Thanks for checking in and following my ongoing Myeloma cancer blog, which I began June 2010, to document my "summer vacation" at City of Hope Hospital for my Autologous Stem Cell Transplant. I hope you enjoy my candid musings and treatment status updates. Please comment so I know you've stopped by! Look for my 2021 status updates on the 1's, but I'll surprise you and post in-between :)) Thanks for
reading, caring and commenting!
I'm still obsessing on my Holes. On my Lytic Lesions. On my Plasmacytomas. On my holey bones. On how my perspective of my self, my body, my life, my longevity, my journey with Myeloma has now changed. Yes, changed. Knowing I have INNUMERABLE HOLES IN MY BONES, has really really affected how I see my incurable, always getting worse, journey with Myeloma...
I have a new reality, that's probably not new news inside me
I now know I have holes in my bones
I now know I am so much more fragile than I previously knew
I feel like my bones are made of glass, ready to break at any moment
I feel so fragile, in so many ways
I am so aware of all my aches and pains now, that I ignored before
I am so much more aware of my "breakable" status
I am no longer feeling flippant about my diagnosis, this makes it real
I am no longer in denial about having terminal, incurable cancer
That word "INNUMERABLE" has changed my life...
Over the last 8 years, I never hesitated sharing my story of diagnosis, treatment, side effects, and the mental and physical aspects of being a myeloma patient. I quite boldly and openly, to many people's surprise and shock, shared all my torrid details. Funny and painful details, medical and psychological details. I shared with anyone that asked. Just like I do here with this blog. I told my story openly, candidly, honestly, without any hesitation. Ask, and I'll share anything you want to know about my life. It was a crazy, interesting, jaw dropping story for sure.
But I always felt that I was sharing someone's else's story. I always felt so disconnected to being an ill person. I never could relate to being a terminal, incurable cancer patient. I just got used to treatment. Went to the chemo lab 2x weekly, or 1x weekly, or 1x weekly every other week, or 2x per month, or 1x per month as I do now. I take "innumerable" pills daily, weekly, monthly, yearly. I got used to the weekly bi-polar steroid life. I got used to not feeling well 4-5 days a week. I got used to feeling fatigued all the time. I got used to feeling "sick". I got used to being limited. I just adapted and got used to all the physiological changes. But I forged ahead, doing my life, in the small ways I could, when I could. I just continued doing my life, one day at a time, depending on how I felt. I didn't make huge changes. I was just more limited. Limited in energy, limited in days to do things. Limited in contact with humans due to cootie contamination. Limited in energy in so many ways. Limited by side effects. Oh yes... there was one huge change in my life last June 2017, when all this caught up to me, and I made the choice to retire from my 35 year career as a college counselor.... because of myeloma and what myeloma had done to me and my life...
But I still have my life. A great life, though so limited. I still have a variation of my outdoor, love animals, love nature, life. I still have my amazing life with my family. I still have amazing friends and friendships, albeit, virtually via social media lol. Yes, everything is more complex, edited and slower. But I still have my life.
But How I See My Life Has Now Changed. How I See Myself Has Changed. I Feel So Very Fragile. Like I'm made of glass. So breakable. I now "fear" fracturing, breaking bones. What if I move the wrong way? Turn hard on my clavicle while sleeping? Trip and fall while outside with my critters? What if I just move the wrong way, and fracture or break a leg, an arm, a hip or worst of all, my spine. I feel so fragile, so breakable now.
I have never broken a bone in my life, even with all my horse riding falls of the past! Or from skiing, or hiking, or biking, tennis, or, or, or! Bone issues were for "other" unfortunate myeloma patients, not me. I felt different. I felt I had "escaped" the "bone involvement". I thought IgA myeloma was different. That I was hit more in the immune system, with my continually compromised immune system, always having to worry about getting sick, and being contaminated by human cooties. I thought I was different. I didn't think I had Holes in my bones. Innumerable holes, lesions, plasmacytomas,.. Innumerable. And now that I know I do, I know I am not different. I am like any other fragile, breakable lesion infested myeloma patient. Tragedy can strike at any moment. I'm scared in a way I wasn't before...
