Self-Care

One of the biggest physical issues I have been dealing with since my diagnosis would have to be my stomach. I go through periods where my stomach just outright beats the snot out of me. I’ve cried and been in physical distress, all while trying to keep up the appearance that everything is a-okay.

My stomach has always acted up (or more accurately, acted against me) when I’m stressed. What can be more stressful than stage 4 cancer? (Spoiler: Not a lot.) Juggling working full-time, a social life, and oh yeah, cancer treatment… yeah, it’s stressful.

I’ve been doing whatever I can to reduce my stress and not get myself worked up. First, I hired someone to mow my yard and pick up poop. Good lord, this has to be one of the smartest decisions I have made recently. Every penny spent paying this man to take care of my yard is worth it. Taking that off my plate has been huge for me and my stress level. I am currently looking for someone or a company to come and clean my house on a monthly basis. That’s the other big load that I need to take off my shoulders. Finding a cleaning company is high on my to-do list.

Running has definitely been a big part of my stress relief. The physical exertion is just fantastic for my soul, and I feel stronger overall. I don’t know if it will, but of course I hope this helps with my overall survival rate. Maybe I will be an outlier, a cancer unicorn? I keep running because I can, and during these runs, I can still forget that I’m stage 4, even if it’s just for 30 minutes or an hour.

My other stress relief as of late has been reading, specifically romance novels. I used to be judgmental about romance novels, and I honestly think I was just closed off for whatever hang ups I had. Not anymore, friends. Romance, smut, I do not care. I am about that romance novel life, and I give zero shits if anyone judges me. Life is definitely short. Do what makes you happy.

One of the big stressors lately for me has been certain family relationships. It has been strained for quite some time, and my illness just put a big ole magnifying glass on the trouble that’s been there for years. I had to cut off a family member from my life because they were causing me emotional distress. I am only on the defensive, and if I object to any hate or vitriol my way, I’m the one overreacting. I went nuclear and just did a straight up block, but this didn’t come out of nowhere. This has been happening for the last couple of years. I didn’t want to do this, but I cannot keep having the same fight and conversation. Over and over and over and over again.

I would like to think me just bowing out of this negative back and forth will cause my family member to do some self-reflection. Unfortunately, I don’t think this will happen. They’re going to do what they think is best, and I’m going to do the same. I am going to protect my mental health and in turn, physical health, at all costs. I’m not going to fight anymore, and I am especially not extending myself to anyone (friend or family) who hasn’t reached out to me once since my diagnosis to see how I am.

One thing cancer has taught me – you have to look out for yourself. That’s what I’m going to keep doing. Nobody is entitled to my time or energy, even if you are related to me. I don’t want to keep fighting but the other person has no desire to change, so peace out. I only have room for one cancer in my life.

Mental Health, Metastatic Breast Cancer & a Mother-Freaking Pandemic

A question I get asked a lot, and understandably so, has been: “How are you doing?” I typically respond, “Hanging in there.” It’s an answer that tells you absolutely nothing, but conveys the sentiment that hey, I am still here. I am always touched when a friend or family member checks in on me, and it warms my icy cold heart that anyone has been thinking about me. I’ll let you in on a secret though: I often give the non answer of “hanging in there” because I honestly don’t know how to answer this question. I really don’t. Does anyone really want to know the real answer?

Most of the time, my stress level is probably at a 7 or an 8, and it’s been that way since the beginning of October 2020. I am going to do my best to try and explain what this feels like. To me, sometimes it feels like there’s a killer clown with a 10-inch serrated knife in the room with me. This clown looks like it crawled out from the depths of hell, and it has got murder on its mind. The killer clown has soulless, jet-black eyes, and yellowish fangs. It has a devilish smile, which enjoys mouthing the words, “I am going to kill you.”

The kicker – nobody else can see this killer clown.

“Can’t you see it, too?” I scream at others. They nod their head and shrug at me. Nope, it’s only me. So, I have to pretend to be normal and do my best to not pay attention to the killer clown, but sometimes I slip, look back and see it once again mouthing the words “I am going to kill you,” and then freak out accordingly. I still have to go about my regular day and pretend like I don’t see this clown but I am always aware that it is there..

