#my mom needs an mri for a possible brain tumor

[superanimepirate]

Can today just end already dear lord

[bloomingonionbitch]

Since we're sharing P!ATD stories...buckle up!

I'm originally from the Chicago suburbs (which is also an annoying personality trait) and I was 13 years old, heavily layering tank tops from Kohl's over v-neck shirts.

It's May 2008 and me and these two super cool older girls from Elmhurst (whom I met at Fine Arts Camp @ Saint Mary's College in South Bend, Indiana) went to Honda Civic Tour at the Congress Theatre in Chicago (RIP).

It was my first concert *ever* and I cannot believe how lucky I was to have it filmed. I got that hideous beige/brown Pretty.Odd sweatshirt (see attached for example) and wore it over everything because I believed I had hypohidrosis (spoiler: it was all the layered tank tops from Kohl's).

Motion City Soundtrack, Phantom Planet, and The Hush Sound were incredible openers and I have yet to have a more satisfying line up. BUT. It was at the concert that I had my first seizure! Rewind a second!

I grew up on Neopets and Flash Games and supported my friends who were really good at drawing Sonic the Hedgehog. I was on the computer *a lot.* So when the fingers in my left hand were going numb, it was dismissed as carpal tunnel - easy enough.

Now fast forward to me being such an amped up, cradle Catholic, Peggy Hill-footed teenager. I'm in ecstasy, feeling like the true Fueled By Ramen ™ teen that I knew I was inside. I'm sweaty, I'm scrunched against other people, I'm having an awakening!!!

But then my fingers go number and half of my face does too and I'm thinking it's adrenaline and hormones and Jon Walker - so I keep going. It eventually subsides, then happens again a few days later, and again, and again...for months.

Scooch ahead a little more - my mom advocates for an MRI and we get one, a then few weeks pass.

After going to ~LINCOLNSHIRE~ with my grandma and mom to see "Mama Mia" (on the day before I am set to start *THE* 8th grade), we get a call from my pediatrician that I need to go to the hospital ASAP. Turns out I have a "goober" in my brain and a "goober" is what you call a tumor when you're explaining it to a kid you helped bring into this world. Shout out to the emotional labor of doctors, for real.

I can do a "House"-style medical breakdown later and talk about my surgery/proton radiation, BUT I would much rather talk about all of my Make-A-Wish trip ideas, ripped straight outta 2008!!!

1. Visit the set of "Project Runway" and hang out with Tim Gunn.

2. A pink digital camera - literally, that was it. And you know the one I'm talking about. My Wish Granters were like....you can probably get that on your own sweetie...

3. Be on an episode of TAI TV (remember that!?) If you must know, I had big dumb crushes on Ryland and Sisky.

4. Meet Katy Perry??? (I don't know what we would have talked about or done together...I knew nothing about anything).

5. American Eage shopping spree (in retrospect, their clothes never really fit right and I only wanted to recreate the high of wearing a lace cami under a turquoise henley sweater with a pink skinny scarf at my first middle school dance - it was as much of a "Laguna Beach" moment as I could have).

- Meet Jon Walker - not all of Panic! just Jon. WILD!!!!! Imagine!!!

Dear reader...do you want to know what I chose?

A trip to Turks and Caicos! A place I had never heard of! I got my period for the first time and we could only find cardboard, "old-school" tampons and I was FREAKING OUT. I also got a wicked sunburn (Trileptal folks!) and got sick on an unlimited supply of Boursin whipped cheese spread. Two of my brothers are redheads who do not like the beach! They were so fussy! Turks and Caicos is a lot of beach!

Please please believe me, I am unbelievably thankful for my wish (and health and life and time) and the Granting team, but have any other Make-A-Wish kids spent time thinking about alllllll the other wish possibilities?

I'm not even talking about reflecting back and considering more "practical" (which is bananas to say considering the context), but just like how my interests have changed?

In high school (and probably now, too), I was kicking myself for not using my wish to meet Jason Segel? I still have a massive crush on him, but imagine them calling him up to meet a random kid who picked him as her Make-A-Wish? (This was pre "End of the Tour" and "Muppets" for him - it only was "How I Met Your Mother" and "Freaks and Geeks" for him).

I'm 15 years in remission and doing just fine! I haven't talked about (or processed) personal health stuff very much, so thanks for letting me take a moment from reblogging transparent Snoopy sticker scans and Nora Ephron film stills to reflect on the end of an era.

[the-light-finds-its-way]

Man, I'm having one hell of a night. But O14 is making it MUCH more bearable. Do y'all mind if I rant here for a moment? I'm sorry, I just feel like I need to rant.

So my mom's friend might die tonight. She's very autistic, and has very poor communication skills. So basically, she couldn't communicate well that her spine was hurting her, to the hospitals. She went 2 times in 4 months to the hospital for it, and they did MRIs and everything, catching nothing.

Well today, without telling next of kin, without telling her primary caretaker, without telling her sisters, my mom's friend was taken to the hospital, then transferred 45 minutes away with not a word spoken, texted, called, anything. An abscess in her spine exploded, caused blood poisoning, and she is going in for emergency surgery, but not for another several days. The only reason it was caught was because of a very specific test that the hospital did. Now, the sisters are with the friend, but they're going to possibly sue the hospitals for... well... I guess everything.

And if the friend survives, there's a good chance she will never walk again. She currently can't move one leg she has. She's suffering. She's been suffering. For months.

And on top of that, the friend couldn't communicate this, and her sisters (who are absolute assholes that don't give a shit and said they hope she dies), didn't communicate to my mom that the friend has a brain tumor.

My grandma currently has stage 4 brain cancer as well.

I feel like it's that dark time of my life when I lost everyone to Covid and cancer (2018-2021) and I barely made it out alive myself, thinking life wasn't worth it at all. But I made it. I lived, and I will keep living for those who can't. If my mom's friend can't make it, when my grandma can't make it, I will. For them. I'll keep fighting. For them.

Again, sorry for the rant. I just am exhausted mentally. My mind is tired. I'm drowning in comfort food and drink (hot chocolate this time, not mead thankfully), and I just... ugh. I'm definitely treating myself to pieces of my suit of armor tonight. Hands down, I deserve it.

[wanderinglotus7]

Ladies & Gentlemen, We Have An ANSWER

Good news & bad news, I received an answer for most of my health issues I've been experiencing for the past 2.5 years. I met with Dr. Sivanandy last Wednesday to discuss my results from a MRI scan I did about two weekends ago. Nobody wants to hear this, but it could be worse...the scan showed that I have a tiny tumor on my pituitary gland. It's called a pituitary adenoma which is a slow-growing tumor of the pituitary gland that isn't cancer and often doesn't spread beyond the brain. Some pituitary adenomas cause symptoms by making too much of one or more hormones. So, this tiny tumor is the cause for my body producing extra cortisol (the stress hormone) and possibly contributing to my PCOS symptoms. My best treatment option is surgery.

Before everything got this far, I had an inkling that I was probably gonna have to get surgery after the first time Dr. S was discussing other possible diagnosis that could be disrupting my body's hormone production. I'm glad it's not my kidneys because that would be a whole different conversation. The next step is having a consultation with a specialized pituitary team to discuss the procedure like the pros & cons and recovery is gonna look like. Because I don't have anyone around close to help me if I need the extra help once I get discharged from the hospital. I ended up feeling overwhelmed, not just from this news, but the entire day was overwhelming because my workday ended up being thrown off by lots of other things that unexpectedly happened. This was just icing on the cake. I told my mom, my dad, and my Grandmother. I told my brother yesterday.

