[Redacted]

Yesterday, I learned the results of my second time around at genetic counseling. The counselor told me that I have what’s called [redacted], and it pretty much explains 90 percent of the medical problems I have had my entire life. Like, pretty much everything. It’s all been [redacted] the entire time. Basically, in the genetic lottery, I lost, and gotta say y’all, I have been reeling.

Am I going to divulge the name? Nope, not at this time. Maybe later when I’ve wrapped my brain around what it all means, and what I have to do.  Right now, I feel pretty fucking angry. This [redacted] is something my mother passed down to me, and it’s something she never knew she had.

This [redacted] is why my mom got sick at the age she did and why she died. It’s why I got breast cancer and thyroid cancer.  Everything that has been absolute shit in my life (medically speaking), it’s been this.  This anger is boiling in me, and if it doesn’t come out, I’m going to erupt. I can feel it vibrating out of my fingers and it’s escaping through rage with a layer of panic and anxiety.

I have a lot of fuck yous that I need to get out of me. I want to release these fuck yous into the universe, which has given me a great fuck you. Hey, this blog is “get up swinging.” Maybe I need to take some swings.

I want to say fuuuuuuuuuuuck you to this [redacted] for being the source of all my mother’s problems, and being the reason I grew up without my mother. I know metastatic breast cancer killed her, but [redacted] lit the fucking match.

I want to say fuck you to anyone who wants me to see the positive in what’s a very much negative situation. There’s no putting lipstick on this pig. Let me say this very clearly – I’m allowed to feel angry and sad. If my anger and dark mood makes you feel uncomfortable and icky on the inside, those are your feelings to manage. Not mine. I don’t have to put a fake smile on my face to make anyone feel comfortable.

I looked into a crystal ball, y’all, and all I saw were a never-ending parade of doctors visits, MRIs, surgeries, and whatever medical procedure is necessary to keep me upright. Why can’t we let sucky things just suck? It’s okay. I’d be a robot if I could be given this diagnosis, put a smile on my face, and go, “It’s okay, but things happen for a reason?”

I have no desire to be anyone’s inspiration porn, and my anger isn’t an invitation for any pity, as well. I’m not feeling sorry for myself. I am acknowledging my feelings, and right now, those feeling are pretty much anger and despair.

I want to say fuckkkkkkk you to insurance companies and doctors offices who make dealing with illness and issues a full time job. I spent 40 minutes today just to get an appointment for my first doctors appointment since this diagnosis. I need a [redacted] as soon as possible. In fact, I probably should have one 3 years ago.

This medical practice told me twice that they didn’t have an opening for a month. I escalated matters, and probably not in a nice way. I do not give a shit. I need this test done, or maybe this doctor’s office might want to hear my anxiety and worries every day over the phone until they can see me.

Yeah, I have an appointment on Monday. Funny how that works.

I’ve already had cancer twice, and this diagnosis means [redacted] in my future. I’m going to be an advocate for me because nobody else is going to take up that role for me. Not a single person. This is on me, and it’s my life. If you can’t help me, I will find someone else who can. Just get out of my way.

Just before we wrap things up, folks, I have a couple more special fuck yous.

A big fuck you to the politicians out there who think people like me don’t deserve to have access and keep access to quality healthcare. They think it’s for the worthy or those who have money, and at the same time, these politicians don’t give any shits at all about rising medical costs and drug prices. Nah, let’s keep pricing the sickies out and let them die out, amirite or amirite?

It hasn’t been cheap keeping me alive, and that doesn’t look to be changing… ever. I have something I have literally no control over, and any day, the rug can be pulled from me. There’s nothing I can do about it… but hey, if I become too sick to work, I’m just probably a lazy, good-for-nothing expecting sumthin’ for free, huh?

Fuck. You. Especially. To. Paul. Ryan.

This is a “Fuck you, Paul Ryan” household, always.

An enthusiastic fuck you to anyone who would dare tell me I could take some essential oil or ingest CBD oil 24-7, and that will cure all my problems. You come at me with any of that bullshit, I hope you run faster than me, but guess what? My time is improving. Unless I’m in your office and you’re reading my medical chart, I do not give a shit about your opinion or your so-called research. Oh, why didn’t you tell me that you did some google searches and watched something on Netflix, that’s all I needed to hear. Please tell me how I can “beat” [Redacted].