Living alone during a pandemic was challenging and tough enough, as it was. I often felt lonely and isolated. Like so many, I felt cutoff from my friends and my running community. The big difference, though, was that I could still run and work out. Now, I am lucky if I get 30 minutes of aerobic exercise on the treadmill. I keep gaining weight, and my body is changing so much on me. Soon, it’s going to be even more foreign to me, and I mourn my pre-diagnosis body with all my heart and what I used to be able to do.

I am lucky that I enjoy my job, and really like the people I work with and for. My job allows me to be creative, and I always try to learn something new every day. My job allows me to ignore the killer clown for 40 hours a week, and pretend to be normal, when I feel like anything but. I want to keep working as long as I physically can because it really helps my mental health, too. There are stretches of time where I actually forget I have metastatic breast cancer. Oh my, I am actually tearing up thinking about this. I desperately need these stretches of time where I can forget and feel like Lara again.

I truly believe my mental health will significantly improve when the weather gets warmer, and I can leave my house for physical exercise. I miss being on the trails so much. Don’t get me wrong – I will not be running on the trails ever again (well, unless something is chasing me). During my last brain MRI, I tried to go to my happy place, and I found myself transported back to the trails in North Park. I was climbing up the massive elevation on the purple trail, and then I was trotting along the green trail where I typically spot deer.

Even though I’m exhausted pretty much most of the time and my counts are currently in the toilet, I will hike those trails again. I’ll just have my boyfriend along with me (making sure I don’t trip and fall).

Good-bye 2020

Like everyone else in this whole wide world, 2020 was a giant dumpster fire of bad news, cancelled plans, and overwhelming feelings of isolation. A couple of weeks ago, I underwent my first ever brain MRI that my oncologist ordered. I had been experiencing more headaches than normal, and I had episodes of complete forgetfulness which worried me.

First of all, MRIs in general are just anxiety-inducing procedures to begin with. During my MRI, I did not have any option to listen to music. As a result, I spent the 35 minutes in the MRI tube trying not to think about the very enclosed space and cage around my face. I did try to go to my happy place, but the sounds of VMMMM VMMM DUM DUM WHIRRRRR, or a combination thereabouts, prevented me from going to my happy place.

Also, similar to that gut feeling I had when I pushed my oncologist to order the CT and bone scan, I honestly felt like something was there. Guess what? I was right. (Yay me.)

I have a 9 mm (approximately a 1/3 inch) tumor in the back of my brain. When my oncologist told me that news, I just broke down. When I thought I was just dealing with a met to my sternum, it was one thing. Oligometastatic, if you’re going to have stage 4 breast cancer, is the diagnosis you want because the good prognosis and life expectancy odds are in your favor.

However, the idea that I could be also dealing with brain mets not only pulled the rug from underneath me, it beat the shit out of me with a bat. I mean, come the fuck on. This is a lot for anyone to deal with. I knew that even if the brain tumor turned out to be benign, the fact that I had metastatic breast cancer, a brain tumor, plus all the bullshit that comes with Cowden’s Syndrome, felt downright unbearable.

ESPECIALLY IN A FREAKING PANDEMIC. It’s not like I can meet up with my friends for support, or travel down to my parents house for Christmas like I had really wanted to. I spent Christmas by myself (well, my dogs are with me). As a result, I lost it. I cried a lot, and both my anxiety and depression took the wheel, while I stayed in the backseat curled up in a fetal position. I wrote in a notebook how I really and truly don’t want to be anyone’s idea of inspiration or strength. Let me be weak and cry, and for the love of pete, do not put me on any pedestal. I hate that shit.

I’m human, and I’m doing the best that I can. I’m not going to put on a brave face to make anyone feel comfortable.