This is really weird for me because I really don't share with other people my business often especially when it comes to my physical health. So, my mom wanting me to call this person and that person doesn't sit well with me. In addition, I still need time to process this new reality for myself. When I came home on Wednesday, I just didn't want to talk to anyone, and I believe I went to bed early. I was tired but tired from the week anyway. Some days I find myself repeating in my head that "I have a tumor". It's true, I do. I'm blessed that the tumor isn't cancer and that it's not bigger than what it is. Once the tumor is removed, I hope this means that everything else I want in my life will still be a high possibility for me. No more excess facial hair. No more irregular periods. Less challenging when it comes to losing weight. This is another reason why I haven't left BIDMC because of all the specialty care that I'm in need of resides within the BILH healthcare system.

For some people, learning that she/he has a tumor (cancer or not) would mean doomsday. However, I don't see it that way. This isn't my moment of realizing that I need to live life to the fullest. Actually, I've been living my life to the fullest at different periods in my life. God forbid something were to happen to me, I think I would be satisfied with the life I'm currently living. It would just suck that my first romantic relationship would be me my last relationship. I want more or better when it comes to my romantic relationships. I was able to attend my top choices of colleges. I obtained the highest degree for myself. I've been to Southeast Asia and Central America. I wrote a poetry book. I entered my first poetry chapbook contest. I moved away from home and lived/living in two major cities (Bangkok and Boston). I have a job working in the Anti-trafficking field which I always envisioned for myself. I still have some of my family and friends in my life. I'm going to be doing more domestic traveling. I'm still open to love. My mental, spiritual, and physical well-being is pretty much okay. I have the peace and stability I prayed for. I'm enjoying living a simple slow-paced life!

[vtforpedro]

LONG POST, medical update. ptsd, suicide TW: I’m really tired. I feel like I’ve been saying that for a year but I am exhausted. mind, body and soul exhausted my head got better after I lost the water weight my chemo pill was packing on (I was 15lbs lighter than the three weeks previously. so it was pretty bad lol) but now it’s getting bad again. it never gets to the point of relief, but it gets manageable and now it’s becoming unmanageable again. it’s not water weight but it might be cause I’ve put on a couple pounds over the holidays (just barely a couple pounds, I’m eating much lighter in general) anyway I don’t see the point of being scared to name what it is my neurosurgeon and I believe this is anymore. my psychiatrist thinks it makes sense, my pcp, even the ER doctor I saw on dec. 2nd lol but I am 99.9% sure this is what I have and it does makes sense but every fucking time I think about it for a while it makes me so angry. so so so angry y’all. I wish I could sit every single medical professional I interacted with over the last year or so who didn’t believe me and tell them it’s all been real, they failed me to such a degree I have ptsd and anger problems that I’m going to need therapy for, and tell them to learn how to be better providers. blegh so I saw my neurosurgeon (one of the best in the country) for the first time in april. his thoughts? anxiety with muscle tension in my back and neck that led to tension in my head. as in the muscles around my bones, not inside of my skull. didn’t listen to me or believe me, thought all my crazy symptoms were just anxiety and possibly the chiari malformation but there’s no treatment for that beyond surgery and mine is so mild no one wants to go that route (me most of all lmao) I put off seeing him again because I saw different neurologists and my PCP over the months who basically all said the same thing. like my PCP believed me and gave me referrals to the neuros, but one told me to ‘stop worrying about this and just enjoy life’ and the other sat with me for an hour, the first half of which she was all on board the ‘anxiety is fucking with you, none of this is real’ train until I had to tell her to LISTEN TO MY SYMPTOMS firmly enough that she did. she went the opposite way then and said yeah ok something ‘mechanical’ is happening, you need to go back to a neurosurgeon. turned out she loves the neurosurgeon I saw in april (worship the ground he walks on, were her words) but told me maybe I still needed a second opinion. she did also mention that I’ve been living with this for so long that I’m ‘married to it now’ which still implies I’m making it worse than it actually is but :) whatever, she couldn’t think of what it could be decided to just go back to that neurosurgeon and tell him the physical therapy he prescribed in april I had to stop because it made things worse. his PA tried to prescribe me more PT on the phone before I firmly told her I needed to SPEAK with him face to face because my quality of life is gone, because I get close to killing myself weekly because of how bad this is and nothing has improved since april. only gotten worse. so I had my appt with him in late October I think? I explained all of my symptoms (again) and told him how nothing has changed, things have gotten worse, when I do x y z I have an episode, etc etc. he said he still doesn’t think it’s the chiari but he said it *might* be IIH idiopathic intracranial hypertension first time I’ve ever heard of it and even though it was over 11 months into this, it might just save my life now that I have idiopathic = we don’t fucking know why this happens, intracranial = HAPPENING IN MY SKULL AND BRAIN, hypertension = technically high blood pressure, but for here just high pressure cause my BP is good it is rare, it is unknown why people get it and why others don’t, it is most common in women of child bearing age who are obese. the thought is that the weight on the body causes the brain to very slightly inflate, decreasing spinal fluid flow and increasing pressure in the brain, sometimes CAUSING a chiari malformation to appear, which can cause other symptoms on top of IIH it used to be called pseudotumor cerebri because IIH makes the brain behave like it has a tumor while no tumor is actually present (which means normal MRI/CT scans and the main reason everyone told me I was faking it) I gained 80lbs in less than two years due to severe depression and ptsd. I’ve been at the same weight for almost two years now and was at that weight in Feb 2019 before things started happening in Dec 2019. sometimes it does just come on one day. it can be chronic, it can randomly go into remission and come back, and they have no idea why it even happens. it’s rare enough that no neurologist I saw could even think of it. rare enough that one of the best neurosurgeons in the country didn’t think of it until he decided he believed me lol he leans even more heavily into this because I gained weight so quickly (one of the hallmarks of getting IIH) and I had not a single symptom like it before the weight gain I don’t trust anything or anyone right now and I am extremely pessimistic and have no hope. but the one thing that’s given me a little hope, that’s made me believe this is what I have, is the fucking wikipedia page on IIH. it lists one specific symptom that I’ve seen nowhere else (and is EXTREMELY specific lmao) that I have and that everyone thought I was crazy explaining. beyond destroying your quality of life, the one thing IIH can do is cause permanent blindness. I’ve had a fuck ton of problems with my vision since this all started happening. one of the worst is that if I’m in the middle of an episode and I look up or to the left, it makes it h u r t and makes the episode worse. which is on the wikipedia page! which explains why I couldn’t fucking do EMDR therapy which involves rapid eye movement from side to side :) :) :) even my therapist was thinking this was all in my head and I was just letting my anxiety tell me EMDR would send my head into an episode instead of it actually happening lmaaaao god I am so angry y’all my mom and my uncle The Doctor wanted to commit me in March/April. I had an entire ER nurses station mock me for ten minutes for coming in repeatedly and having bizarre symptoms that, because they were unexplained, they thought I was faking. they belittled me when talking to me. one put the tv remote (no tv in the room) instead of the call button in my hand when I was too out of it to notice. the ER doctor that day told me I was making up a story, none of this was real, and to continue seeing my psychiatrist. I went home that day, told my mom I was fine for her to go back to work (she was angry with me and wanted me to go to a psychiatric hospital), took a shower and planned on swallowing a bottle of pills. I was in agony, utter agony, every single day multiple times a day I thought I was going to die, and it was being made clear to me that no one, not even my mom, believed me. I told my best friend and she talked me out of it, but I came very close and I will forever be heartbroken and angry beyond belief about this (my mom came around not long after this after seeing that this wasn’t going away and has thoroughly apologized for wanting to commit me. she has been helping me every single day since this started even tho she thought it was anxiety. I’m angry but I don’t hold it against her, not after the incredible sacrifices she’s made for me for a year) so yeah. every bizarre symptom, every agonizing thing I go through, the weird discomfort, pain and burning, vision problems, etc etc, all explained by IIH. the very specific ‘looking in a certain direction makes it worse’ has been there since day one. it’s because pressure has increased on the nerve behind my eyes so looking in a certain way aggravates the affected nerve further gaining all that water weight and having my head get so so so severe, enough to send me to the ER again, made me also think this was a real possibility and the ER doc agreed that the fluid retention was making pressure in my brain even more severe and it did ease quite a lot once that was all gone, another reason I believe this is IIH if you read up on IIH or read stories by people with it, it is life altering, debilitating, and agonizing to live with. most people will also have the same story of doctors not believing them and saying it was anxiety before getting this diagnosis the good thing? there’s a cure and while some people may need additional help later on, it works for most people. and it is, very simply, losing weight. 10-20% of body weight (some places say relief can start at just 3%) seems to completely cure it for most people because the brain is no longer inflated and because of that, any chiari malformation (cerebral tonsils sitting in the spinal cord opening) will actually go away, because it makes room in the skull for the tonsils to go back to their normal place I have some trouble knowing that I am partially at fault for gaining weight like I did, but my mom keeps telling me it’s so rare and how could I have possibly known and it was after severe trauma so. trying to deal with that too lol but yeah! weight loss journey. my chemo pill, if you read my last update, completely fucked me up for a while (including the fuckin weight gain despite a low calorie, low fat diet since like nov 1st) so it’s made it hard to lose weight. but now that I’m off of that pill, I’m down 7lbs and I will continue to lose. I have never been more motivated in my life to lose weight lmao and I’ve successfully done it before! I can’t exercise but my neurosurgeon said as the weight comes off and my symptoms start getting better, I will probably be able to incorporate more movement in my life. I can’t even walk around my apt for too long right now cause it builds pressure in my brain. it fucking sucks because this is something they don’t understand, it’s really only diagnosed if everything else has been ruled out (and with a lumbar puncture, but I am too fucking traumatized to have that done. but if I showed high pressure with no reason for it, it would be an ‘official’ IIH diagnosis). but I’m choosing not to do the LP because if I start to have my symptoms relieved as I lose weight, it’s pretty obvious that’s what this has been from the start my brain thinks it has a brain tumor and is going absolutely batshit insane and no matter how much I tried to get people to believe me, it took 11 months to get there. I will carry this with me for the rest of my life and once covid eases, I’m finding a good trauma therapist and working through this if my symptoms DON’T ease, we’ll talk brain surgery. but I think this is what I have and I think I’ll be okay when I lose enough weight (and I’ll feel better all around lol) anyway I’ve had an extremely bad couple of months and I wanted to get this off my chest, sorry it’s so long. if you can please, please, please cross your fingers for me and wish me luck that this is what it is and that over the next handful of months I lose the weight and get my life back, I will appreciate it more than I can say I’m going to thank all of you ahead of time because I lack spoons to reply right now and I also want to thank you all for your support over this last year and never doubting me. for always offering me words of encouragement and for being angry on my behalf. thank you thank you thank you I love you all <3