GTFO with your wellness, woo peddling selves. You don’t know anything about [redacted]. Anyone who comes at me with that is going to get a lecture from me about abelism, and how just the fact that you’re healthy, doesn’t mean you know what it’s like to cure all that ails others. I won’t tolerate it… ever. Consider this my one and only warning. If I want your opinion about anything related to my health, I will ask.

Finally, a very special FUCK YOU to [redacted]. You have been the cause of all my major medical problems and I guess will be the source of most of my future ones. FUCK YOU for ramping up my anxiety back to unheard of levels. Personally, I have missed panicking and crying at work. Wait, no I haven’t.

FUCK YOU [redacted] for affirming my decision to never have kids. You know what, in an alternate universe where I haven’t had all these medical issues, I think I would have been a kick ass mom. I know I would have, but I have always known that given all my problems and the fact that my mom had them too, I never wanted to pass this unknown issue to a kid. Well, now I know the name. When I’m on my deathbed, I’m not going to have a single fucking regret that I didn’t have any children.

I’m going to be grateful.

How messed up is that? I’m going to be grateful that there isn’t a child out there with 50 percent of my DNA because I wouldn’t a child to go through what I have. I guess that proves my point that I know I would have been a great mother because that’s a pretty motherly thing to think, huh? I don’t want a child to ever have to suffer.

FUCK YOU [redacted]. I never wanted to be defined by cancer. Joke’s on me. Now I’m defined by [redacted].

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So I did a thing

Pretty much anybody who knows me knows I do not like the spotlight, nor is it something I ever seek out.  The very idea of it makes me ridiculously uncomfortable, like a thousand bugs crawling on me. I don’t like being in photographs, and I cringe when I see myself on video.

I know I have pontificated on the importance of parents being in the photographs with their kids based on the fact my mom hated being in the photos. I will cop to being a hypocrite when it comes to being in the pictures and videos.  Lara Huffman, hypocritical photographer. #thatsme

So, when I saw a post on Facebook, announcing that UPMC Health Plan was looking for volunteers for their “This is what a Runner Looks Like” campaign, I thought, “Hmm, maybe I can talk about Metavivor?”

I knew I could get UPMC’s attention by just saying a little about myself. Breast cancer + young age = catnip for social media teams. People love the breast cancer SURVIVOR narrative, so I used it to my advantage. Surprise surprise (or not), they called me up and said they wanted to share my story.

I told the very nice woman up front that I didn’t want to do it if I couldn’t talk about Metavivor somehow and mention their name.  She tried to get me to agree to do the series, even if I couldn’t talk about Metavivor, insisting that others will find my story inspirational. I told her that yes, I am sure, and I don’t want to put myself out there like that on behalf of UPMC if I couldn’t talk about the organization I wanted to broadcast.

I will only publicity whore myself out for charity, thank you very much.

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When I didn’t hear from her for a handful of days, I thought, “Welp, big hospital conglomerate decided they didn’t like my provision. OH WELL.” Then they surprised me, and got the approval.

Boy, the day of the taping, I felt so awkward and wanted to hide. I kept telling myself, “It’s for Metavivor, it’s for Metavivor.” I also thought if I could put it out in the universe that not everybody becomes some zen Cancer on the Buddha top after going through cancer treatment. That’s not me. I don’t have any answers, or pretend that I even do. Cancer didn’t make me a better person or some changed, wide-eyed person who takes life by the horns.

Cancer did give me something I didn’t have quite as much before: impatience with people who don’t deserve my patience. I don’t have the time for friendships that caused me more grief than joy. If you are not in my life, then it’s for a very deliberate reason, which I am under no obligation to explain myself. I definitely cut people out of my life who needed hand holding constantly, but if you have a problem, then they have to one-up you. I cannot stand those people, and they make me see red. I definitely do not have patience for anyone who wants to mistreat me or my loved ones.

 

So I never want to be put on a pedestal, because I’m going to jump off it. I am not some damn hero for not dying from breast cancer. (The real hero in that is science!) I also don’t want anyone to put me on a pedestal for talking about metastatic breast cancer. Shit like that is a distraction. Talk about metastatic breast cancer, and the need for research and real change in the breast cancer narrative.