Finally, after consultations with a neurosurgeon and my radiation oncologist, my team of doctors all agreed that this tumor looked like a typical meningioma, and where it was located in my brain further suggested that it’s a benign tumor. However, since this was the first ever MRI of my brain, the neurologist can’t say with 99.9 percent certainty without a second scan. If this tumor doesn’t appear to have grown in between scans, she can say with almost complete certainty that this is benign and let’s just keep watching it.

If I didn’t have Cowden’s Syndrome, she would have re-scanned me in 3 months and then 6 months, and then so on. Since I have stage 4 breast cancer, they are going to scan me in 4 weeks or so (pending insurance approval), and then every 3 months for a period of time. We will only talk surgery if it looks like it’s growing or I’m symptomatic. I am a-okay with this plan because I have zero desire to have brain surgery unless it’s necessary.

Oh look, there have been research into the frequency of meningiomas in patients with Cowden’s Syndrome: Hidden association of Cowden syndrome, PTEN mutation and meningioma frequency (source). Fun, super duper fun.

I’m not surprised that 2020 ended with one last punch to my emotional well being. This year, I was told that my breast cancer is now stage 4. I missed out on my own planned 40th birthday party, my beloved niece’s high school graduation, and a trip to Maine with my best friend. I spent every holiday at home by myself. Why not add a brain tumor to the list?

In an effort to put a horrible year behind me, I will do my best to recap and focus on the good things that happened (or, in my case, the not so terrible news):

  • My brain tumor is certainly benign.
  • My cancer appears to be only in my sternum still, not widespread.
  • I still have my job, and in fact, I got a promotion!
  • Management at work has been so wonderful and supportive to me. My boss, and boss’s boss, have been the epitome of caring toward me. I will honestly work for them as long as I can.
  • Countless friends have helped me and showered me with love in 2020. They sent generous gifts, bought Huffman rules clothes, and sent me money. Because of my loved ones’ generosity, I have been able to save more money and prepare myself for the rainy day that is coming, and it is coming fast.
  • Last, and certainly not least, my boyfriend has stood by my side, and he makes me feel like the luckiest woman alive. (Never thought you’d hear that coming from someone who definitely did not win the genetic lotter, huh?)

Yeah, 2020 sucked royally, and my life will never be as it was. It’s okay. If my only win this year was that I survived, I’ll take it.

Back to Work

Today was my first day back at work, and I beyond excited to be back. Am I ready? Mentally – hell to the yeah. I am someone who loves and appreciates a routine. Recovering from major surgery and dealing with the fact that I have metastatic disease has honestly made these past six weeks feel like six months. All I had to do each day was think about my poor health and catastrophize my fate.

Needless to say, time dragged.

Work will be a welcome reprieve from my worried mind. I can focus on audit, fraud, and whatever else I have been tasked with. Work will allow me to be more than just a cancer patient. I mean, yeah, I’m a cancer patient, but I can put on a different hat for the majority of my week.

Plus, I like working, and I really love the team I am on at work. We are a great, supportive team. I truly enjoy figuring things out, editing, research, and analysis.

Am I ready physically? Maybe. I am tired, friends. My body feels foreign to me now. For the last couple of days, my legs have felt heavy, and I feel winded just walking up stairs. This time last year, I ran a marathon!

The gyn oncologist cleared me for exercise today at my 6-weeks post op appointment, and I am already setting goals for myself. I would love to be able to run a 5K in the spring. Even if I am slow as hell, I am going to keep moving until my body tells me I have to stop.

I swear to GOD, I will crotch punch anyone who cries at the sight of me running and refers to me as inspirational. Never ever ever ever ever make me the subject of any inspiration porn.

I just want to live my life, and I’m going to do whatever I can to have more good days than bad.

This, I promise

Understandably, I have been thinking a lot about my priorities since my oncologist told me my cancer is Stage 4. What do I want to do with whatever time I have left. Don’t get me wrong – my oncologist at no point has told me to start getting my affairs in order and preparing for death.

However, the thing about metastatic cancer is that you have no way of knowing if you’re going to be one that responds well to treatment or poorly to treatment. Right now, as far as we know, the cancer is only in my bones: confirmed in my sternum and possibly in my spine. Cancer is smarter than all of us, and I have no doubt it’s already thinking of where it wants to go next.