[icantbraintoday-tryagainlater]

You are Expendable

You are a hard working individual Pride yourself on your work You show up early and stay late You never miss a meeting or an email “We are lucky to have you, You are such a great asset to the team. With everything you do, to show our gratitude We will fire you without question.” You work hard every day Put your heart and soul into the job You encourage your coworkers, teammates Take that overtime and bust your ass You don’t sleep, you think of what You can do better tomorrow Yet you are expendable. Your job does not need you You will be replaced by the end of the day. Your job does not value you, You are a commodity that can be replaced. Your skill is teachable, Your knowledge is common. The truth is you are expendable And they’ll replace you for their financial gain.

~*~*~*~*~*~

I should have known from the 1st day of training my job as a claim associate for a Big Name National Insurance Company that I would regret my decision to apply.

I should have known when within two days of training I was pulled to the side and written up. For my neighbor talking to me.

I should have known.

So this is all on me, I know, but I thought that this company would treat me right and it was only these two bitter old employees who were about to retire.

I was wrong. I was so wrong.

the first year was amazing! I met new friends, I was great at my job, I had the best manager in the world! I was surprised that I could like working in Insurance. I was being talked to about advancement, different areas of the company I would excel at, and the right path to follow to achieve my goals.

Then She came along. Covid hit, we were all sent home, and a brand new manager took over my team. I didn’t think much of it, because honestly? She seemed fine. She was new to managing, but not new to the job. My biggest critique then had just been how much time she seemed to take off. She was NEVER there. Every other day she was taking a partial day. She took long weekends, took weeks off at a time. It was weird to say the least. 

But then the snippy emails came. The bitchy remarks.

My team suffered GREATLY. We went from being one of the top performing teams to suddenly being at the bottom. And all of these Outliers Reports that we had never heard of started becoming this huge deal.

Literally never heard of these reports, and then one week we were all on them. And it was a BIG DEAL (TM). Then we were getting in trouble for being in the wrong call states (the call states we have been told to be in for specific situations since we were trained were suddenly the wrong call states).

All of this I was willing to just deal with. But then...

Then my mom got sick. I got a call from my father at around 1 or 2PM Thursday, November 19, 2020. My mom was going to the ER because they thought she was having a stroke. I told my boss I couldn’t be at work and left for the day. Found out that it was a tumor, possibly cancer. Within 2 weeks she was in surgery to remove the mass and we found out it was Glioblastoma. The worst brain cancer.

And my friends and family kept asking “Is your work understanding? Being accommodating?” And I couldn’t say they were. They were the complete opposite of understanding.

I fought for a while to make them understand and to just ask for simple accommodations only to be met with “If you can’t do your job then go home.”

Below is a letter I wrote to HR.

“To whom it may concern,

My name is ______, and I work as a claims representative in the Auto Property Claims, Express. I am writing to you today to bring up some issues I have recently run into with the way Express is run, and I would like to discuss these with you and hopefully find a solution so if someone else is ever in my position, they are treated better.

Specifically, I would like to discuss how I was treated when I found out my mother was diagnosed with brain cancer.

I received a call on my first break on Thursday, November 19th, from my father. He told me that my mother was on her way to the ER. I immediately IM’d my manager, *blacked out*, and requested to leave, as my father cannot take care of my mother alone since he is blind. She simply said that she logged me out, and I did not think anything of her short reply.

I came back to work on Monday, November 23rd, because I had no more PTO, despite still waiting for my mother’s MRIs to come back with the official diagnosis. She was diagnosed with a cancerous tumor on her brain.  I could not afford to take time off (and also welcomed a distraction), but knew I would not be much help on phones, so I asked for tasks and waited 40 minutes for a response.  However, She simply stated that it wasn't possible for me to do other tasks - that either I could answer calls and talk to customers while in crisis and crying or miss work and not get paid.

I understand there are rules and managers cannot change our schedules on a whim; however, it felt crass that she would not even discuss an alternative. In the past I know that myself and others have been given courtesy during extreme circumstances, so I had spoken with another team manager about it, and he told me he would speak with Jessica for me.

Right before close, however, I received a very snippy IM from Her stating the following: “Just so you know, I had spoken with my boss, *blocked*, about this. And she said we couldn’t do that. And you were logged out for 40 minutes earlier today so I took the liberty of changing your T2 for that as an Unscheduled PTO.”

Those 40 minutes were while I was waiting for her response and trying to get myself together after learning horribly devastating news. I also felt very attacked and that if I were to do anything that she did not like from now on that she would retaliate against me. I still feel as though she will retaliate against me just because I went to another manager with an issue that she did not appear to care about at all. 

She has also consistently been lacking in manager experience, as well. The most prominent example of this is that she will not (or possibly does not know how to) help with personal development, either within the company nor in my current job position. When she brings up any areas where I could do better, she simply tells me “do better,” and when I ask for advice on how to go about doing so because I feel as though I am doing all I can she simply tells me again “do better." I can provide examples if you would like.

