- cancer timeline / journal logs -

October 17 - Four weeks post-chemo

hello again
after four weeks I feel like most of the chemo symptoms have finally left
except for chemo brain, which is definitely still screwing with me

I started therapy on Monday, my therapist is super nice and I look forward to seeing how my therapy journey goes :D
and on Tuesday I saw a PA who prescribed me some anti-anxiety meds (10mg tablet of Escitalopram taken once a morning)
I really like it, it makes me noticeably less anxious in social situations which is amazing
biggest side effect is that — I already have a hard time sleeping — but this stuff makes it VERY difficult to sleep, like I’m tossing and turning till 3 am every night
I’m gonna let the PA know about this and maybe try out a different med

anyway, things are going well
I’m very excited to go to Sundance in January :D

October 3rd - Two weeks post-chemo
(happy Means Girls Day!)

I wish I had some good news to tell about feeling better
unfortunately I managed to get fucking sick (AGAIN*) and I feel fucking awful

just totally exhausted and icky
symptoms so far started with a runny nose, sore throat, and feeling freezing cold, then I got a bloody nose last night and I’ve been sneezing a bit with the occasional cough today
I think that’s it? anyway this fucking sucks; because of how god awful my immune system is, this cold is really kicking my fuckin ass

thankfully, now that the first two weeks post-chemo are over, this is when I’m actually going to begin recovering, and they said my WBC (white blood cell count) should be one of the first things to get back to normal, but in the meantime I’m gonna be crappy :(

*I think I forgot to talk about this before on this page, but somewhat early on in my chemo treatment (probably around May or June?) I got sick and it was HORRIBLE
my immune system was obviously dogshit and I seriously had that cold for a month straight before it passed
this time I should hopefully recover at least a little bit faster since my WBC will be picking up the whole time

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September 27th - 1 week post chemo

obviously I shouldn’t be feeling any different than normal yet because I normally get chemo every 2 weeks,
but I would like to note that this last chemo has been making me feel particularly strange

firstly, the sore achey feeling that I get started a good day or two earlier than it usually does, and it only seems to have stopped today, while hurting a lot more than usual

and then yesterday my back was insanely sore, like after standing for only an hour my spine felt like it was wrapped in barb wire, and that lasted all day
it’s not hurting right now, and I hope it doesn’t come back

and then I’ve been getting a lot more lightheaded and nauseous than usual
sometimes it feels like the anemia is back, but the feeling is tame compared to that and also passes quickly
but it does come in these waves throughout the day that feel somewhat concerning

brain fog is also kicking my fucking ass
I have to fight tooth and nail to focus on anything

I’m sure there’s other side effects I’m getting too that don’t come to mind right now, but that’s the gist of how my week has been so far

I really don’t think anyone could talk me into getting chemo again if the cancer were to ever come back, it’s just not worth it :/

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September 19th - LAST CHEMO! #12

by talos, it’s happening!

finally fuckin done, jesus fucking christ it’s been a long year

can’t wait to never do chemo again;
got one more PET scan in november just to make sure the cancer stays fucked off — followed by a few years worth of MRIs — then in like five years I believe I’m good :)

I rang the bell which was awkward, but ya know
that’s what having anxiety and hating the spotlight does to a mf
they gathered all the nurses along the walls of the hall, and walking down through them all was weird ig

but yeah, I’m more than happy to let ALLL this turn into a shitty memory
should probably start therapy soon, I think a care manager is gonna call me sometime next month
that’ll be fun :)

alright, I am unbelievably tired right now and done rambling
will update when it’s relevant — I’m gonna feel pretty shitty these next two weeks, because I always do after chemo, but then from there it should be smooth sailing

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September 5th - Chemo #11

these past two weeks have been hell for me
the chemo is continuing to take a significant toll on me and only gets worse with every treatment

I know this next month is going to be agonizing, but there is some relief in knowing this will be over soon

the migraines are getting worse, my emotional state is getting worse, I’ve started getting fucking chemo brain which is like ADHD 2.0
everything is hurting more and more, and I am just so fucking tired