The downside of making regular folks out to be heroes is that eventually the magic evaporates and what’s standing there is a regular person with regular flaws.

So, luckily, UPMC Health Plan edited me in a way that’s true to me, AND I got to mention METAvivor.

This is What a Runner Looks Like: Lara H.

It’s surreal to think almost 15,000 people watched this almost 2-minute clip of me TALKING. When the video first posted, I felt so uncomfortable and batted off any praise like a fly buzzing by me. Make it stop, make it stop, make it stop. Stop talking about me and go visit METAvivor. 

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I am not looking to be anyone’s inspiration, I’m really not. That puts a lot of pressure on me to keep deliverin’ the goods, and I don’t have the patience to feel weighed down by unrealistic expectations. This also isn’t me fishing for compliments. But you are! I relish that my friends admire me, and I don’t take that lightly. I wouldn’t be friends with them if I didn’t admire them either.

I know I signed up to do this, and I exposed the name METAvivor to almost 15,000 people. That’s all I wanted to do, and I can tell that the buzz around my video is already quieting down on social media (thank GOD). I just want the conversation be about metastatic breast cancer and the 114 that die in the U.S. every day from the disease. Instead of being wowed by the messenger, focus on the message. 🙂

I’m sorry for feeling uncomfortable about the exposure and not knowing how to react to people telling me they cried.

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Would I do something like this again? Uh, probably not, unless they let me link to METAvivor or talk more about metastatic breast cancer. But do something like this just to talk about myself?

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RIP Maggie

You know, it’s hard to believe but at one point in my life, I used to be afraid of dogs. Yeah, me. Afraid of dogs. I had a couple of bad experiences with dogs as a kid, and as a result, I became an adult who was afraid of dogs.

In walked a beagle named Maggie.

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Oh how quickly I became a dog convert after my parents brought home Maggie the beagle.  I lived at home for the first year of that beagle’s life. I couldn’t find a job after college graduation, so I lived at home. During the day, I’d watch Maggie and when my stepmom came home, I’d take her car and go to my job at Blockbuster.

I can’t believe I was only 23 years old when she graced all of our lives with her presence. After 14.5 years on this planet and as a member of my family, Maggie has crossed the rainbow bridge.

Maggie was a very good girl.  She was full of sass and attitude, and I loved her very much.  When she was a wee pupper, she liked to bite the crap out of the cuffs of my jeans. It didn’t help that I didn’t realize in my early 20s that I needed to buy petite length, so she had a lot of jeans to sink her teeth in.

When she was still a puppy, but I thought she was big enough to be in the backyard unattended and off leash, she proved me wrong. She slipped through the deck posts and went running!  I had to jump over the deck and RUN after her. I mean, I ran like freaking Flo-Jo. I caught her and I remember my parents standing at the front steps, laughing their butts off and clapping at my efforts.

That wasn’t the first and last time I had to chase her. I might be a long distance runner now  but I have never been (and certainly was not then) a sprinter, so short-distance running hurt.

After I left her for the first time for a long period of time, my parents picked me up from the airport. I followed them in from the garage up the stairs to the kitchen. I remember Maggie greeting my stepmom and then my dad. When I came in, SHE ACTED LIKE SHE DIDN’T EVEN SEE ME. I was shunned! The next day, that dog peed in the house three times, despite not having had an accident in the house for several months.

One day visiting my dad, I was heading toward my car when I heard my dad screaming from the backyard, “LARA, COME HERE. I NEED HELP.” First, I thought my dad was having some sort of a heart attack, so I went running to the backyard. Here in turns out, Maggie had found a body part of a rabbit she killed the night before. She was running around with it in her mouth, growling at my dad who was trying to yank it from her mouth.

I took her for a walk once and a rabbit scurried past our path. Maggie reacted so quickly to chase after the rabbit that I was scared my arm was going to pop out of place. She whipped me across the street like a rag doll.

When I got my own dog, Boomer, I brought her to meet her “aunt” Maggie.  There’s a seven year age difference between Boomer and Maggie, and old dogs typically don’t care for the young pups.

Maggie tolerated the young, bigger dog. Boomer really tired the old girl out, but as you can see, Maggie seemed to have a good time.