My next Dr appointment and Darzalex infusion is Tues June 5. I have a long list of questions for my Dr...
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Thank you everyone for reading, commenting and caring as you do. I write for me, for you, for everyone, anyone, that may benefit from my myeloma journey, medically and psychologically. I write because This Is My Life. Myeloma has taken over my life for 8+ years. Symptoms, side effects, medications, treatments, appointments, extreme fatigue, my thoughts... I write because it helps me process what I am going through. I write because I enjoy sharing my life, my challenges, my struggles, my successes, my myeloma realities,... sharing with anyone that chances upon this Blog. I write because this Blog will be my written Legacy, living on and on and on, beyond me one day...
Denial is my middle name
I'm so silly... thinking this machine, this PET CT Scan
wouldn't show much... Ha! on me...
And of course, it's a perfect "hole" shape :))
Yes, Holes. Lytic Lesions. Holes, "Innumerable" holes, through out my "axial and appendicular skeleton", the report states. I am still stunned and surprised. Shocked. Disbelief. Incredulous. Confused. Sad. Mad. Angry. Betrayed. But mostly Disbelief. How? When? How can this be? Has Myeloma always been eating me up alive? Is this recent? Or has this been since 2009? I have always been a "Why" person, and I will never stop wondering Why about most everything. Just who I am. And I accept that I will only have answers to the "Why", maybe 50% of the time, if I'm lucky.
I read about Myeloma all the time. I want to know, be informed, be in the information loop. But I am not a Scientist or Medical Researcher, Doctor, Nurse, or Pharmacist. I'm a deep thinker, a Psychologist, Counselor. I want to know as much as I can, about all the things I'm fascinated by. But Myeloma has stumped me. I still, after 8+ years, I still don't understand Myeloma. I can't fully process the intricate Anatomy and Physiology of our bodies. Trying to understand Myeloma from a Biological, Chemistry perspective, is frankly over my head, and beyond my advanced education that I do have.
But I read, read, read. I've been looking at Skeltons. At anatomy pictures, charts, diagrams. I'm trying to figure out where all my Holes are. I want to know what these Holes look like from the inside. I want to understand how Myeloma grew all these Lytic Lesions inside me. I keep mumbling "Holes" to myself. Omg, I have Holes in my bones. Innumerable Holes. I have Holes in my Skeleton. Holes. I'm a Holey Skeleton. My bones have Holes. Cancerous Holes. Cancer in my bones. Holes that have cancer. Myeloma Cancer ate Holes in my Bones. Holes. Innumerable...
I took this picture just before the Scan began. You know me, silly, making light of things, thinking "oh this won't show much, but what an interesting medical adventure it is!" I had no idea the irony of the circular shape of the Scan machine! It's a giant Hole. Oh so ironic right! The machine that found my skeletal Holes, is a Hole. A medical Hole I go through to find my Lytic Lesion Holes. Ah, can you believe this! Honestly, I never ever really thought this Hole machine would find so many Holes in me. If you haven't seen the written diagnostic results report, I posted it for your viewing pleasure on my previous, 5.9.18 post.
I received the CD of my PET/CT Scan picture results yesterday. I can't figure out all the data and views. Omg. Each time I click, there were images in the images in the images. I saw my body in various forms. Some views looked like Aliens invading. Some views look like the Stellar System, like Outer Space, like the view of millions of stars coming at you. I saw my spine, my whole body and weird unidentifiable body parts. What is all this? Medical professionals are sooooo smart. I have such respect for all the knowledge everyone in the medical field has. They all look at this, and know exactly what it is. Wow! For sure, at my next Dr appointment, I will have my Dr go over my Scan pictures. Perhaps she can help me find a simpleton picture of my Holes.