I know this is fucked up to say, but if the lymphoma comes back, I think I’d rather let it kill me
the physical and emotional whiplash that 11 chemo treatments has put on my body and mind is not worth it — I’d rather die than spend another 6 months of my life feeling as awful as I’ve felt all year

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August 19th - Chemo #10

two more to go...

this is getting pretty awful

after both chemo #9 and #10 I started getting migraines that start about seven days in and dont end until the following chemo.
every day it starts tame but grown progressively worse over the day

the only thing that seems to help well is caffeine, if I have like 100mg in the morning, I'm usually good for the next 24 hours

another thing is my mental state is definitely deteriorating, in that about four days after chemo, going until about six days after (so the same time as when my skin feel all sore and achey), I find myself being incredibly irritable, depressed, and all-around emotionally vulnerable.

and lastly, I want my eyebrows back, I look fucking weird without them

one more month of this, and hopefully it should all be done

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August 5th - Chemo #9

only three sessions left!

here's hoping I can enjoy my favorite month (october) without any bullshit

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July 22nd - Chemo #8

entering my pensive wizard era

it just feels kinda silly at this point
like, the cancer is pretty much done, but I have to keep doing this chemo for another two months :/

I’m gonna keep doing this ofc, I don’t want this dumbass lymphoma ever coming back, but yeah this sucks

also, it looks like my hair is getting grayer which is kind of interesting, it’s losing its saturation and I think it looks kinda neat idk

the change is really subtle, like it’s not a big deal, but I think it’s interesting

oh and lastly, the achey pains I usually feel starting a couple days after chemo have started getting worse
it hurts more than it used to and lasts an extra day or two longer as well
I’m hoping it doesn’t get too bad, I still have another four sessions to go :/

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July 8th - Chemo #7

bleh, been feeling kinda crappy recently

it feels like the effects of chemo get worse the longer this goes on.
I’m glad it’s almost over because fuck I’m exhausted.

today wasn’t too bad. I saw the movie Bottle Rocket while getting chemo. also had some orange chicken :)

oh and for anyone wanting a hair update, yeah it’s really thinning the fuck out
it took a while but at this point you can clearly see my whole scalp through my hair.

probably won’t be too long before I’m lookin like Smeagol and will need to buzz it all off :p

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June 24th - Chemo #6

I am very happy to say that I am now halfway done with chemo!

we have twelve treatments planned, and so far it’s kind of sucked, but it feels really good knowing that it’s almost over, and — per my last pet scan, — that everything is going just about as good as possible.

getting chemo this time was fairly alright. it took a little bit longer than other times (I first got to the hospital around 9:00 in the morning and didn’t end up leaving until about 3:00 in the afternoon)
but I got two neat silver linings this time.

first thing is that I got this electric lunchbox that lets me take whatever hot food I want to chemo :)
before this, we’d just bring an electric kettle and make ramens, so it’s nice having more variety. I had a steak burrito from cafe rio.

and then the other thing that made this chemo very enjoyable was watching Hank Green’s new comedy special! it’s called Pissing Out Cancer and can be seen here on Dropout (or here on the YouTube channel)
Hank and I both have/had Hodgkin lymphoma, and watching all the videos he’s made talking about his experience with cancer has been incredibly cathartic for me as I’m going through this.
so of course I was super excited to watch this special while actually getting chemo, and of course I absolutely loved it!
It was so funny and sweet and really gave a voice to how I’ve felt with all of this, and doing it in a way that could make me laugh about it.
you’re awesome, Hank!

here’s a pic I took for proof that I was getting chemo while watching this, haha:

sorry I’m not in the photo, it felt weird for me to stand in it, so I’m just off to the side. my mom took the photo :)

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June 10th - Chemo #5

hope you’re all still having a happy pride month — mine is going pretty great :)

my cancer doctor (I think the correct term is "Oncologist", so I should probably call her that from now on,) has the good news that my cancer is responding very well to the chemo — which means it’s getting fucking obliterated :D