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One time, I came up to my parents house and didn’t bring Boomer. When Maggie saw that I wasn’t with the overgrown puppy, her demeanor completely changed. She was overjoyed and exuding happiness that it was just me. If she could have done a jig, that beagle would have done it.

When my parents retired to Tampa, I was very sad to see the ole girl go. I am glad I got to see her in 2014 when I went down for Thanksgiving. I recently got to see her Christmas of 2016. I made sure to hug her lots and tell her what a good girl she is.

While Boomer is MY first dog, Maggie holds a special place in my heart as the dog who turned me into the crazy dog lady I am. She had loads of personality, and she made friends wherever she went. My parents spoiled her more than I probably spoil my own dogs. She had a good life.

I think the worst thing about dogs is that they don’t live nearly long enough. I will know this all too well when my own doggos cross the rainbow bridge and meet up with their “aunt.” Somewhere, where all the good dogs go, Maggie is chasing rabbits, tracking voles and getting into as much mischief as her heart desires.

Rest easy, Mags. You were a very good dog indeed.

Year in Review

I know it’s probably odd  to do a year in review post when I haven’t done much blogging in the first place. I guess that will mean I have a lot to share here… maybe?

This year started off with a major surgery, which definitely set the tone and pace for the first part of the year. I knew the recovery would be difficult, but holy heck, it took me longer to bounce back than I thought it would. When I was cleared to start running again, it felt like I was starting over at zero. In all actuality, I probably was starting over at zero after five inches of my abdomen was opened and closed recently. Right now, the five-inch scar doesn’t look nearly as bad as it did at the beginning of the year. I rarely even notice it’s there anymore.

My running this year could be accurately described in one word: slow. I signed up for my second marathon, which I completed in early November. Between my work schedule and the weather, my heart wasn’t really engaged in training for this marathon compared to the previous year when I ran Columbus. My second marathon saw me adding 30 minutes to my previous marathon. While I am proud of the fact that I finished in Indianapolis, I know I could have done much better if my heart had been in it. I’m not going to make any excuses. If I wanted to, then I would have found a way.

This year I learned that I have to fall back in love with running before I attempt to do another marathon. For a brief period of time, I thought I was going to sign up for Pittsburgh Marathon 2018. When Best Boyfriend Ever reminded me that work was going to take up most of my time for the first three months of 2018 (something I had told him several times but yet, I needed him to remind me), I made the correct decision to sign up for only the half.

Time to get back to the basics and focus on getting stronger. When strength comes, speed will happen.

The biggest change this year had to do with my job. A recruiter had reached out to me via LinkedIn about an opportunity with PNC, and I jumped so hard at the opportunity I might have given myself whiplash.  I really and truly loved the work I was doing at my previous job, and I could have honestly kept doing that until the cows came home. I loved being an investigator.

What I couldn’t deal with and the number one reason why I left: the hours. Granted, several of my co-workers definitely billed more hours than I probably did, and they are still there.  All that mattered at that job was meeting deadlines, which meant kissing some nights and weekends good-bye. I didn’t want to do that and felt myself burned out more times than I could count.

I’m not opposed to ever working nights and weekends. I know I  am going to have to do that for the first three months of 2018. I will do whatever I have to do to make sure the job gets done. However, unlike at my last job, I know the crazy busy schedule will end and things will calm down for a good period.  I just couldn’t tolerate it being crazy busy every day, every week, every month with no end in sight.

I take pride in my work and skill set. I love figuring things out and coming up with great finds. I always want to do the best I can. But I need my nights and weekends to recharge, relax and get myself ready to tackle the new work week with a fresh set of eyes.  Opportunities to do that at my last job were few and far between.

While I am disappointed that my last job didn’t work out given how much I loved being an investigator,  I don’t regret my decision to leave whatsoever. I would make the same decision over and over again. I am now working at a great company and opportunities here are endless. The most amazing thing is that I am learning a completely new skill set, and I am feeling challenged every day.

Next year, my primary focus will be learning and becoming the absolute best I can be at being an internal auditor. I already know my lunch times will consist of studying for the CAMS and spending some free time taking extra courses in BSA/AML. I cannot wait to deep dive into this world, like I am almost giddy. I never could afford to go back to school to get a master’s degree, so in a way, I am getting the additional education I always wanted.

