and finally decided to reply. I was diagnosed Feb. 15, 2013. I started Chemo to prep for my stem cell transplant, July 2013. My stem cell birthday is July 19, 2013. I was in remission for about 18 months before my M number and Lambda numbers started to rise. We watched it rise for awhile and then started treatment Feb. 2016 and continued through May 2017. My last chemo cocktail was Krypolis, prednisone, and Polymst. I have bloodwork every 2 months at IU Simon Cancer Center in Indianapolis. I HATE waiting on the results knowing that chemo is always in my future. So far I have no lesions but I have pain all of the time. I was sorry to read about your recent experience with lesions. I often wonder if my pain is because of lesions. I did take Zometa, but I am currently on a break. I understand your concern about the side effects. All of our treatments have side effects and there are times, I DO NOT WANT ANYMORE. I have mastered the "put the face on", but there are times I just can't. I am too fatigued, too achy, and too emotionally upset. We will fight the good fight.
ReplyDelete