I attempted to speak about this with HR, but they simply asked why I was upset that my manager was asking me to do my job. I felt isolated afterwards, and felt as though Big National Insurance Company in general does not care about their employees in the least. Our motto is Remarkable. But my experience during this tragic time of learning that my mother might not just have brain cancer, but may never regain control or strength of her left side (her dominant side) ever again, coupled with the fact that my father only went blind 3 years ago so I now have 2 disabled parents whom I may need to start taking care of on a regular basis, has been anything but remarkable

I was told to get CIGNA to look into ADA accommodations. However, I needed the accommodation immediately, and CIGNA can take weeks, if not months, to get established. In that moment I needed to know that I could do my job while also helping my family through this horribly difficult time, and I was told to jump through hoops like a circus animal and maybe I would still have a job after, but probably would not be paid for the time off. I could apply for the Employee Grant, but that’s not a guarantee, and I have to apply for it after I’ve already lost the pay. As I’m living paycheck to paycheck right now, that would mean I would probably be facing eviction by the time I would receive any assistance. 

Accommodations were simply thrown out the window and when my friends ask how I’m doing and if my job is being understanding, I cannot say that they are. Between the points system, which punishes you for being ill or having to care for family, and my boss’s cold, indifferent, and unsympathetic attitude towards me, I feel as though I am literally just a number, an expendable employee who is simply there to be a robot. 

As I stated at the beginning of this email, I would love the chance to discuss this with you to find a solution. So if anyone else is ever put in this position, they are treated with dignity, respect, and sympathy, rather than cold, unfeeling retaliation and robotic responses. So future employees do not have to jump through hoops in order to have simple and understandable accommodations made as they work on getting the rest lined up.

You can reach me at this email, my personal email *blocked*, or through text or calls at my cell number *blocked*. 

Thank you for your time and I hope to hear from you soon.

Sincerely,

*my name*

We had a lovely conversation with my boss, her boss, and a new HR rep. But did anything change? No. If anything, I started getting micromanaged even more.

There is so much more to the story than this, but I - I just don’t have the time or energy to type it up.

Maybe I will another day.

But in conclusion - I should have known. Shame on me for allowing myself to be fooled.

[tophsbiggestfan]

ahaha remember when i was like “hey! might be a while before i post any of my fanfics bc my boyfriend broke up with me? well, we’ve stayed actually really good friends and I was actually feeling a lot happier the past couple days and getting ready to open up my WIPs again. 

but then he started getting horrible headaches and realized there was a problem in his vision. so i drove him to the eye doctor who said he has papilledema and he needed to go to the emergency room immediately. 

papilledema is a swelling around the optic nerve. there’s a lot of possible reasons why there’s extra pressure in the brain and they range from high blood pressure to a brain tumor to no actual cause. 

he wouldn’t let me go in the emergency room with him so im just sitting at my friends house and waiting for his MRI to come back which will essentially tell us if it’s something horrible or if it can be fixed with just medication and better diet/exercise. 

his parents are on their way here (our university is five hours away from his hometown) and i’m just dreading it because his mom is the reason we broke up (she misinterpreted something i asked her once as being rude and has hated me ever since then to the point where she stopped talking to J because we were still dating and he ended up breaking up with me for it which is a whole other story) and I know once they’re here, there will be no chance for me to see him for days and they might even make him go back to their hometown if its something very wrong and I wont get to see him for so long. 

i’m just really in love with this kid and i know he loves me too. i can’t even stand the idea of not being able to see him while his parents are here, let alone if he has to go back to his home town, let alone if whatever is causing it turns out to be lethal. 

i know it sounds stupid but he drove to bring me a bottle of coke last night because i asked him to and that’s all i can keep thinking about. i just want him to be okay. he’s 21. please let him be okay. 

[offansandflames]

So it was requested that I redo my brain MRI to check up on the tumor.

Reasons why I should not be nervous about getting my tumor scanned:

1. The immune issues I’m experiencing now are highly unlikely to be related to it. 2. My headaches are milder than they’ve been in over ten years. 3. This is just a routine check-up. 4. The tumor has not grown since ‘15.

Reasons why I’m nervous about it:

1. It reminds me of what was going on last time I had scans, and it’s hard to stop thinking about it.

I do my best to remember it in a positive light, knowing that it made me stronger and more empathetic. But I’m also scared of returning to those times. The tumor inexplicably stopped secreting and growing, but it’s possible it could start again. I realize that my issues with anxiety are influencing my thoughts. I need to be aware of that bias when I assess this situation.

My one of my nurse’s mom just died this morning. I went into the office to check on him, and he was just rolling throughout his day because there were so many patients who needed things. He said that he wouldn’t think about it because he wasn’t in Kenya with them right now. There’s nothing he could do about the situation from here, only after his flight leaves tomorrow. This dude is strong, and it reminds me that I used to be tougher like that. Maybe good luck made me soft.

I know logically that experiencing this anxiety doesn’t make me a weak person, but I can’t stop feeling frustrated with myself. The most I can do is to channel whatever strength I have and remember that at the end of the day, I’m that same person I’ve always been.

[thewrongjackpot]

Pidgeot used Whirlwind

Last few days have completely spun me around. I had my third round of chemo this past Thursday, and that in itself went fine. Afterwards, much else started to take a different turn. First of all, there were issues with my re-feeding because I went essentially from eating barley 400 calories a day (if that) to working up over three days to about 2200 calories in a full day. My labs showed some issues with my electrolytes and a couple other things. I had to drop my feeding to almost a fourth of that, and had to go back in for labs on Sunday. 

Sunday is where things get… interesting. I went in for labs, which should have been a 20 minute visit, and we could head back home. I brought up with the nurse that the area surrounding my PICC line looked a little red and there seemed to be some kind of white gook around the catheter. They thought it looked questionable too. So I had to have blood cultures and cultures of the entry site taken. Thinking it could be some kind of infection, I had to go down to the ER for it to be evaluated. What came of it was that more blood had to be drawn, and my PICC line had to get pulled. YUP. I had this thing for barely three weeks. I have absolutely no idea how this even happened, but my line was pulled. UGH. I was and still extremely frustrated that I have to get another one placed because I still can’t be sedated because it’s still not safe (more fun expansion on that to come). Getting the PICC placed sucked. SUCKED HARD. Next, we had to wait to see if I could just go home with some antibiotics or if I had to be admitted. And just my luck, on SUPERBOWL SUNDAY, may I add, I had to be admitted when we already had Superbowl plans because we’re still normal Americans. 

So I mainly had to be admitted because they needed to administer antibiotics by IV, which they had to throw one into my arm because bye bye PICC line. They also needed to watch for fevers for me because I ran one in the ER, and I ran one that night. Initially I was supposed to be admitted only until Tuesday so long as I no longer had a fever for more than 24 hours (which I didn’t), and my cultures came back clear for 48 hours (which they did). 

BUT NO, apparently with me, it’s never been that simple lately. Life has been loving throwing some curveballs. I saw my main doctor on Monday, and we talked (well mainly she talked, I wrote and grunted). We discussed how it seemed like this newer piece in the front of my mouth has been growing pretty rapidly, and it seems the golf ball has been shifting. Despite little pieces of the tumor flaking off here and there, it seems that to some degree, my tumor is still getting bigger, despite what was hoped for. Also, on Monday, I started feeling like I was having more trouble breathing because I was having thicker mucus that seemed to be stuck behind the golf ball. I couldn’t really swallow it or spit it out entirely, so it was causing me some breathing problems. 

So the rest of Monday went like this. I met with an ENT surgeon so she could get a better grasp on my story. She then brought a scope and another surgeon. The purpose of this was to see if in the case of an emergency, they could get a breathing tube in me. The answer is yes, they could. Next, I went and got more MRIs. I tried to tough it as long as I could on my back, but it got to the point where I could not breath. So we got creative, and I was on my side, and they could finish off the rest of the imaging. My doctor came back after they got the MRI results, and yes indeed some areas, especially in my mouth, have still grown significantly, and the golf ball was moving more to the right and back. So I was meeting with the radiologist the following day because they needed to attack this more aggressively, and they feel very confident that this tumor will respond very well to radiation. Lastly, to top it off I was made aware that also in the event of an emergency, ICU has been made aware of my situation, and may talk to me...just in case. OH! And my intended two day stay because of the new changes has now turned into ONE WEEK. I’ll get into this shortly.  