As I recover from my surgery, I have been thinking about what I really want to focus on and try to achieve, and what time-sucking activities should I just let go. I hope and I pray that the side effects from the upcoming endocrine therapy will not be so bad so that I can go back to work.

I want to go back to work, I really do. I thrive in a structured environment, and I enjoy having a purpose and teaching others what I know. I’m an internal auditor, which I get isn’t like making scientific breakthroughs or saving lives. I contend that even in the normal, every day jobs, you can always make a difference in someone’s life by small acts. Maybe my enthusiasm for research and dogged determination to figure out the answer will rub off on a fellow coworker?

I also work for a company and a team that know about my stage 4 diagnosis. I truly believe that this company, if possible, will want to help fight against metastatic disease and the criminal underfunding of metastatic breast cancer research. I still have zero desire to be, what I call, cancer famous. If I have to put myself out there, though, to put a face to metastatic breast cancer and the importance of research, I will do it.

This, I promise, is my solemn vow: I am not going to go quietly. Please don’t mistake this statement as some declaration of mine that I’m going to “fight” cancer and win. Cancer is not a battle or a fight, and I’m not going to “beat it” or “win.” It is a deadly disease that will eventually kill me just like it killed my mother (hmm, maybe I shouldn’t be a motivational speaker, eh?).

Two generations of Metastatic Breast Cancer

I intend to make as much noise as I can for as long as I can about the importance of metastatic cancer research and the insidious PTEN mutation that caused my cancer. When I was considered to be an early stager, I was often described as outspoken or very vocal. Well, guess the fuck what… that’s just a preview of what’s to come. Ideas are brewing.

Metastatic breast cancer killed my mother, and I was told I had stage 4 metastatic breast cancer at the same age she was when she died. I was maybe 3 years old when my mother was first diagnosed, so this disease has been a part of my life for more than 3 decades, almost 4. I’ve never wanted to be defined by cancer, but we don’t always get what we want.

I’m not going to go quietly. I plan to do something about this, and it’s not always going to be positivity and rainbows. If I’m angry, I’ll be angry. Same goes for sad, depressed, happy, or hopeful. I’m going to feel all the feelings, and when the time comes for me to meet my mother again, I hope she knows I gave it my all.

Almost Over That Hill

I am months away from my 40th birthday, and I have been thinking about turning the big 4 0 for awhile. Gird your loins, I’m about to word vomit up some feelings.

My mom died at the age of 40, and for the longest time, I thought I would be dead by 40 just like her. When I was in the throes of cancer treatment at the beginning of my 30s, I truly believed that  I was going to end up just like her – just minus the husband and 3 young kids.

My inner monologue would not shut the eff up about this. The thought would just bury itself in my brain, and my inner monologue would not let it quiet. I panicked a lot and felt doomed. All my life, I had been told I look like this woman I have barely any memories of, plus not only that. I talk like her and I walk like her.

Throughout my 20s and then 30s, I had basically all the same medical problems she did. Why wouldn’t I think I’d die just like her? When you are already an anxious person, adding cancer to the mix that was like adding gasoline. It took a lot of years and a lot of therapy to get this fatalist belief out of my head. It’s been almost 9.5 years since I was diagnosed with breast cancer, so that definitely helps too.

My mom’s life and death has been my medical road map. She’s been my answer to so many questions – why I got cancer and why I can’t have kids. For 33 years, I have felt like I have been walking with her by my side. With every surgery or treatment, I can say, “That’s not really a surprise. Mom also had that, or Mom dealt with that.”

So hooray, I am not going to die just like her. Now, I get to wrestle with the fact that I am about to live longer than my mother was able to do. My road map, it’s coming to an end, and it’s scary. How am I going to navigate the shit show that is my medical history without my road map?

This is the part about turning 40 that is scaring me and sends panicky waves washing over me. I have honest to God felt like I’ve been 40 for a good year already, probably because most of my coworkers are so much younger than me. Given the pretty large age difference and my illness, I have felt like I have zero in common with them, who all get along great. I just feel like the weird old lady.