I heard Sugar cures cancer, right? ;)
Thanks to all my meds, I really don't desire sweets.
A week ago, Friday May 11th, was my 7th City of Hope Stem Cell Transplant reunion. 7 years, 10 months ago I was hospitalized at COH for a month, for my SCT. Yes I was there a month due to complications from my Hickman Catheter becoming horribly infected. It's a crazy story, that I've shared before, but basically it happened because I was too confident that I was so different, so strong, that germs couldn't invade my system, so I didn't follow of the directions of how to keep the insertion point in my chest covered properly. So when my immune system completely plummeted as expected, (officially called Nadir), from the high dose Melphalan chemo, I didn't have the immune power to fight off the cooties, and wow, did I get sick. They soon did "emergency beside surgery" to remove it, and I was on 5, 6, 7, antibiotics at a time to fight off this horrible Staphylococcus Aureus that attacked me! See, even from the beginning, I have never really accepted myeloma, and that I have a deadly incurable cancer. I always thought it would be different for me. Ha!
There's my room for all of July 2010
My neighbor Gary, who also has Myeloma, his wife and I celebrated our almost 8 year Stem Cell Transplant anniversary at City of Hope last week. Thousands of people there. Just amazing all the families, all the lives saved, ... and then those that were not... so many lives represented... We are the lucky ones!
Yes, Gary is my neighbor, and we both have Myeloma. Get that! He was diagnosed about 6 months after me, and had his SCT about 6 months after me, both of us in 2010. Gary's about 12 years older than me. I am IgA. He's IgG, Light Chain type myeloma. We have the same medical team, similar treatments, and we are both 8 year survivors. And Neighbors. Isn't that crazy! We attend our regional Myeloma support group together also. And when metal mouth from meds and steroids have calmed down, and we don't have GI issues, or we're not too fatigued or sick, we even go out to eat together! Neighbors and Myeloma buddies! What a lovely combination!
Sweetest couple ever!
Today, I'm headed to the Dentist, as so ironically, I had pre-planned dental work scheduled PRIOR to knowing about my Lytic Lesion Holes. Crazy timing, yes. I have a cracked tooth, that I suspect was a result of me tripping and falling into one of our horse poopy containers, and slamming my FACE onto the rim of the trash container, before going head first in!!! Remember that crazy, ridiculous story! I'll find it, and link it here for your entertainment again.... So the plan is to drill down the tooth, clear out any decay, and cap it off. My Dr has me pre-medicating with Clindamycin, to prevent a bacterial infection. Previously, I was reluctant to do what I thought was "unnecessary" antibiotics, but after being so sick so often, I'm on board now :)) Down the hatch 2 pills went, no problem.
And YES....., I have decided to do the Zometa treatments to strengthen my bones, and hopefully fill the Holes, and prevent new ones. Ha! I don't know if Zometa is that magical... I'll begin probably in late June, after my dental work today and again in a few weeks. I will for sure only agree to it every 3 or 4 months, and will make sure to do a very sloooooooow infusion, and hydrate a lot. Thank you everyone, and fellow myeloma warrior Ellen, for your kind and informative comments!!
And that's where it's at today May 18, 2018. My mind is still reeling from all the news, and my eyes want to see these stikin Holes on the scan pictures... Still processing the word "INNUMERABLE"... that's sure a wake up call... "Innumerable lytic lesions throughout the axial and appendicular skeleton..." Holes. Innumerable Holes, has taken over my silent mental vocabulary.
We had a low key, but very fun Mother's Day. I feel loved every day, and Myeloma can't steal that from me. Hope all the mom's reading this, had a lovely day too.
The Fab 5!
They are my life!
Our roses are incredible this year!
So much beauty, heals my soul
And the beautiful sweet scents are just amazing!