I know, I know, "pics or it didn’t happen"... here ya go:

(my brain, heart, kidneys, and bladder are all perfectly fine — don’t worry that they’re black)

she was surprised that the cancer in my bones left as fast as it did; that it usually takes a very long time to leave and can sometimes not even respond to chemo
like, as you can see in my first PET scan, there’s a LOT in my hip and thigh bones, so it’s awesome how — according to the offical scan report — quote: "Bones: Resolution of hypermetabolic activity at the L2 vertebral body, the RIGHT sacrum, LEFT ilium, and the LEFT hemipelvis, and LEFT femur."

"Resolution" in this context means ’complete lack of’, which is fucking awesome

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June 6th - Second PET Scan

happy pride month everyone!

so yesterday I had to do another keto diet
I had some cereal with almond milk for breakfast, some chicken and eggs for lunch, then I got this keto friendly pizza from Papa Murphy’s for dinner
not the best, but also not that bad

today was pretty chill, a lot like last time
they filled me with the radioactive sugar (this time through my fancy schmancy port) and lemme chill for like 45 minutes while I listened to some music (I love you Daisuke Tobari) after that I hung out in the giant donut, and I’ll get my skeleton selfie in a few days :)

oh and for anyone wondering how hair loss is going after 2 months of chemo, really not as bad as I was expecting!
I was expecting to get bald patches or something by this point and have to buzz it all off but yeah I pretty much still have all my hair which is kinda funny
like, the only way you’d know I’m going through chemo is if you saw my chemo port, because just by looking at me, I’m doing pretty great ngl - can’t wait for my chemo curls to come in haha

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May 28th - Chemo #4

which brings me to my last retrospective log before I’ll be writing new ones in the present

had to push #4 up to Tuesday because Monday was Memorial Day (future chemos are all scheduled for Mondays again)

my hemoglobin has now risen up to 11.1g/dL, so that’s cool

oh, and now that I’m done with my second cycle, my cancer doctor wants me to get another PET Scan to see the progress we’ve made and how the cancer is responding to the chemo

I have that scheduled for June 6th, so that’ll be fun

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May 13th - Chemo #3

same old, same old
it’s nice getting used to the pattern of chemo because it’s easier to prepare for everything and know what to expect

the side effects of my chemo regimen are kinda shitty, I made a separate page here to keep track of that stuff if you’re curious

and the lab tests before chemo this time said my hemoglobin is at 10.8, so whoop whoop

oh and, we pushed my chemo treatments so that it’s back to being on Mondays because I prefer them
it’s usually less busy, plus the receptionist at the oncology desk on Mondays is one of my neighbors and she’s super sweet

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May 9th

I actually came back two other times (on May 2nd and May 9th) just to do 2 additional lab tests with my blood so they can keep an eye on my hemoglobin

the awesome thing was that it continued to keep getting higher, very slowly, but it was improving — I was at 9.9g/dL at this point

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April 25th - Chemo #2

so we pushed my second chemo up to the following Thursday instead

again, same story, we do labs first, then a visit with my cancer doctor, than the actual treatment

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April 22nd - Blood Transfusion

so I was supposed to get chemo two weeks later on Monday the 22nd, but this whole time my hemoglobin had been getting lower and lower (which means I was anemic at this time) and instead of doing chemo #2, they instead gave me a blood transfusion, which was a pretty similar experience, just hanging out in a chair for several hours while blood (instead of chemo) slowly makes its way into me

afterwards, I felt fucking GREAT
my hemoglobin level raised from the lowest it’s ever been, 7.2g/dL, to a much better 9.7, and it really made a world of a difference for me