Tuesday, day 3 of this nonsense. So now since the plans have drastically changed, the biggest reason I’m being kept so long is because with me about to start radiation, in the beginning, the tumor will sometimes get bigger before it starts to shrink. This is not ideal for someone who’s golf ball is definitely playing around with the joys and luxuries of breathing. They had also started me on a steroid on Monday to help combat some of that swelling, which on Tuesday, some current swelling went down. The radiologist was in the building earlier in the morning and stopped by (he’s not at this hospital, but in the same system and in a different building down the road). He told us I would be starting radiation today. We got transported there at 11:30, and we didn’t come back til almost 6pm. We talked to the doctor, and he showed up the MRIs with comparisons to the imaging in January, and in that time my mouth portion grew significantly. The portion creeping near my brain grew some, but not much. Not bad, but not great either. For now they’re just using regular (photon beam) radiation as they’re currently focused on my mouth with a short term plan, then in the following weeks they’ll come up with a more complex plan, and possibly switch me over to the proton beam radiation. Radiation is currently set to take place for 7 weeks, Monday - Friday concurrently with chemo. Next, they did a simulation first and made this mask to go over and keep my head in the same place for the treatment. They found a way for me to get propped up just enough that I could still breathe during the whole thing. We had about 4 hours of down time until the actual radiation treatment again. The nurse was super nice because mom winked at her, and she let us stay in the room. I even napped some. Total life saver instead of having to stay in the waiting room that long. The actual treatment is very quick, maybe 20, possibly 30 minutes long. I didn’t feel a thing, but afterwards, you could see the redness on my skin. We got back to the hospital afterwards. Last major thing to happen was the whole main ICU team came up here to talk more about emergency procedures and get introduced to one another. 

Finally, this leaves me here, sitting in my bed, on my laptop, past 2am on what is now Wednesday. I’m going to get a new PICC line placed today before I get a fun five days in a row of chemo beginning Thursday. 

Anyways, I thought the other week was crazy, but this week is way more nuts. However, I'm just going with the flow of whatever and enduring what needs to be to get fixed. I trust in the process and the doctors. And this point, I feel like I've endured a good amount, that these extra morning pokes for blood don't even phase me since I dont have a line to just grab blood easily. I've been through worse at this point.

Hope all of your first week of February has been going better. 

P.S. I’m bald now, well, buzzed, but even the little hairs are slowly falling out.

[mistyautumn]

It’s been a rough day. We just got home from the vet a little while ago with my dog, my girl, Lily. I'm so grateful she could come home, especially since we lost her mom and her dad last summer... The vet isn't sure if its a brain tumor or a stroke and the closest pet mri is an hour away and would require anesthesia which... with her at almost 16 years old I'm not comfortable with, not to mention how upset she gets riding in the car. 😔 She is going on a steroid and there's basically a 50/50 chance meds will help. If you pray, please pray for her. Lily is the most special little girl, she is so good and so loving, and I just... I need her. She was mine the moment she was born. I literally delivered her when she was born and when my mom got home I told her this one is mine, no one else will love her enough. If it's possible to have a pet soul mate, Lily is mine. She's my baby. 💙

[braindamageforbeginners]

A Few Words on Clinical Trials...

14 months, two weeks post-dx

It’s come to my attention that there are people following me on social media hoping I’ll figure out how to survive a deadly disease. Gods bless ‘em; that’s now obviously my core function (well, in addition to figuring out how to get a career and/or life that can survive a brain that not infrequently shudders to a halt and explodes)(which reminds me, I got the car fixed, which is a sort of victory unto itself). So, here’s the deal; full disclosure.

A helluva lot of luck is involved. At every step. First of all, I had my first tumor (probably unrelated, but it’s still extremely suspicious) at age 17, which was successfully and completely surgically removed. However, the longest I’ve gone between MRIs is 12 months, so I was tagged and tracked at such an early point that they detected Tumor #2 (astrocytoma grade II) and removed it as soon as possible (ASAP in this case being a 10-month delay while Obamacare protections and funding came into effect so that I could get insurance)(yes, people do die of treatable diseases in America). And, since astrocytoma tends to come back angry (as it already did), I was closely monitored for the two inter-tumor years between Tumor #2 and #3 (I once calculated I’ve had almost 40 MRIs in my life)(there might be a correlation between that).

Secondly, I was able to get into a clinical trial - and stay in one. I’ve written about that previously, but a major takeaway is that you can always refuse treatment or leave a clinical trial, but if you formally leave or are removed, you never, ever get to come back. Also, due to the specificity of cancer treatments, there are loads and loads of qualifying or disqualifying factors for who is and isn’t eligible for a trial - Again, these are usually for patient safety (if you think otherwise, I’d challenge you to inject a known toxic substance into your system and see what happens). I do know, from working at a biotech company, that, even though the costs of running these trials doesn’t justify the $300K that Pfizer plans on charging for treatments, they aren’t cheap, and, if I were a cynical man, I’d try to jam-pack my experimental drug trial with as many people as possible who looked like they’d survive on standard-of-care (SOC is legally required in addition to all experimental treatments). To that end, I’m also lucky  - again, in a very weird, funky way.

There are three different forms of the IDH gene in gliomas; I don’t have the best one, nor do I have the worst one. However, “second best” is miles better than the worst one. I also have a methylated MGMT gene, which is important - the unmethylated version is resistant to radiation treatment, which is bad. I also have an ATRX mutation, which is relatively rare, but confers a high five-year survival rate (in this case “high” is 30-50%, which is considered failing in most places).

And I’m young (less than 40) and relatively healthy, which is another good predictor - whether it’s because that means I’m more likely to survive the nastiest napalm baths available and ask for more (and that makes oncologists considerably less ginger about starting you off with the nastiest stuff imaginable), or whether there’s some intrinsic anti-cancer aspect of youth, I honestly don’t know. Same goes with tolerating treatment well - I don’t know if that’s a correlation/causation issue, but again, anything that makes your oncologists feel safer about ordering more/harsher treatment is probably going to add to your life expectancy (if the chemo and radiation doesn’t kill you first). I honestly don’t know if I’d’ve been written off if I was morbidly obese and had heart problems.

So far in my grand design to survive the unsurvivable and pass that on, I realize I’m not coming up with superb results that can be easily replicated. Youth and mutations are random chance, getting into a trial is a matter of being in the right place at the right time (as so much else in life)(although you can do research through clinicaltrials.gov to see if there’s anything you might qualify for).

The advice I can give is this; and it’s worked for me, so far (feel free to change, ignore, or discard it as applicable to your situation):

1. Early detection is key. Familiarize yourself with the most common risk factors and symptoms of brain tumors, and floor it to a neurologist when you have them.

2. Get the very best quality of care, and be prepared to travel. This one is huge. For some reason, lots of people are eager to have their hometown hero perform on them, and the results are usually horrific. When you have brain cancer, the difference between “the very best” and “well qualified” is measured in corpses.

3. Don’t take “No” for an answer. I realise we all need to get better at consent issues, but the word “inoperable” needs to be removed from the medical lexicon immediately. Someone recently accused me of giving false hope when I linked to Anderson MD’s list of GBM myths that “inoperable” is usually code for a facility that doesn’t have the expertise, competence, or technical facilities needed to successfully operate on it. In other words, someone out there will have the ability to do something for you, likely surgically if you move fast enough. Yeah, that might be false hope, but you know what false hope beats the shit out of? Completely hopeless. Real grown-ups are surprisingly fragile and tend to go to pieces at the smallest things. In the past year, I’ve seen my parents throw temper tantrums over arguments they’ve had with my siblings, or an ant infestation. If that’s your mindset, then, yeah, you’re going to be paralyzed and lose that window of opportunity to beat this thing. As I wrote previously, you’re going to go into complete, paralytic shock the first 48-96 hours after you get a diagnosis. Enjoy it, because you don’t ever get to panic, ever again. Same thing with “inoperable,” if you want to accept that and  die, that’s your decision. Survival - of any sort - is not for the faint of heart, and you will  have to drag yourself across that finish line (or have your friends help you). Again, passing on some wisdom from Original Research Coordinator, the first 6-10 weeks post-diagnosis are the deciding factor for glioblastoma. If someone refuses to treat you, ask for a referral.