"Innumerable" roses :))
City of Hope
Thank you for my very successful July 2010 Stem Cell Transplant
So now... it's all about obsessing on When, How, Where my Holey bones will crack, fracture, break.. Where's T9 anyway? Will I break my Clavicle turning in bed one night? Where is my right Scapular Spine lesion? Will I cough wrong, move wrong and break ribs # 3 and 8? Where's my left Sacral Lunency? Will my left Femoral Plateau crack and break, or plunge off a cliff? Or my Proximal Tibia? Or my Hypermetabolic lesions do something hyper. Or the Osseous lesions, do whatever they do? And of course, what would all this be without my lesion in my Skull... my oh so ironic Hole in my Head!! My brains will seep out...
Live happy, live well, and make a difference somewhere, somehow,
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 :))
Thank you for reading and caring as you do about my crazy Myeloma journey.
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.
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...
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,
Just a quick check in to let you all know I am finally feeling better, and getting beyond my gloom and doom. I was always so healthy, well and active prior to Myeloma, that being a Sickie now is just so difficult for me on so many levels. I can even handle the terminal, incurable cancer diagnosis, if I can just feel ok. When I don't feel ok, it just sucks the life out of me, drains my optimism, steals my hope, and gives me pause about my continuing purpose here...
But today, thank you Antibiotics, I am a bit better! This past Sunday I finally gave in, accepted that being sick 3 weeks was ridiculous. Even though every day I was a bit better, I finally gave in, and went to Urgent Care. What finally pushed me over the edge, accepting I needed medical evaluation, wasn't the sinus infection symptoms, as those were clearing up, but it was the awful loss of hearing, fullness in my Right ear, the sense of cotton stuffed in my ear, and the overall annoyance plugged ears feel like. I secretly knew I had tested the limits of my weak immune system's ability to dominate this crazy bug. Being stubborn, hoping to be who I was before Myeloma, was just down right dumb! Yes, I can no longer live in the past, hoping my body can always heal itself. I've been pretty lucky so far with battling the bugs on my own, and actually 90% of the time I do finally get well on my own, but geezzz, what am I proving trying to be so strong, and not getting medicinal help. Pride and Stubbornness in this situation is just plain dumb. Stupid and Dumb. Just call me "Dumb and Dumber" :))
So I went, was quickly evaluated for an Ear Infection, a result of the Sinus Infection that hung around for 3 weeks and collected it's final cooties in my ear. I was dispensed the Z Pak: Zithromax, Azithromycin antibiotics for 5 days. Yep, I laughed at myself, chided myself, and mentally bopped myself in the head for waiting so long. Dumb! Should have gone in sooner. But again, I didn't at first, as when I feel so awful, the last thing I want to do is leave my house, then as the sinus infection symptoms sloooooowly improved, I kept thinking I'd be well the next day, or the next, or the next... Dumb. The good news in all of this... no other issues. Chest clear, lungs clear, no pneumonia, no bronchitis, etc. I had effectively battled that part of these evil germs on my own.
Z Pak down the hatch for 2 days now, and headed to take pill #3 after I post this. Amazing what modern medicine can do for a struggling immune compromised, cancer, chemo ravaged body LOL! Duh Julie! Strong miracle myeloma meds are what have kept me alive for 8 years now. Modern medicine is amazing Julie. Accept it! Use it. Take advantage of meds other than myeloma killing meds to heal up. Dumb and stubborn here.
My ear is just now beginning to clear a bit. It doesn't feel as full, and when I purposely yawn and stretch my face, I can hear the popping and crackling of the ear mechanics! Ahhhhhhhhhh, what a relief! I never had any pain with this, just the dull, clouded, cottony ear fog. Ugh, I just don't do well, when I am not well. All my positivity drains, my optimism is stolen, and I am just a weak, whiny, feel sorry for myself, why me person. And in the BIG picture of things, these issues are so small. I just lose perspective.
Moving forward....