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April 8th - Chemo #1

three days later I started my first session of chemo

it’s pretty chill honestly
we (I pretty much always take my mom with me to chemo) first go to the Cancer building where they access my port and draw some blood for quick lab tests

then (leaving the port accessed), we walk over to a connected building where my cancer doctor’s office is and talk about all the stuff we need to talk about

then we walk back to the cancer building (on the way between buildings, there’s a vending machine and I’ll usually get myself a Salted Nut Roll or something, ‘cause they tasty) and then they’ll connect me to the IV machine and give me chemo

it’s a fairly boring few hours where I just hang out in the massage chair and wait for the drip IV to do its thing, but yeah, not too bad

and this is pretty much how every future chemo session goes too

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April 5th - Getting the port

another thing my cancer doc scheduled for me was a Chemo Port installation
if you don’t know what that is, it’s basically a small plastic device that is placed in my chest, just under the skin, there’s a tube that runs up over my collarbone and into into a vein that’s coming out of my heart

this thing makes getting IVs WAY easier, instead of digging around my arm trying to find the vain, you just make an easy peasy lil poke into the port and you’re done

because of this, it’s a VERY helpful thing to get when taking chemo because that’s a LOT of IVs I’m going to be having in the future (but even outside of chemo, it’s still super nice for when I get lab blood tests and whatnot)
I think I’m gonna keep the port even after I’m done with chemo, idk I just think it’s cool having fun cyborg shit in my body, plus I will need more IVs in the future and never want anyone goin’ pokin’ around my arm again

so anyway, on the 5th I got this surgery where they installed the port
they gave me one last arm IV to put some sleepy pain killer into my system so I obviously wouldn’t feel anything (I’m pretty sure they said it was low-grade fentanyl?! if so that’s kinda funny)
they had a lot of trouble finding the vein (again) so they did an ultrasound on my arm to find it easier

and, not to brag but, when I got the hospital bill for this surgery, my insurance payed for like multiple thousands of dollars on it, and all I had to pay was $80 — totally worth it

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April 3rd - More dental

oh yeah, and as for the dental stuff, after my ultrasound on the 2nd, I had an appointment with my dentist and he filled in all of the cavities on like half of my mouth
then the next day I came back on the third and he did the other half

(I’m not gonna make a whole log for this, but I came back one more time to get a dental cleaning on April 4th)

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April 2nd - Heart Ultrasound

my cancer doctor scheduled an ultrasound for my heart, just to make sure nothing was wrong with it (because I’m assuming that would be really bad) so on April 2nd I went in to get that checked out

my heart’s all good so no worries there
but my grandma came with me and took a bunch of embarrassing pictures

here’s the only one I like, because it was a little blurry which made it slightly aesthetically pleasing, so I added filters and shit for AESTHETIC:

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March 28th

this was the first day I actually got to meet my whole cancer care team

so first was the HIAYA Nurse Navigator, and she gave me a bunch of resources of support groups and events for young adults living with cancer

then there’s the financial coordinator, and I think her job was to make sure I was actually able to afford chemo treatment — not in like a threatening way, she just gave me some resources of charity houses and stuff that can financially assist people in my circumstances (again, I’m not too worried, my OOP Max is only $3k, and I have a lot of money saved up, and I can always borrow money from some close friends)

then I met my Cancer Doctor (if that’s an appropriate title?) who’s basically like a second PCP who’s going to be managing my whole cancer journey
and she’s also awesome! she ran down A LOT of info to me that day — the main important stuff was 1: how bad my cancer is
and here’s the PET Scan for the curious:

it’s normal to have a lot of sugar in your brain and bladder, so those two areas are normal, but all that shit in my underarm, all the shit on my lungs, and all the shit running down my spine, hips and thighs: cancer

oh also, my sibling made fan art of the PET Scan and it looks really fucking cool:

anyway, as I said earlier, it’s Stage IV (4) Classical Hodgkin lymphoma
thankfully, the doc said it’s easily treatable and even commonly curable

which brings me to the other highlight which is what my chemo plan’s going to be

so it’s 6 cycles (1 cycle = 4 weeks / 28 days) and two treatments per cycle (so I get chemo every 2 weeks for an expected ~6 months — hopefully it’ll be done by October)

the type of chemo regimen I’m on is the AVD + Nivolumab plan (if anyone is familiar with those two)

for those curious, I copy-pasted the exact regimen from my doctors notes, so here’s what I’m getting exactly:

