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me oh my oh multiple myeloma

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portrait of a 38 yo woman; recently diagnosed with stage 3 multiple myeloma.

i got the call on May 29th around noon.

my doctor had left me a message to call him right away, stating that he’d received back my lab results from the day prior and they were showing up as “abnormal” and he was “very concerned”. when i called back, he had a slight panic in his voice and asked that i come in so he could admit me to the hospital for further testing. to say i was caught off guard would be an understatement.

during that initial conversation, i wasn’t as worried about my results as i was heading an hour north for who knows how many days with no time to prepare. my reply was simply, “you don’t understand. i can’t just leave. i have animals that depend on me.”

i also had dishes in the sink, a lawn to mow and other responsibilities that didn’t allow me to just pick up and go at a moments notice.

to be honest, i didn’t really know what was going on, but i knew before i went in to see him that something wasn’t right with me. that’s why i made the appointment in the first place.

my symptoms had started last year. they came on slowly and most of them i could easily make excuses for. the best way to describe how i felt was that i started out as anemic and became severely anemic.

i was always cold, which felt normal. i was always tired, which felt normal. i worked a full time job, plus i did ranch work on top of it. i had a herd of cattle, a few horses, a cat and a never ending supply of dogs i was taking care of. of course i was exhausted.

then the heart palpations began; shortness of breath soon to follow. we had a big winter here in montana and i thought i was just overworking myself. i started to get infections in my hands from cuts or splinters that took forever to heal. then came the vision changes. my muscles were fatigued in a way i’d never felt before. i thought maybe i was out of shape. i mean, i used to be able to lift 100lb hay bales and now i could barely lift a 50lb bag of mineral without feeling like i was gonna topple over.

by the time spring came, i had become so weak that i had to take breaks when shampooing my hair. i even had to take breaks when i walked 20 ft because i would get dizzy and light headed. again, i didn’t know exactly what was going on, but since i could go at my own pace, i just sucked it up and kept rolling forward.

the final straw happened in late May. i had just gotten over a sinus infection and suddenly was hit with the flu. none of this was normal for me. i had been under the weather with a fever for a week or so and once it passed i started to hear my heartbeat in my ear. i waited another week to see if it would go away on its own, but it had progressively gotten worse. i could ignore everything else, but when you hear your own heartbeat all day, it’s not something you can sweep under the rug. so, i made an appointment.

i was lucky enough to get an incredible doc who listened to me spout off all of my symptoms. we talked for almost an hour. i had been in to have a physical last fall and honestly, i didn’t feel heard when i was in that appointment. i think the doc at the time had just assumed that the few symptoms i was feeling back then were typical. i was young and there was nothing to be concerned about.

my doc had set up a meeting with the hematologist and i went in to see him a day later. after doing a bone marrow biopsy and 24 hour urine analysis and bloodwork and more bloodwork and double and triple checking all of my results, it was finally confirmed that i have multiple myeloma, which is a not so common type of blood cancer for someone of my age, gender and fitness level. in fact, there’s about a 1% chance for someone like me to have multiple myeloma, which begs the question, “where were these odds the last time i bought a powerball ticket?”

the hematologist had gone over previous bloodwork from physicals i had over the years and theorized that i’ve most likely had myeloma since 2016. he was actually floored by the fact that i hadn’t been in months prior, laid out on the ground, grasping for life. i took this as a high compliment and testament to the strength i didn’t think i had in me anymore. it kinda made me feel like a warrior.

the information was pouring from every direction and as i was trying to take it all in, everything started to make sense. to be honest, there was a huge sense of relief in knowing that there was something really wrong with me. i had begun to think it was all in my head. my zest for life had become more of a numb sensation and it was few and far between that i felt inspired, which wasn’t normal for me. i’ve always been pretty good at finding the sunshine, along with all the silver linings. it could even be said that i’d been asleep at the wheel for quite some time.

during those following few weeks, every new doctor or nurse or lab technician or radiologist i saw would either try to console me with a sad look on their face, apologizing for how abnormal my blood tests were; or just stare at me in a state of confusion because i didn’t actually “look” sick or fit the demographic for what i had been diagnosed with.

i ended up having an allergic reaction to one of the first medications i was put on and the ER doc said, “look, i’m not being lazy. i just don’t know what to do with you.” he gave me some bendaryl and sent me home, which only made me more sick. i don’t blame him, though, i wouldn’t have known what to do with me either.

the crazy part in all this is that as “sick” as i am, i’m also regarded as being “healthy”. the last time i had to take any sort of antibiotic was back in my early 20’s. medicine is something i have always considered as my last resort. my organ function (so far) is on point. my bone scans came back clean. my oral health is 100%. i’m young and in good shape.

this past month has been a whirlwind. when i was diagnosed, i was teetering on the edge of critical status. the myeloma was residing in 85% of my bone marrow, which is what puts me in the stage 3 category. stage 3 is considered “high risk” or “terminal”, depending on what literature you choose to go by, so everything went from zero to “holy shit hang the hell on” very quickly.

needless to say, i had to start chemo right away. my first chemo regime began on june 11th. i go in once a week and will continue to for about 4-6 cycles, which is the equivalent of 4-6 months. the hope is to get me into remission so they can extract stem cells from my body that they will regenerate and freeze. then i’ll get hit with the big daddy, literal “lose-your-hair-and-your-lunch” chemo for about 4-6 weeks before i undergo an autologous (using your own) stem cell transplant.

you know the folks that say they’re the hero of their own story? well, if all goes according to plan, this is going to be a very literal thing for me, which i find to be pretty neat. talk about having some bragging rights. i, quite literally, will get to save myself.