Next week, Tuesday May 9, I have my monthly Dr appointment and Darzalex infusion. I'll do labs in a few days, and know my IgA and M Protein status.
ADDITIONALLY... I don't think I mentioned.... I received an email from my Dr, letting me know that my early April PET/CT Scan DID SHOW new, and additional Myeloma LESIONS...
I received this news AFTER my last Dr appointment, so I don't know the details... then I got sick, so I didn't follow up for details. This adventure never stops, is never dull, nor uninteresting, right! I get well from the cooties, and now prepare myself for myeloma bone destruction news. As a fellow myeloma warrior says: "Myeloma is the gift that just keeps on giving!" Yep, forward march we go, one day at a time, one issue at a time, learning from each challenge, each speed bump, on this crazy road to I don't know where...
I'll post the results to this exciting news on May 9 or 10, depending on how I feel from my Darzalex infusion, and the news I hear... May your life be what makes you happy, rewarded, positive, thoughtful and meaningful. And may your body be your friend, and not betray you.
Live happy, live well, and make a difference somewhere, somehow,
Most of my life I was VERY presumptuous about being healthy, taking my (mostly) GOOD health for granted...
I was committed to annual check-ups for all of us, and so late October 2009, my daughter and I went for our annual and very routine physicals.
Surprise, surprise... my routine blood tests revealed extreme Anemia, significant White and Red Cell issues, low Platelets, and a variety of other CBC red flags! I was (stupidly) not worried when my GP doc left repeated phone messages to contact him, and when we did speak, I (stupidly) requested postponement of his referral appointment to the Hematology Dept until the end of the Fall academic term.
Arriving for my first appointment Dec 14, 2009, I was confronted with the check-in sign that read: "Hematology/Oncology"... What? Nooooo! not me... I must be in the WRONG place! And so my diagnosis journey began with vials and vials of blood drawn "stat", urgent Dr consultations, a surprise and painful Bone Marrow Biopsy, a full body Skeletal Scan, more blood tests stat, and then on 12.30.2009... THE revealing meeting... the "huh-what" moment ... the confirmation diagnosis that I, Julie, have CANCER!!!
Happy New Year to me, I just learned a new vocabulary word:
Multiple Myeloma!!! MM, Multiple Mye-what-loma!!!
January - June 2010
My medical metamorphosis began.
I read, and read, and read and researched and researched MM. I trusted my expert Oncology/Hematology team's plan and began my "New Normal" as a cancer patient.
My treatment plan was developed to include powerful Dexemthesone steroids paired with Revlimid chemotherapy, with the plan to be hospitalized for an Autologous Stem Cell Transplant July 2010.
I began living "one day at a time" like never before.
Jim was a wreck. Alissa and Scott were stunned; family and friends shocked.
Me... Cowgirl Up! I got back in the saddle and knew I was in for the ride of my life!
I did well on my initial pill-form Revlimid Chemo, "roid-rage" Dex Steroids and other supportive meds. I am forever deeply grateful and appreciative for all the love and support from everyone in my personal and professional life! I thank all of you for working along with me, and allowing me to continue to lead a semi "normal" life!
YOU have helped save my life!
My treatment trail ride forks to City of Hope hospital as I will saddle up beginning June 9, 2010 for a new rodeo called an Autologous Stem Cell Transplant!
Ye-Ha, let the adventure begin!
Chemical Warfare...
January 2010 - May 2010: My initial chemo regimen:
June 2010: High dose IV Cytoxan chemo Neupogen to build up stem cells for Apheresis, stem cell harvest, which was very successful, as City of Hope was able to collect 9.5 million of my own stem cells
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 multiplemyeloma.
Multiple myeloma is characterized by several features, including:
Low blood counts
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.
Bone and calcium problems
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?”)
Infections
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.
Kidney problems
The antibody made by myeloma cells can harm the kidneys. This can lead to kidney damage and even kidney failure.