Now that I am turning 40, I am grateful I never had any age goals set because I certainly would be disappointed come April, lol. I have never thought, “I am going to be married with 2 kids by the time I’m 40.” I just want to be happy, and boy oh boy, I do feel that way. It took 36 years for me to reach this stage but here I am, and I never want to leave it.

I enjoy my job, which actually feels like a career to me. I love my boyfriend, and I have a great group of friends. I snipped snipped snipped the awful pieces from my life, and I have filled it with calm happiness. I no longer deal with a cheating boyfriend or crazy stalker ex, or “friends” who try to one-up all your medical problems, like we’re in some competition for who has the worst life.

The older I have gotten, the people I have let in my inner circle are quality, not quantity. I am working out at the gym, and I am the strongest I have ever been. I’m heading into my 40s in good shape, both physically and mentally (knock on wood).  Now I have to wrap my head around what it really means and feels like to live a longer life than your own parent.

 Good thing for therapists, huh?

Insurance Companies are Vile

A December 2, 2019 press release on UnitedHealth Group announced that “revenues for 2019 are expected to approximate $242 billion, with net earnings to approach $14.25 per share and adjusted net earnings to approach $15 per share.”  Cool, cool.

UnitedHealth Group is ranked 6th on the Fortune 500 list. The CEO of UnitedHealth Group, David Wichmann, received a total compensation of $18.1 million in 2018, according to an April 22, 2019 article in the Minneapolis/St. Paul Business Journal.

A July 18, 2019 article in The Washington Post reported that “Two families of children with a rare and debilitating disease celebrated Thursday after UnitedHealthcare reversed previous denials and approved coverage for a $2.1 million gene therapy.” The article further stated, “UnitedHealth Group’s chief medical officer, Richard Migliori, said in an interview Thursday that public attention on the families’ plight played no role in the reversal. He said the decisions were based on clinical evidence.” Okay, sure, Jan. OF COURSE, NEGATIVE MEDIA ATTENTION PLAYED A ROLE IN THE REVERSAL.

According to a March 6, 2019 Jurist item, a “federal judge ruled Tuesday against UnitedHealth Group and its subsidiary United Behavioral Health, saying the insurer used overly restrictive guidelines to improperly deny benefits to thousands of mentally ill insureds.”

A May 1, 2019 article found on BenefitsPro.com reported that a federal judge “who survived prostrate cancer has stepped down from a putative class action lawsuit over a health insurance company’s ‘immoral and barbaric’ denial of a radiation treatment.”

Read it here for yourself.  “It is undisputed among legitimate medical experts that proton radiation therapy is not experimental and causes much less collateral damage than traditional radiation. To deny a patient this treatment, if it is available, is immoral and barbaric.”

These stories are not hard to find. Insurance companies will fight and claw for every penny. They raise our deductibles and out of pocket expenses until the point where we forgo important surgeries or medication just to live. A December 2019 Gallup poll recently announced: “A record 25% of Americans say they or a family member put off treatment for a serious medical condition in the past year because of the cost, up from 19% a year ago and the highest in Gallup’s trend.”

Yeah, I am one of these people. I am putting off a couple of surgeries because I cannot afford the deductible, plus I cannot afford to earn 70% percent pay on top of that. Once I pay off my basement waterproofing debt, I could perhaps afford to have the surgeries I need done for [redacted].

CNBC reported on February, 11, 2019: “A new study from academic researchers found that 66.5 percent of all bankruptcies were tied to medical issues —either because of high costs for care or time out of work.”

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The December Gallup poll also stated:

Reports of delaying treatment for a serious condition jumped 13 percentage points in the past year to 36% among adults in households earning less than $40,000 per year while it was essentially flat (up a non statistically significant three points) among those in middle-income and higher-income households.

As a result of the spike in lower-income households this year, the gap between the top and bottom income groups for failure to seek treatment for a serious medical condition widened to 23 percentage points in 2019. The income gap had averaged 17 points in the early years of Barack Obama’s presidency, but narrowed to an average 11 points in the first few years after implementation of the ACA, from 2015 to 2018.