4. Stick through the entire treatment regimen. I’ve written previously that there are a lot of things you can do to make yourself more comfortable and healthy during chemo and radiation (that would be where the “complementary medicine” comes in). Again, you can quit treatment at any point, but you can’t always continue it  And, as I know, once post-surgical options get removed, they never come back.

5. Complementary, not alternative medicine. There is no cure “they” don’t want you to know about, there is no secret cancer survivor meeting where we all toast each other on finding the fountain of health - you’re thinking of Skull and Bones. Having said that, I get it - cancer treatments of any sort are a shit sandwich and you’re going to have to just get over it and take a big bite. It’s seductive to think there’s a less painful, disruptive, and dangerous path. Don’t believe it for a minute - you’ve gotten a raw deal, and you have to get over it. Having said that, exercise, diet, and lots of CDB (and THC)(don’t smoke it, though) probably made the difference for me completing the full 12 cycles of chemo. I never for a minute thought they would cure of me of anything, but they might allow you to survive the cure.

6. Follow your doctor’s recommendations and orders. Americans are the only people in the world who will happily accept a mechanics’ bill for five grand without doing any research or shopping around; but will argue with a trained professional about an obscure aspect of treatment or research. Back in the third or fourth cycle, at Mom’s recommendation, I asked Head Warlock in Charge (HWIC) about hyperbaric oxygen chambers (they’re good for radiation recovery). He nixed it (Mad Scientist also said she wouldn’t recommend it), and, at the next MRI, I was rewarded with a new glowing dot. In this case, that turned out to be further radiation scarring, but what if that bet had gone the other way? And, in defense of HWIC, he did mention in the most recent consult that he’d be willing to sign off on the hyperbaric chamber in a few months, if there wasn’t any further growth and my radiation scaring wasn’t improving (for those of you who’ve seen me recently, the scarring is only visible from the inside of my skull).

[tumortunes]

NED

so today marks the end of all of the horrible no good very bad days!

my end of treatment scans were as perfect as they could possibly be. nodules are gone, other unidentifiable stuff are staying the same size, there is No Evidence of Disease.

it still hasn't really hit me yet. mom burst into tears when we heard that i was NED. that the treatment worked. that things are looking good. the grandparents are so happy. nathan got choked up.

i dont really feel anything.

it was like this with all of the checkpoints/milestones that happened throughout this entire adventure. craniotomy 1, craniotomy 2, finishing radiation, finishing chemo, and all of these positive scans. my reaction was always like, meh.

i thought i would be happy once i reached this point. the official NED. everyone wants to hear that. that's the dream. right?

maybe it'll just take some time for it to fully sink in. that's kinda how i react when i take in new news. like when the first tumor board happened and i was told that my tumor was malignant and id likely need radiation and chemo. the way i react to jarring news like that is to not really have a reaction. even when i saw my big ass tumor on my first MRI scan, i was pretty calm. lol up until i had a seizure.

but i think that might have been a coping mechanism i adopted so that i could keep moving forward while everything was on fire. I think i can very effectively swallow my emotions and react calmly. find out the next step. so that's what i would do. it helped me stay focused and just keep blindly trudging forward.

i think it's only effective up to a certain point. and it's likely a survival response.

but I dont need to be in survival mode anymore.

that's the whole point of being NED. i should be happy because i can relax. i don't need to be as paranoid of the other shoe dropping. this is exactly what i wanted and i still dont feel anything.

but i think it'll take a while for me to unlearn those behaviors. they were effective when i needed to just keep on keeping on but now i think they're hindering my ability to really connect with myself and my emotional/mental status. i should probs schedule that therapy appointment with mariko.

part of me is wondering if my reaction is so lackluster bc im upset. this is how things should have been anyway. i should not have had to do this anyway. i should be entering my 2nd year of pa school instead of starting all over again. my brain shouldn't have had a tumor and i shouldn't have had to go thru this whole experience? trauma? journey? at all.

i see other people celebrating their NED status and popping confetti, champagne, screaming, eating cake. i just dont really feel like doing any of that stuff.

mom and nathan separately asked me if i wanted to do anything to celebrate today. like any special food or something. i didn't really want anything but we got boba. idk. maybe it'll feel more real once nathan and i are living at oak creek and can celebrate together.

nathan said that he also is having a hard time emotionally connecting with the news. he said that it might not hit him until we start doing things that we used to love doing together but had to put on hold. like eating out at a restaurant or hosing a dinner party or something like that.

maybe im still pouting and mourning the way things were. im not sure. i feel like that could be a contributor to my overall flat reaction.

i do enjoy sharing the news with others. they're so happy and it's fun to see their reaction even tho i dont feel that way myself. i've noticed that it does make me feel like the event is a little more real once ive told people about it. usually i like to tell meng and lisa first :)

so maybe once i start sharing the news i'll feel it now mr krabs?

im even listening to my tumor tunes playlist and i havent even cried yet. tears of joy or relief or resentment. nothing.

i got kinda close when i was talking with nathan on the phone earlier before i called meng and lisa. i was trying to figure out my lack of emotion from the NED news with him and i got a little choked up. but the underlying emotion wasn't bc of happiness. i think it might've been frustration that any of this had to happen. and relief that the weight of treatment and being strong by carrying on has been lifted. and probably a combo of lots of other emotions that i havent even figured out yet.

[before-the-lobotomy-blog1]

Well, I don’t really want to talk about this with the people around me, granted I’m not that close with anyone around me. I do feel like I need to say something though and that maybe it will help. Help with something or anything at this point.

I’ve struggled with insomnia for over 10 years, I chalked it up to a paranormal experience but the past two years it’s gotten incredibly worse. I also have always had headaches, which my mom suffers from chronic migraines pretty often so I just thanked genetics for that but those too have been more frequent in the last year and to the point I’m using ice packs or heating pads to just dull the pain.

My mom suggest a back to back sleep study that we paid out of pocket for just so I wouldn’t have to wait. The test happened on a Thursday-Friday and Monday I was going to meet with the doctor, they quickly mentioned some kind of sleep aid but I thankfully never got a chance to try it.

Saturday was fine, normal headaches and being up till about 4am.

Sunday happened and I was sitting in the living room watching TV when my first ever seizure hit. I had a headache coming on and the rest is a blur. My mom said if she didn’t hear the thud of me hitting the floor she wouldn’t of known. I woke up in an ambulance when I actually came back around and the day was spent in tests, blood test, EKG, CT, MRI, even an x-ray. They were able to pump my IV with some sleep aid, I can’t remember the name of it though. So I slept Sunday, waking up around 6am on Monday which is unheard of for me.

Monday I was hit with the news, a brain tumor. Meningioma to be exact and I seem to have hit the lotto with this thing because it apparently is t that common in men, and I’m a guy. It also is usually benign but lucky me, it’s cancer. They did say that it’s probably been there for years and had little to no symptoms, also meaning the insomnia years ago could very well be the paranormal experience but that’s besides the point. The recent year or two or even possibly three I could of caught is benign but waiting it out as long as I did let it basically manifest between my spinal cord and brain.

Anyways, I’m stuck in the hospital with a scheduled surgery in a few hours and a follow up of chemotherapy.

Don’t take moments for granted because you never know when your moments might be at a stand still.