This year also saw the final nails put in the coffin that was my relationship with the Ex (yeah, that was a weird sentence).  For awhile, the Ex was my free dogsitter when I went out of town, but that’s now over with. I know he loves Boomer and Mal, and he even paid for their vet plans this year, but that’s come to an end. He has his own family now, and he’s probably married as I type this. He was a much better Ex than he was a boyfriend for the last 3 or 4 years of our relationship.

It was one thing when he was single or just dating, but he has a family now. While I would have no intentions or desires to meddle in his personal life or get him back (hahahahahaha omg hahahahaha), I don’t want to have any involvement with married exes. That way leads to drama, and I want no part. I will let him know if something happens to Mal or Boomer in the next year or so, but from now on, the Ex is staying in the past along with all the other relationship ghosts rattling in my closet. I wish none of them ill will (well, maybe the stalker), but that doesn’t mean they need to occupy any part of my life now.

I don’t like making New Year’s Resolutions, so I just make the same one every year: read more books. I actually read more books this year than I have in years! I think that goes to show how uncluttered and relaxing this year has been for me.

My focus for 2018 will be to be the best I can be at my job, advocate even more for metastatic breast cancer, get back to the running basics and remember why I loved running in the first place, and spend as much time with the best boyfriend ever. He makes me happy, and if I make him just a fraction of how incredibly happy he has made me, then 2018 is looking to be a good one for the two of us.

If anyone read this entire book I just wrote, congrats. I’m impressed.

 

Do as I say, not as I do…?

Three years ago, I wrote a blog imploring parents to not fade away from the pictures. I had a strong emotional reaction to the realization that there are only four pictures of me and my mom. Four. She hated having her picture taken, and most pictures taken of her, well, she’s not smiling.  If my mom is smiling in the picture, then there’s a good chance alcohol was involved.

My blog resonated with a lot of folks who saw themselves in my mom. I have had friends tell me that my blog woke something up in them, and now, they get in the pictures with their kids. I am so proud of that, really and truly.  I am glad I was able to reach out to parents and convince them that years from now, their children will only see them, not any of their so-called flaws.

I have a confession to make: I am just like my mother, really and truly.  I look like her, walk like her, and have the absolute same disdain for being photographed… like her.

I made a gallows humor joke to my friends that if I die, my loved ones will find it hard to find decent photographs of me. Instead, they’ll have to make due with all the fantastic photographs I have taken of others. To be honest, it was a joke, but after I said it, I might be okay with this idea anyway.

I hate having my picture taken, and I honestly believe it’s why I started taking pictures in the first place. I didn’t want to be in them. It is definitely why, whenever I’m photographing an event, I am sympathetic toward people like me who hate having their picture taken.  If it’s unflattering, I’ll delete it or take a new photograph.

When I see pictures of myself, I cringe at my uneven skin or never perfect hair. I just see flaws. I view these pictures as a photographer and someone who doesn’t necessarily always like what she sees.

In recent years, I have tried to be better about being in the pictures, especially when my nieces and nephews are around. I take silly selfies with them. I act weird in photos with my dad. I think the last photograph I took with my dad really sums up our relationship:

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There are very few pictures of me and my ex, which used to bother me but now, hell that isn’t a bad thing, LOL. I’m a-okay with how that turned out.  I don’t want the same thing to happen with my boyfriend.  He makes me so happy I feel like I radiate smiley faces and heart emojis from my very core.

I don’t want to disappear from the pictures, just like my mom did. I’m a damned good photographer but I’m not photogenic. Maybe one day, I’ll come to the same revelation others did reading my blog from 2014.

 

 

 

30 years

This month, it’ll be 30 years since my mother died. Gotta say, it feels surreal that she’s been gone for this long. My mom, she missed pretty much everything in my life, minus my birth. She was definitely there for that one. After that, my mother missed my First Communion, Confirmation, high school graduation, college graduation, first job, first heartbreak, buying my first house, so on and so on.

She wasn’t there when I had breast cancer. More than anything, I missed her while I was going through treatment. I wanted my parent there so badly. Just because I don’t remember doesn’t mean I don’t miss her and have a mom-shaped hole in my heart, which will never go away.

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This is what she just missed in my life. My two brothers, each of whom have kids, also missed out having our mother in their lives.