I live alone and I’m single. I worry about the next medical crisis frequently, and if that’s going to be the one that forces me to sell my house, car or camera gear. What am I going to have to pay to stay alive? I have had my loved ones go, “Oh, well, your insurance company will cover you,” and not necessarily take my fears seriously. If given the opportunity, my insurance company will drop me because I’m expensive to keep alive and healthy. 

So congrats, UnitedHealth Group, on your stellar year! People are forgoing medical procedures and rationing medication while you all celebrate a profitable year. Good job, guys.

 

The In Between

After I was done with active treatment, I never really felt comfortable with the label “survivor,” and bristled whenever someone called me that. As the daughter of a woman who died of metastatic breast cancer, I never liked the word “survivor” because I’ve always known my cancer could come back.

I have been revisiting the idea of being a “survivor,” ever since learning I have [redacted]. I’ve had cancer twice, but I haven’t survived anything. Can you be a survivor if you’re 99 percent sure it’s just going to come back in some way, shape or form?

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So what am I then? I have come to the conclusion that I am 100% not a cancer survivor – there’s no after for me. This is always going to be my present. I’m just not a cancer survivor, and I will shake that label off me for the rest of my life, swatting it away like a fly.  The label that finally describes me and the label that fits is Mutant.

I. Am. A. Mutant.

To me, a mutant lives in the in between, existing in between two worlds. I live between the “healthy” world and the “sick” world. I am training for my fourth marathon, and I consider myself pretty strong right now. I run four days a week and strength train two days a week, but I am not part of the “Healthy” world.

I have a team of doctors dedicated to various different, um, ailments. I have regularly scheduled scans, although some I have postponed for way too long. I am not currently sick or in treatment right now, so I’m not really part of the “Sick” world. I haven’t had a surgery in 2.5 years, which is a good stretch for me. When I can go a couple of years without a surgery, I feel like a success.

I am going to be seen for my mutant life and my mutant problems for the rest of my life. There are going to be stretches where I’m sure I’ll have setbacks and find myself in the “sick” world (aka active treatment).

Survivor implies that I have put cancer behind me, and taken up a bright-colored boa and survivor sash. When you have to continually to see doctors for the rest of your life to ensure that your one cancer hasn’t come back and you haven’t developed any new ones, this isn’t in the rear view mirror. Hell, it’s in the passenger seat riding along with me.

There’s a beauty of existing in the in between. I have answers and no longer deal in uncertainty, and there’s a peace that comes along with that. I cannot change my DNA or its mutations, but I can find peace in acceptance. I can and I will.

My Version of the “Breast Cancer Awareness Game”

I have heard that this year’s “Breast Cancer Awareness” game is already rearing its head, and I have a couple initial thoughts.

First one being, come the fuck on. It’s not even October. It’s not even SEPTEMBER. Why why why?

My second thought is this, and will always be this, WHO IS NOT AWARE OF BREAST CANCER? Seriously, find me that person who isn’t aware of breast cancer because they need to have a talk with me. I want to know where they have been hiding for the previous 20 years and see if they need joining the 21st century.

Here’s the game: you receive this message.

“Hi beautiful ladies so here it is the time of year again when we try to raise awareness of breast cancer through a game. Its very easy and i would like all of you to participate. Last year we had to write the colour of our bra’s on our status. Men wondered for days what was going on with random colors on status’s. This year we make reference to our love life status as a flavor. Do not answer to this message just post corresponding word on your status and send this message privately to all the girls on your friends list. Blueberry is single, pineapple is its complicated, raspberry is I dont want to commit, apple is engaged, cherry is in a relationship, banana is married, avacado is I’m the better half, strawberry is can’t find mr right, lemon is I want to be single and raisin is I want to get married to my partner. Last time the bra game was mentioned on t.v let’s see if we can get there with this one. Please resend this to all your girly friends then update your status with your answer ONLY! DONT TELL ANY GUYS!
I hope to see lots of fruit 💝

 

FRUIT, BECAUSE WE’RE TALKING ABOUT OUR MELONS, LADEEZ! AMIRITE OR AMIRITE.