[sergeant-angels-trashcan]

so i decide to start taking care of myself this summer and my body does not appreciate this...at all.

i have been having vision problems for the past two weeks--my vision will go really spotty, i had some weird auras, and occasionally it will all just go dark, which is, you know, kind of terrifying. i thought it might have to do with the lightheadedness i was feeling starting at the beginning of the two weeks, and i figured if i could address the underlying cause of the lightheadedness (extreme muscle tension in my neck) the vision stuff would take care of itself

only it didn’t really, so on friday i scheduled an eye exam for today at one of those glasses places. i go in, and an hour later the doctor has informed me that i have an inflamed optic nerves (both eyes) and a small hemorrhage in the back of one of my eyes, which means that there’s something pushing on my optic nerves (you know, like cerebrospinal fluid, or, like, my brain), and that on a Sunday afternoon the fastest way to get this looked at is to send me to the ER.

Fortunately, I’d asked my mom to drive me (mostly because the eye place is next to an animal adoption place and i wanted to look at cats) 

so we drive to the ER (not the closest one because they’re fucking terrible) and they do all the ER stuff like ask me why I’m there (I don’t fucking know) and what my pain level is (easily a seven but not why i’m there) at which point i realize that i’m...in a lot of pain, and i’m panicking

one of the things i realized about myself during the past week is that i have an incredibly skewed vision of what qualifies for me as pain. my boss sent me home on Wednesday because i was crying i hurt so much, but at no point did it register as pain to me, I considered it discomfort. my brain assumes that if i can still be upright or carry on a conversation, if it doesn’t feel like someone is jamming an ice pick into my brain, it’s not real pain. this becomes a problem when i realize that by those little hospital pain charts I’m at a nine but at no point did my body go “ow, this hurts, let’s fix it” my body has simply said “bitch, stop whining, you need the money”

so i’m in the ER waiting to get a CAT scan and realizing that there’s no way i can exist here for the next few hours because it feels like someone has jammed a knife in my low back, and every time i try to ease the pain, my neck gets tighter (thus making me more lightheaded and less mobile) and every time i try to ease the pain in my neck, i’m at an angle that pulls at my hips. at this point, when i look down i can feel it in my hip

(this is when i got a tylenol with codeine in it)

my CAT scan was completely normal which is great (I am slightly disappointed by this because it means i don’t have answers but I understand that this is the Wrong reaction), though i may have the beginning of some really long scary set of words that includes “tumor” but is supposedly very common, and I’ve been prescribed a medication that, should that be the problem, will hopefully take care of it and clear up the vision problems. 

as I’m typing this out, I realize that I should probably be more freaked out by this but the ER doc prescribed me muscle relaxers--and since stress is making my neck get tight AF and (i’m trying to adjust the way i talk about this) making my neck HURT, i took one. 

so i’m supposed to talk to my primary care doc and get scheduled for an MRI that will probably show nothing, and i will be back to having no answers about why or how exactly my body is broken. at this point, it feels like i’ve lost two weeks to chronic pain, which is really upsetting. i’m still having vision problems, my neck is all jacked up, and my low back/hip hurts so bad. i don’t know what to do. 

i’m not scared, I’m just angry. I have a doctor’s appointment on monday with a plastic surgeon about getting a breast reduction (something i’ve hemmed and hawed about for YEARS). I’ve been looking forward to this appointment for a month, excited that i finally managed to be brave enough to talk to a doctor about it, excited that i might be able to reduce some of the neck and shoulder pain i have by getting a breast reduction, and now i don’t even know if the doctor will let me since who the fuck knows what’s going on with me?????

i’m upset because i finally try and take care of myself and address my physical needs, try to get to a place as pain-free as possible, and then this happens. I can’t look over my shoulder, I can barely turn my head, sitting and standing and laying down all hurt, I can’t see, the more I freak out the more my neck hurts, and I’m so worried about what my medical bills will look like, and I. HURT. 

so. that’s how i spent today.

[builder051]

Avalanche, part 3

The saga continues!  I love how this installment came out as well.  I know a lot of you really like Hildur, and I'm a tiny bit worried you won't love her quite as much after this, but so goes life.

Anyhow, I hope this is enough resolution for the time being.  Their next fic is scheduled for 09 July.

_____

Hildur isn’t prepared for the scene that meets her when she unlocks the door to the apartment.  Lines of dirt criss-cross the carpet from the gurney’s wheels, and the stench of sick is overpowering.  She holds her sleeve over her nose and mouth and leaves the front door open as she tentatively steps inside.

Hildur’s only here to change clothes and grab a few things for Pierce; she’d forgotten about the task of stripping the bed.  The presence of day-old vomit streaking the sheets makes nausea rise in her throat, but at least it’s a distraction from everything else that’s happened.

Hildur had offered Pierce’s parents a quiet hello, then escaped into the hallway to give in to a fresh wave of tears.  Then Khalil had seen her, asked what was wrong, and brought on the inevitable.  She’d vanished, full stop, and made a break for the bathroom until she found the courage to trudge downstairs to the bus stop.

The sheets don’t seem worth salvaging, so Hildur bundles them into a trash bag, fighting the urge to vomit herself.  She and Pierce have been slow to tell people about their relationship, and up until now, it’s been fine.  A good thing, even, since it cut down on questions and forced social niceties.  But now Hildur feels like a teenager, busted for visiting her beau after hours.  Did she really think they could hide in a bubble of isolation forever?  Pierce’s family lives less than an hour away.  Had she thought she could avoid them forever?

A sour taste erupts in Hildur’s throat, and she’s not sure if it’s from the emotion or the mess.  She buries her nose in her elbow and makes a mad dash for the toilet, falling to her knees and heaving.  She folds her arms over the bowl, and tears fall into the water alongside spit and bile.  Hildur longs for Pierce’s arm around her shoulders and his comforting whispers in her ear, but she also wishes to be gone.  Her hair flickers in and out of sight around her temples.  How much better would things be if she could vanish from Pierce’s life just as easily?

Eventually Hildur’s stomach settles, and she sits back on her heels.  Her phone is ringing from the depths of her handbag out in the living room, and her heart sinks as it reminds her of the first message Pierce left for her so many months ago, the one that pushed their relationship from student and teacher to something more.  He’s probably leaving her another message now.  Hildur can’t help but feel she doesn’t deserve it.

She ignores her phone as long as she can, sprinkling baking soda on the mattress and taking out the trash.  Hildur changes into leggings and a clean t-shirt.  It’s one of her new maternity garments, with ruching up the sides to accommodate the baby bump.  She stands in front of the full-length mirror and examines her reflection, wondering how it’s possible to feel that things are so wrong and yet so right.  Immeasurable love and satisfaction bloom in her when she wraps her arms around her distended stomach.  But Hildur’s thoughts immediately jump back to Pierce, and guilt makes her heart pound and her throat tighten.

Hildur folds some of Pierce’s clothes into a tote bag and grabs a handful of toiletries from the bathroom.  She has no idea how much he’ll need in terms of quantity, but packing light seems to be the best option.  She hopes Pierce won’t have to stay in the hospital long.  But if he does, she’ll have the excuse to run home for more.

Hildur stoops with difficulty to retrieve her purse from the floor beside the front door.  Her lower back aches as she bends over, and she reaches for the wall for support.  Hildur pulls the strap over her shoulder, then digs in the bag for her phone.  She has three missed calls from Pierce and close to a dozen texts.  He’s worried about her, and the heaviness in her heart grows.  Hildur sighs and presses play on the first voicemail message.

Pierce’s voice is garbled with the static of a bad connection and the sound of a door opening and closing, but Hildur understands most of it.

“Please come back, sweetheart, I, uh, I’m really sorry about this.  I talked to my parents, and they really want to meet you.  I know I should’ve done it sooner, and it’s, uh, giving you some stress and that’s…really not what you need.”