Metastatic breast cancer is a thief. It’s a dirty dirty thief. It stole my mother, and I’m doing something about it. Once again, I’m raising money for Metavivor. Every dollar you donate will go toward researching metastatic breast cancer. This year, I decided to run 30 miles this year – one mile for every year she has been gone.

That’s right – 30 freaking miles. I’m doing a marathon and then 3.8 miles before.  The date will be November 18 – be there or be square, and watch me hobble toward this bonkers goal of mine.

If you can donate, then you can do so here:

https://secure.metavivor.org/page/contribute/larahuffman30

If you cannot, I understand and would be very appreciative of anyone who can share my story and my link.

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.

The Affordable Care Act

When I was six months old, I had three benign tumors removed from my body. According to my dad, I had one on the top of my head, on my back and in my groin.  Before I could even crawl or walk, I became someone with a pre-existing condition.   During my senior year of college, I had a benign tumor removed from my right breast. Before I even graduated college, I had established a pre-existing condition for tumors in my breast.

When I graduated college, I didn’t have a job lined up and worked part-time jobs in retail. My dad kept me on his insurance for as long as he could, and when I had to get off his insurance, I had catastrophe only coverage until I got a job in my field.

For as long as I could remember, my dad stressed to me that I always needed insurance because if I had a gap, I would have an impossible time getting coverage again because of pre-existing conditions.  Since my body had the tendency to form tumors for some unknown reason. I had a pre-existing condition since I was six months old.

I have wanted to go back to school for my master’s degree, but could never figure out a way to do so while maintaining health insurance.  I could not risk having a gap in my coverage. While I did not quite understanding the intricacies in health care insurance in my early- and mid-twenties, all I knew was that I could not have a gap.  I stayed at jobs that I didn’t want to because I needed healthcare insurance coverage.

Since 2010, I have undergone more medical tests and surgeries than most have in their entire lives. I have had the following: a lumpectomy, seven rounds of chemotherapy, full thyroidectomy, 35 rounds of radiation, a laparoscopic procedure to drain an ovarian cyst, a double mastectomy, four months of reconstruction, a tissue expander exchange surgery, a superficial cyst removed from my right fake boob, and a major surgery to remove my right ovary and the aforementioned cyst that grew back and doubled in size.  In addition to all of these procedures and surgeries, I have had countless doctor’s office visits and blood draws, as well as a handful of CT scans and MRIs.

My first chemotherapy – the least expensive option and the one all insurance companies insist that doctors try first – ended with me going into anaphylaxis. The remaining six chemotherapy treatments were the most expensive ones – Abraxane

I. Am. Expensive. To. Keep. Alive.

I never asked for this. I don’t revel in this, and I would trade this body of mine for one that does not do this. Seriously, I would trade in a heartbeat. My body forms cysts and tumors – sometimes malignant but the majority have been benign – without warning or explanation. Maybe there’s a reason or condition that I have, but as of right now, I don’t know.

A refresher on the ACA and the protections it was designed to provide:

This protection gave me the most peace of mind:

“Insurance companies can’t set a dollar limit on what they spend on essential health benefits for your care during the entire time you’re enrolled in that plan.”

My insurance company cannot drop me for being too expensive. I can focus on being healthy first and foremost, not worried that the next surgery will cost me my health insurance.

This protection gave me comfort and relief:

“Under current law, health insurance companies can’t refuse to cover you or charge you more just because you have a ‘pre-existing condition’ — that is, a health problem you had before the date that new health coverage starts.”

I am not married, and I own a home. Heaven forbid I lose my job (please God, do not let this happen), I am on my own. Sometimes events happen which are out of our control. Illness and chronic conditions are not punishments for misdeeds or moral failures. Sometimes bad things happen for no reason, and that is terrifying to admit and understand. I don’t know when the next cyst or tumor is going to come. I would like to think I am done with them but history has demonstrated that won’t be the case.

If I lose my insurance but still need a surgery or treatment to get myself back to good health, I either have two options: bankruptcy caused by medical bills or just not having the surgery or treatment because I don’t have a literal money tree in my backyard.  Men and women in the U.S. are forced into bankruptcy at an alarmingly frequent rate because of medical bills.

With or without insurance, being sick is costly. Co-pays, missed time from work, gas to doctor’s appointments, parking fees, deductibles, medication, so on.