Premeds:

• Dexamethasone 12 mg PO
• Aloxi 0.25 mg IP
• Emend 150mg IV

Regimen:

• Doxorubicin 25 mg/m2 IVP day 1 and 15
• Vinblastine 6mg/m2 IV day 1 and 15
• Dacarbazine 375mg/m2 IV day 1 and 15
• Nivolumab 240 mg IV day 1 and 15

Every 28 days for up to 6 cycles.

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March 22nd - PET Scan

Friday the 22nd was the day of my PET Scan

the day before, I had to go on a Keto diet (high protein, low carbs, low sugar) which honestly wasn’t too bad — like, the no solid foods diet I had to do earlier that month fucking sucked, but this diet wasn’t too bad

on Thursday the 21st, I had two eggs for breakfast, a small cup of grilled chicken for lunch at work (I work at a sandwich shop), and a nice steak I cooked myself for dinner — that was a LOT more protein/meat than I’m used to eating in a day, but thankfully the diet was just for the day

so anyway, the day of the PET Scan wasn’t too bad
the day of, I couldn’t eat food, only drink water, and I was basically just hanging out the whole time

like first they shoot that radioactive sugar stuff into my arm (my veins are pretty hard to find, that IV was NOT fun), then I just sit down and chill in this warm, dim room for like 45 minutes while the sugar is working its way through my body, then it’s onto the machine

it honestly was pretty chill, you just have to try moving as little as possible, which was kinda hard for my ADHD ass, but the scan came out pretty well thankfully (I wouldn’t see the scan result for like another week tho - you can see it in the next log)

it wasn’t too noisy either which was nice, and they let me wear a nice, warm blanket
yeah, I just laid there for like half an hour or so and then I was good to go

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March 14th

as you already know, it’s bad
she told me I had Hodgkin lymphoma (soon after I would find out it’s exactly Stage IV (4) Classical Hodgkin lymphoma) — which is apparently a fairly common kind of cancer for people my age (I’m 21, btw)

anyway, it’s kind of hard to describe exactly how I was feeling at this time, but I remember feeling — and this was also written by down by her in the doctor’s notes — a strong sense of calmness (she wrote that I looked very calm and didn’t seem to be in distress which is an interesting thing to see written about you in a doctor’s note)

I’ve spent such a long time with these issues, and to finally understand what the problem is, as well as (hopefully) have a solution for it all… like yeah, it sucks to have cancer, I know that it’s bad news, but in this case, it’s better than no news

so she scheduled a PET Scan for me (where they scan your body to see where the cancer is, kinda like an x-ray but focusing on tissue instead of bones), as well as set up a cancer team that thankfully is much closer to where I live (the team includes, my primary Cancer Doctor, her nurse assistant, a financial coordinator (I think that’s what she’s called?), and a HAIYA Nurse Navigator)

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March 13th

the next day, my PCP calls me and tells me she got the results back from the biopsy and would like for me to come in to her office tomorrow to talk about the results

her tone sounded kind of concerning, plus the fact she wouldn’t just tell me the results over the phone, AND she said she wanted someone to accompany me so I wouldn’t be there alone

like jesus, how bad could it be haha

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March 12th

the next day, my grandma and I drove down to meet my PCP in person, and yeah she’s great, I’m super happy to have someone as kind and empathetic as her to help me out

but, funny story, my grandma donated blood that morning and straight up passed out while sitting in her chair next to me in my PCP’s office, so we had to end our meeting early to take her to InstaCare (which was just 2 floors down on the lobby floor)

don’t worry, she’s perfectly okay, but yeah it was kinda scary for a minute

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March 11th

so sometime in the days leading up to this, I FINALLY got a PCP (Primary Care Physician)
the only unfortunate thing is that her office is like a half hour-drive away, but other than that, she’s awesome

at this point I hadn’t yet met her in person, but she was actually really understanding of my situation and decided the best thing for me to do right now is get a biopsy, so we got that scheduled over the phone and on the 11th I had it done

it started out the same as the ultrasound, they do the jelly and the scanner to see where everything is, then they numbed up my underarm and started extracting tissue (gross! but also kinda cool!)