Okay, here is what I want you to do if you find this word excrement salad dressed up as awareness in your message box, hit a reply all and send them this:

Hi beautiful ladies!  It is the time of year again when we try to raise awareness of breast cancer , but not through a game. Games are so 2016. Let’s raise awareness by education and outreach – what do you say, gals? This year, how about we make reference to the reality of breast cancer, and send this message privately to all the girls on your friends list. Post the following: 113 for the amount of women and men who died of metastatic breast cancer in the U.S. every day;  33 months for the average lifespan following a metastatic breast cancer diagnosis; men for the fact that MEN actually get breast cancer too; Metavivor for the name of a non-profit organization dedicated SOLELY to researching metastatic breast cancer; October 13 for the one day out of the month of October dedicated to metastatic breast cancer, the only breast cancer that kills; 6% for the percentage of women and men diagnosed with stage 4 initially; and 20 to 30% which is the estimated amount of those with early stage breast cancer who become metastatic later on. Let’s see if we can get real breast cancer awareness out there! Please resend this to all your friends and then update YOUR status with your answer only! Okay, if you want to add more, by all means. This is serious business, and it’s not a fucking game. 

I hope to finally see this being taken seriously! 

What do you think, friends? Are you in? Let’s drown out the pink noise with real action.

The Cost of Cancer

Given my own medical history—surgeries, chemotherapy, radiation, lions, tigers and bears—I am beyond biased when it comes to talk about healthcare and its costs. My bias is so strong that I am pretty sure I’m physically incapable of listening to Speaker Paul Ryan talk about healthcare without having a rage stroke.

RYAN: I’m not. Number one, health care is a complicated and very emotional personal issue. And we completely understand that. The system is failing. We’re stepping in front of it and rescuing people from a collapsing system.

And more importantly, we’re keeping our word. That’s really important here, George. People expect their elected leaders, if they run and campaign on doing something, they expect them to do that. And that’s what we’re doing. We’re keeping our word.

And I would argue that we would spell disaster for ourselves, politically, if that’s your question, if we go back on our word. This is us keeping our word. But most importantly, it’s us trying to fix a real problem that real people are experiencing in this country.

Gosh, I loathe this guy.

Sure, Speaker Ryan, a great way to fix a “real problem” in this country is to cost 24 million people access to healthcare. Next up, y’all should fix the real problem of animal abuse by legalizing dog fighting, or fixing the real problem of the opioid crisis by shutting down drug rehab centers.

Meanwhile, having health insurance alone is not a guarantee that one will emerge from a health crisis financially unscathed. Cancer, specifically, will cost you. No matter where you are in life, it will cost you, especially if you are single and younger.

I often wonder if most (and by most, I mean politicians) understand the different costs that come with being diagnosed cancer and all that treatment entails: co-pays, deductibles, medication, transportation, parking fees, as well as loss of income whenever you have to take time off work for appointments or treatments.

When insurance companies work their absolute darndest to make paying out your claims an Olympic-level feat or the drugs you need become so expensive that you cannot afford it, then those other costs add up quickly.

Cancer drug costs themselves are astounding. The drugs keep going up and up and up, all the while your pay remains the same or lessens because of all the time you need to take off. A July 1, 2015 US News report stated that “Out of the nearly $374 billion Americans spent on prescriptions in 2014, $32.6 billion – about 9 percent – was spent on oncology drugs, according to the annual report by IMS Health Informatics,” and “Patients typically pay 20 to 30 percent out of pocket for drugs, so an average year’s worth of new drugs would cost $24,000 to $36,000 in addition to health insurance premiums.”

When someone is sick and cannot afford their medication, it’s not like the medication fairy comes down and gives them the medication regardless. If a cancer patient needs a treatment that may save their life but they cannot afford it because it’s not covered under their insurance, then it’s not like they are going to get that medication anyway. That’s not how the system works.