When I come across comments online from other Americans who don’t know that “Obamacare” is also the same as the ACA, or believe that people without healthcare are just lazy folks who don’t work hard enough, part of my soul dies a little. Good health is a gift, not a guarantee.  I have yet to come across someone bitching about “Obamacare” who is lower- and middle-class and have gone through extreme medical trauma and hardship.

Despite having scars from literally the top of my head to my knees, I became a marathoner. I have finished 10 half marathons, one marathon, two 10-mile races, and numerous 10K and 5K races, well as other distances.

You know what made all of those races possible?  Answer: access to healthcare, which includes surgeries, medication, chemotherapy, radiation, scans, whatever.  If I have the ability, then I am always going to strive to be a runner first.  I know I’m always going to be the one who has “the problems,” or who seen as “sick all the time.” I don’t want to be that person. I want to be a runner who kicks ass and takes name.

If the politicians allow lifetime caps and pre-existing conditions to come back, then my dreams of running marathons in cities all over the country or world will disappear.  I want to live a life full of purpose, goals and accomplishments. If my insurance company is free to impose lifetime bans or drop coverage for me for whatever reason they want, then I will be the person that “Obamacare” opponents hate: someone on Medicaid.

Damned if you do, damned if you don’t.

Another Surgery, Another Scar

My right ovary: 1980 to 2017. Rest in peace.

The surgery has come and gone, and now I am walking around with one less cyst and one less ovary. They have been expertly removed from my lady parts, and I am the proud owner of a 5.5-inch incision. 

This incision extends from my belly button and an inch into my… special area. The doctor stapled the incision together, and my metal buddies will be evicted tomorrow. My scars tend to fade after two years so my vertical reminder of January 10 should be nifty.

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Not pictured: the entire incision because this is not that kind of blog.

For this surgery, I had my first experience with a nerve block. The hospital’s pain team sold me  on this by telling me the block helps minimize the use of opiods and speeds up recovery. 

Sold! 

I vividly remember tripping hardcore on morphine after my mastectomy. I remember that I had a conversation with someone who wasn’t in the room. After that happened, I asked the nurses to please get me off morphine asap.

My wish coming into this surgery was to not recreate that experience. Of course I didn’t want to be in pain but I’d rather not be tripping. It’s not fun. I wanted to find a less mind-altering pain relief than morphine.

Unfortunately for the nerve block to work, I still experienced stabbing pains in each side as they jabbed giant needles into me. I screamed and proceeded to cry. Learned later they didn’t wait long enough to let the meds make me all loopy and not care about the giant side stabbing.

Oh well.

I woke up in recovery and learned I was on a morphine PCA.  At least it wasn’t a drip but it was still the dreaded morphine. I vowed to refrain hitting the green button as long as the pain allowed. Because of the nerve block, I got my wish.

I stayed in the hospital for two days. My lady doctor told me she was impressed at my progress and eager to get out of bed. Thanks to the nerve block and a nurse who understood how much I wanted to get off morphine, I made a handful of trips down the hallway, shuffling with my two IV poles and then with  my consolidated and heavy IV pole.

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Seriously. It was a heavy pole.

She had no problem sending me home on Thursday. 

It’s been a week since the surgery, and I am doing better than I was led to believe after this surgery. I take Advil during the day and the pain meds at night. I don’t move much, and every time I sneeze, I feel like someone slapped my incision. When I get up from a sitting position, I groan like an old lady and have to take a second to straighten myself out.

My ex was kind enough to watch the dogs for me as I recover, and I am beyond grateful. I do not think I would be in as decent shape as I am now if my 50- and 100-lb dogs were around me. I get them back on Friday. I do miss their company.

I don’t know if I am going to be off the full four weeks and then part time the next two weeks. That all depends on my doctor and how she thinks I am doing. I imagine the insurance company wants me back sooner than she does. 

Part of me agrees with them because time off means my finances take a hit, while the other part of me is screaming, “conquer that ever-growing to read pile you created, you damn fool!”  

I guess I am not used to resting. What a “weird” problem to have. My job and running take up so much of my time that resting is so foreign to me. I always feel compelled to be doing something. I like being challenged.

Until I am told otherwise, I am going to chill out.

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What is this rest thing of which you speak?