There’s a pause and a crackle, then the messages goes on.

“I, um, talked to the doctor, and I’m ok, I promise I’m alright.  It, uh, it sounds really bad and I need surgery, but we can wait until after the baby comes.  Everything’s gonna be fine.  Just, please, sweetheart, come back.  I really want you to be here.  I love you.”

Hildur’s blood runs cold.  She holds her phone to her chest and watches as her hair goes silver in her peripheral vision.  Pierce said everything is fine, but Hildur doesn’t believe him.  Even over the bad connection, she can hear the anxiety imbuing his tone.  She takes a deep breath to steel herself up and walks as quickly as she can to the bus stop.

***

Pierce is watching a movie on TV when Hildur arrives back at his room.  He breaks into a grin when he sees her.  “You came back.”

Hildur nods.  “I brought some clothes and things,” she says, holding up the bag.

“Thank you,” Pierce says.  “I should be able to go soon.  Maybe tomorrow.”

“That’s really good.”  Hildur sets the tote bag against the wall and perches on the chair beside Pierce’s bed.  “Are your parents still here?”  Her heart thuds a little louder as she asks.  Hildur isn’t sure what she wants the answer to be.

“Yeah, they, uh, went downstairs, I think.  My mom has to be back to work tomorrow, so they probably won’t stay too long.  They really want to meet you, though.  I mean, really meet you.  More than just ‘hello.’”

“Hm.”  Hildur tries not to let worry overtake her expression.  “We’ve been unfair to them, I think.  I’m sorry I’ve been so afraid.  I’m…I’m still so afraid.”

Pierce turns off the TV.  “Sweetheart, don’t.  Please.  Things haven’t gone the best, but I can’t…I mean, I don’t want to worry about it anymore.”  He sets the TV remote on top of a stack of papers on the bed beside his legs.  Hildur can make out a black-and-white image on the top sheet.  It’s like an x-ray, but there are more shapes.  A small mass on one side of the image is circled in red.

Pierce sees her looking.  “That’s, um, stuff from the MRI.”

“Pierce?”  Hildur’s heart pounds in her throat.  She wonders if Pierce can hear it.

“Meningiomas are benign,” he says, subconsciously running his hand through his hair above his ear.  “It’s a surgery, and then it’s fine.  I don’t have to have it right away.  We can wait till a, uh, a better time.”

“What?  You want to…?”  Hildur slowly brings her hand over her mouth.

“I know I’m bad about, uh, putting things off,” Pierce says, “But I want to make sure you’re ok.  The doctor said it probably won’t get worse. I’ll get it taken care of.”

“But…”  Tears leak from the corners of Hildur’s eyes.  “It’s a brain tumor.”  The words are heavy on her tongue.  They seem to echo as if everything else is falling away.

“It’s, um.  It’s benign.  It’s ok.”

“No, it’s not,” Hildur says, a sob catching her off guard and forcing the air from her lungs.  “You were so sick yesterday.  I can’t see you like that.  I don’t want that to happen again!”

“It won’t, sweetheart.  I have a prescription, and I’ll see the doctor more often.”  Pierce leans forward to put his hand on her shoulder.  “We don’t have to talk about it right now.”

“Yes, we do,” Hildur says, biting the inside of her cheek.  “You can’t ignore it.  I think I’ve learned now.”

“I know.  I just…I have to talk to you about something else.”

“What?”

“Hildur,” Pierce says, a smile playing at the corners of his lips.  “I want to marry you.”

“I…”  The next sob hits with full force, and Hildur shudders as her lips tremble and more teardrops rush down her cheeks.  “Pierce.  I don’t… you don’t…”

“I don’t want to go through life without you,” Pierce says.  “Not ever.”

Hildur can’t force out words.  Her face crumples, and she pushes her fingertips into the corners of her eyes.  “I just…” she tries, but it’s lost in a wash of emotion.

Pierce says something else, but Hildur can barely hear him.  Her breath comes too quickly, and she can see through her pallid hands.  She stands and rushes from the room.  Hildur leans against the wall and stares down at the floor tiles through the blur of tears.

“Hildur?”  The grey-haired woman from earlier is coming toward her from the direction of the elevator.  Pierce’s mother.  An expression of concern and kindness etches her lined face.  “Are you ok?”

Hildur doesn’t feel herself move, but the next thing she knows, she’s folded into an embrace as she cries into the older woman’s shoulder.

[coolasice125]

How many times have you cried in public?

On October 5th, 2019, I found out my mom had a brain tumor from a Facebook post.

I was on a Greyhound from Philadelphia to DC to visit my sister for the weekend, when I opened Facebook to see a post from my uncle that read “please pray for my sick sister in USA.” My visceral reaction was to call my mom and ask what he possibly could be talking about. “I’m sorry baba. I found out last night, but I didn’t want to ruin you and your sister’s time together. It’s benign.” Unsure how to process the news I heard, I became angry at how I found out and regrettably cry-yelled on the phone, disrupting the peace of the quiet morning bus. It was fate that I was en route to be with my sister, the only person I wanted to be with. We had a nice comforting lunch at a local pub then laid on the National Mall. It was a fun day even though I burst into tears on the balcony of 9:30 Club.

Upon my return to school, I continued being unable to process my emotions. On my way home, I went to Giant, bought a personal cake, and told my closest friends the news. The following Monday, I cried in front of my professor at the end of a tense meeting with the dean. I shed enough tears that the following night, at dinner, I calmly told the man I was seeing at the time. Guess I had a lot of practice by then. I aimed to bury myself in work, therapy, my social life, and planning a move abroad in the weeks leading up the surgery so I wouldn’t have time to think about what was imminent and cry in public again.

It worked. Almost suddenly, it felt, I was in Harrisburg when my dad and I walked to the hospital from the Amtrak station. The gray overcast of morning is etched into my mind as he carried my duffel bag in (something he would never normally offer to do). My sister and I waited anxiously while my dad and aunt slept sitting up. We laughed so much that day, but I can’t remember what could possibly be so funny. They awoke and rejoiced upon hearing her surgery was successful and an MRI showed her tumor was 100% gone. Even in her delirious post-anesthesia state, she managed to tell my aunt to shut up, which was the comedic relief we all needed at the end of the night. We went home relieved but wary of her healing to come. I thought I’d internalized all the risks of operating on a literal brain, but my sister floated the possibility of her personality changing post-op. I feared she would lose her authentic self she only unveiled around us.

She healed quicker than expected with the help of my dad, aunt, and her physical therapist. After about two months, she was relearning self-sufficiency, regaining autonomy through daily tasks she once lamented. Even her neurologist was amazed at her progress. She is no stranger to health problems, but this was the largest beast she had faced yet. She started to feel a semblance of normalcy, to which we breathed a collective sigh of relief. The pandemic soon followed with another diagnosis, but I want this post to celebrate her resiliency. Her diagnosis and surgery were 25 days apart, and she took every day in between and after in stride. She was happy to find routine in little things, like watching The Price Is Right every morning. I can’t imagine how tough it was to be alone while my dad and sister were at work, and I was at school. I never heard her complain once. She handled adversity in a way I could only aspire to. For example, I currently have a stuffy nose and am being a big baby about it. As I'm struggling to transition into a new period of my life, I think back to two years ago when my family was on X Games mode navigating this wild situation. Feels almost superhuman.

I'm also pretty amazed at the emotional growth I experienced in just a short few months. Until that day, I'd been living life with the philosophy that college is my time to indulge in myself, always acting in my own self-interest. I was forced to reckon with this somewhat destructive force and reflect on how I can better support my loved ones while still nourishing my own life. Being a caretaker really changes your worldview. As difficult as it was, I badly needed to become one.

October 5th will always be a pivotal day for me. I can only be thankful for the support system I have. You have saved me from crying in public many more times! Even today, friends still ask me how my mom is doing, and I am happy to tell them she is her same goofy self.