Most of us experience what is called financial toxicity, defined by StatNews.com as “the problem of paying for cancer.”  The article stated further:

According to the [National Cancer] Institute, when a loved one develops cancer, the family’s risk of significant financial hardship becomes startlingly high:

• Between 33 percent and 80 percent of cancer survivors exhaust their savings to finance medical expenses.
• Up to 34 percent borrow money from friends or family to pay for care.
• For those who fall into debt, the level of debt is substantial. In a study of colon cancer survivors in Washington state, the mean debt was $26,860.
• Bankruptcy rates among cancer survivors are 260 percent higher than among similar households without cancer.

A November 20, 2012 study published in The Oncologist examined the financial toxicity of treatment, and what it found, should make anyone who thinks the current healthcare system is fine just the way it is be completely ashamed of themselves:

Insured patients undergoing cancer treatment and seeking copayment assistance experience considerable subjective financial burden, and they may alter their care to defray out-of-pocket expenses. Health insurance does not eliminate financial distress or health disparities among cancer patients.

Let’s say that one again for anyone who may not be listening: Health insurance does not eliminate financial distress or health disparities among cancer patients.

Discussing the price of cancer drug costs further, A December 13, 2016 Forbes article stated, “Many can’t afford out-of-pocket cancer drug costs until they meet their insurance deductibles, so they don’t take their meds, skimp on doses or wait before filling prescriptions.”

Recently, a March 15, 2017 NPR article reported: “One-quarter of all cancer patients chose not to fill a prescription due to cost, according to a 2013 study in The Oncologist. And about 20 percent filled only part of a prescription or took less than the prescribed amount. Given that more than 1.6 million Americans are likely to be diagnosed with cancer this year, that suggests 168,000 to 405,000 ration their own prescription use.”

I would have been completely and utterly decimated by cancer treatment if it wasn’t for my ex-boyfriend who supported me. The bills would have swallowed me whole, and he is the reason I kept afloat and didn’t have to move back home with my parents. I missed a lot of work. Copays and parking fees added up quickly.

A May 16, 2013 article published by CBSNews.com stated that “people with cancer were more than 2.5 times more likely to declare bankruptcy than people without cancer, with the likelihood even greater in younger patients.” The article further stated that “cancer patients who filed for bankruptcy were more likely to be younger, women and not white, the researchers found.” This is the part of the article that made go, well of course.

The authors point out that since a cancer diagnosis is often a sudden life event, younger patients’ bankruptcies may be influenced by preexisting debt, not having as many assets, having more dependent children and not having supplemental income of others in the household at the time of diagnosis.

When a young person is diagnosed with cancer, they are still waist deep in student loans. They haven’t been in the work force that long so their savings are slim to none and their salary can barely cover standard living expenses. When a catastrophic event like cancer occurs, how are they going to fully cover all the costs that come with a diagnosis?

A January 5, 2016 Reuters article reported that “one third of working-age cancer survivors go into debt, and 3 percent file for bankruptcy.” The article cited a 2012 survey using data from 4,719 cancer survivors between 18 and 64, and one-third had gone into debt and in more than half of those cases, the debt was above $10,000. The article indicated that three percent had filed for bankruptcy.

For all of those who believe that everything is fine and the system doesn’t need any intervention, I have a question to ask: have you ever been sick? Do you know anyone who has ever been sick or cared about anyone who has ever gone through a major illness?

Cancer is not a punishment. Cancer certainly does not mean you have some moral failing. Both good and bad people become diagnosed with cancer every day. Every day folks who were going about their days had their lives completely upended by this disease: infants, kids, teens, adults or the elderly. Anyone. Cancer does not discriminate.

This country has some pretty messed up priorities where we can people that they should lose everything they have and/or choose between medication or food (the modern day’s Sophie’s Choice, I guess?). Politicians and those right-leaning folks screaming how they don’t want the government involved in healthcare don’t seem to care or mind when their fellow citizens lose everything while insurance companies and drug companies make profits left and right.

Profits over people, huh?

How is this right? Please, someone tell me how any of this is right because I honestly do not understand.