it takes a few days to get results back from the lab, and I was just hoping this would finally give me the answers

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March 9th

but still, the week sucked
no solid foods, so all I ate was oatmeal and mashed potatoes

I got so many fucking cravings, like I never wanted to eat fried chicken more in my life, so on the 6th I pre-ordered a family size platter of chicken fingers from this really good place down the road and on the 9th I picked it up, drove home and indulged in culinary euphoria

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March 1st

I get my wisdom teeth removed on this day
I think I was pretty lucky — my face never puffed up, there was little to no pain in my mouth (they gave me a painkiller injected into my mouth that lasts like a week)
and I thankfully never got dry socket ’cause I was extremely careful to follow everything they said to do

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February 22nd

now this isn’t really related to the cancer but i just feel like including this because it was a totally separate but also memorable medical situation I was going through at the same time

when I got health insurance, I also got dental and decided to actually see a dentist for the first time in years and have him check me out

so on this day I got a check up
he did the X-ray and inspected my teeth, and said that I had 4 wisdom teeth that needed to come out soon before he could drill n fill the 20-something cavities I had in my mouth

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February 20th

that morning I had my second PT appointment
not much changed, she pretty much was just checking up to make sure everything was going alright, which it was

I didn’t schedule a third appointment with her because I felt like it was only a matter of time before it would all be fully healed

then I went to work, and left early to make it to my ultrasound appointment which was later that day

and you know the drill, they rubbed jelly shit on my armpit and rubbed the scanner thing around to take a look at muh nodes

I wish something helpful came of that ultrasound, but it honestly didn’t really give me any answers over what was going on

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February 15th

did my first physical therapy appointment, and my therapist was fucking awesome

she showed me a variety of exercises and posture adjustments that are designed to take pressure off the sciatic nerve (I never had sciatica, but looking back, I’m pretty sure the cancer was fucking up the nerve in some way)

and yeah it actually worked super well
most of the pain went away and I was actually able to get through the day without needing Ibuprofen (I’d still take it to sleep tho)

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February 8th

I finally decided to go to the doctor
I just went to general InstaCare (which is not as urgent as the ER, they just appoint you to a doctor and have them check you out), and when I met whichever doctor helped me, I told him about the chronic back pain and enlarged lymph nodes

he forwarded me to a physical therapist for my back, and to get an ultrasound to check out my lymph nodes

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January 28th

me being the cinephile piece of shit I am, decided to postpone going to the doctor until February and somehow make it through 9 days of Sundance with chronic back pain

no regrets, honestly — I saw one of my new favorite movies twice at Sundance
but yeah in retrospect, it was kinda fucked up (considering I literally had cancer haha)

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January 14th, 2024

I FINALLY got myself health insurance for the first time
I got it like a day before the Open Enrollment period ended, so thankfully I just barely made it

also, I got a really damn good insurance plan — the base premium was like $300 a month, but my tax credit covers like 90% of it so it’s really affordable on my end + my Out-of-Pocket Maximum is only $3k which is fucking awesome

also sometime in early January I started experiencing a lot of pain under my right armpit, and the lymph nodes in there were fairly enlarged

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September, 2023

The back pain continued to get worse, both in intensity and in frequency
the pain would come and go, thankfully I never had to deal with any pain when I went to New York in August for a wedding

but around this time, the pain became so bad I decided to buy a bottle of ibuprofen and began using the product
I’m a little ashamed to say I took a fairly unhealthy amount of that stuff over a fairly long period of time, but I literally could not get through the day without it

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June, 2023

I started noticing extreme pain in my lower back starting sometime in June
I don’t know exactly when it started but it was most likely within that month

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