as wonderful as the montana hematology/oncology team has been to me, they don’t have the facilities here to care for someone in my situation for the duration of my treatment, so it’s been known that i’m going to have the leave the state since i started the first part of my therapy.

it was hard to know where to begin with all the logistics and figuring out where the best place for me would be.

i ended up flying out to minnesota’s MAYO clinic and met with one of the top doctors that specializes in multiple myeloma. we discussed treatment plans and potential clinical trials. it was a good and informative trip, but to be honest, i personally did not find minnesota to be a place of healing.

if my brief stay in minnesota taught me anything, it’s that healing isn’t just about having the right doctors. what i need for myself, besides all the specialists, is familiarity and support and love.

after careful consideration, i’ve decided to go back to my homeland of portland, oregon where i will plant my feet for the next year and finish out my treatment. OHSU has a team that specializes in multiple myeloma and they will be taking over my care after i leave montana.

i already have a place lined up, thanks to my amazing mom and all her wonderful friends, and will be relocating after my 3rd cycle of chemo is finished in montana. this way, i can get settled in and get to know my doctors and have them get to know me before i hit the hardcore chemo and get sick to ready me for my transplant.

my mom will be putting her life on hold and coming up to live with me until i get through my treatments because i’ll need 24 hour care. she’ll also be helping me with ferdy, my big and spry 15 1/2 yr. old benjamin button of a mutt.

after the transplant, my body will have to build back up its immunity, and if all goes well, i’ll be in remission and go on a “maintenance” plan to keep the cancer at bay.

at this point in time they say there is no “cure”, but that it’s treatable. i don’t necessarily believe all the hype and it truly depends on who you talk to and how they word it.

all i need to know for myself is that i make my own choices as much as i make my own chances in this; and my choice is to have more hope than i do cancer in my bones. i’ve never fit into any sort of mold and i’m not about to start now.

as far as the big things in my life go, such as my autonomy. my privacy. my ability to care for others, let alone myself. my ability to have children. it’s all for the birds at this point.

over the course of this last month, i’ve been letting go of my expectations and foresights. i’ve been letting go of my attachments, my pride, my ego and my self worth issues. by doing so, my mind has been able to clear itself of the things that really just don’t matter. for example : i’m gonna lose my hair and a part of me is looking forward to it. before i go all GI Jane, which is something i’ve secretly wanted to do for a long time, i get to try a few new hairstyles out. i’ve worn my hair the same since 8th grade. now i have the opportunity to do something different. when my hair grows back, it will most likely grow in thicker. possibly even curly. i’ve had very fine and thin hair my entire life so i see this as a bonus.

i’ve definitely had and will continue to have some off days; mostly because my body reacts oddly to the meds i’m on. i know they will pass, though. i know all of this will pass.

i know that i will get to be with horses again and i can still keep my dream to have my own someday. i may even finally take that trip to costa rica to meet a sloth like i’ve always wanted to do. after i am healed, the sky isn’t gonna be a limit for me, it’ll just be one of my many million dollar views.

from here is where i consider my real life begins and my old life comes along for the ride. this is where i let go of the control i never had. i find my biggest power comes in these small, but mighty, shifts of perspective i’ve either come to on my own, or been reminded of by someone i love. i’ve somehow managed to keep my head on straight and held high through even the most overwhelming moments that have come my way. it’s what i consider to be my biggest blessing in this cancer curse.

i feel and see too much beauty in this world to not open my chest up wide and enter this next phase with all the love and light that i have within me so that when things get dark, because they will, i can use that love and grab my platelets and proteins by the balls and make a fun little game of it. because we are all in this together. all in the same body and all of the same mind.

up to this point in my life, i’ve taken great pride in the fact that i’m 100% self-sufficient. i know when to hold em, but i also know when to fold em. and right now, the reality is, everything is different and i’m going to need all the help i can get.

i’ve already racked up over 20k in the last month in medical bills and insurance is only covering 80%. my transplant alone will cost 25k or more. weekly chemo treatments are 1k after insurance. there are so many costs involved in treatment that my head spins when i start to go over it all.

it’s pretty ridiculous how costly things become if you choose to use western medicine to ‘stay alive’. i feel for those who don’t have insurance or a support system. i honestly don’t know what i would do if i didn’t have either of those things.

when i get to portland, i do intend on setting up shop to sell my prints with a local print shop. that will at least allow me to offer something in return since i’m out here asking help, financially. once i do get my printing set up, i will make an announcement. someone else will have to take over the operations for me until i am well enough to do it myself, but i’ll make sure whatever i choose to offer will be quality controlled. for now, though, i don’t have much to offer other than the guarantee that i will pay my life forward in every way that i can.

it’s been hard to carve out the time over this past month between feelings and phone calls and paperwork and reactions to medication, but things are going to start to settle down once i get into a routine and i’ll have more time to spend writing out my thoughts on my overall experience and all the little behind the cancer scene nuances involved, so i’ll be starting a little side blog if anyone is interested in following along. i can assure you that i have so much more to share and say. again, i’ll make an announcement when all that’s in play.

after i was given my diagnosis by the hematologist, i went back to my other doc to thank him for listening. i told him he was my hero. he told me that i would have a lot of heroes in this and he couldn’t have been more right. there is not one single individual that can get me to the other side of this; which is why i’m hoping to create a village.

with that, from the bottom to the top to the insides and outsides of my heart, thank you for listening; but even more so, thank you for being here. xx britt

Fundraising team: amy o’hoyt (1)

Britt Myers
Organizer
Polson, MT
Amy OHoyt
Team member

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