cancer

Deep thoughts by Jack Ha-… Lara

Sometimes, living with stage 4 breast cancer and working full time, feels like living in two different worlds. I have one foot in the “normal” world, and I have the other foot in CancerWorld. I am not a full time cancer patient yet, and that fact never leaves the back of my mind.

I am so grateful that I am still able to keep working, and I truly believe being able to still work full-time job allows me some non-cancer time. At the same time, at the end of the work day, I am mentally and physically drained, as if I am using all the energy I have to perform my job and do so well. Come 5 o’clock, my brain sounds like a long, drawn-out beeeeeep.

At the beginning of the year, I look at my vacation time and occasional absence time and wonder, “Hmm, can I use these vacation days for actual vacation days, or should I save them in case something happens in a couple of months and I need to take time off?” I’m torn between wanting to be optimistic but feeling like I should be pragmatic and prepare myself for potential emergency.

All of this shit is just exhausting. I am coming and going to the pharmacy for my medication, or the hospital for my monthly Xgeva shot and monthly bloodwork. Don’t forget – these medications come with side effects because of course they do. On top of that, I have to get scans every 3 months to monitor my cancer and a year brain MRI for my tumor. I see my oncologist every 8 weeks, and I have other specialists to monitor my thyroid, etc.

I juggle all this and still work full time. By the end of each work week, it looks like a tornado came through my kitchen. I’m just so dog-damn tired. I live alone, which can be a blessing and a curse. I’m glad nobody sees the state of what my house looks like the majority of the time, but then again, it’s just me responsible for cleaning this up. If I could fire myself, I would, but then that would leave Boomer and Mal responsible for cleaning anything up.

I know I can ask for help, but I carry this insane amount of guilt with my illness. I am so damned lucky that as of right now, the cancer is just in one spot and I’m stable. As far as I know, the cancer in my sternum doesn’t appear to be motivated, and my brain tumor does not appear to be impeding my physical or mental capacity. Every damn day, I am grateful that I still have some semblance of health, but it’s like my battery is at 45% charged. I see others with stage 4 breast cancer who are doing so much worse and dealing with pain I have yet to experience.

So I hold back for asking for help because yeah, I’m fine. Am I fine, though?

Like I said, I have one foot in one world and one foot in another. I feel like I should know the answer to that. I’m gaining weight, and I know that my face is just aging. Most of my clothes don’t fit me. My eyebags have bags. I’m new to chronic illness and fatigue, and I’m pretty sure I’m not handling it in any awe-inspiring way.

Maybe I’m fine? It varies day by day, minute by minute, scan by scan.

Such is the life of an oligometastatic cancer patient.

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.

Some Type of Normal

For the first time in almost two months, I went for a run today. Well, it was more like a “jog” than a run based on my effort and time. Still, it does not matter. I put on my running shoes, and I moved this body of mine 3 miles around the Northside of Pittsburgh. I decided to stay in a relatively flat area because I am nowhere in the shape to conquer hills.

I went down the path on River Ave and just focused as much as I could on my form and breathing. When I run, I can clear my head of all my worries and anxiety. This run was different because I wanted to be even in more touch with my form, my breathing, and my general sense of being.

With each step, I made sure to step as light-footed as possible. I don’t want to be hard on my knees, ankles and shins, especially since Aromatase Inhibitors are brutal on bones. By the time I reached around Heinz Field, I began feeling pain in my ankle. Never in my life have I ever had problems with my ankles. If I had to guess, my AI was the cause of that ankle pain.

Since my hysterectomy, I have only managed to walk 2 miles at the most. I ran 3 miles today! My pace was 13:40, which is 2 minutes slower than my pre-MBC time. Honestly, now that I am dealing with metastatic breast cancer, every completed run is a win. Besides this blog post, there will be no more comparison to who I was as a runner before MBC , because that Lara is gone and she ain’t coming back. I won’t waste time mourning something I can no longer change if only I trained hard enough.

I don’t have the time.

This is a new normal, and I’m going to adapt to it. I used to to say I took up running because I wanted to see what my body can accomplish after cancer showed me how my body failed me. I was wrong. I was so wrong. My body didn’t fail back then. It did what it does – it formed cysts and tumors. I see it clearly now, and it came to me during my run today

My body, this ever-involving flawed vessel that carries me around, is amazing and capable of so much. It endured the violent onslaught of early stage cancer treatment. It… I have ran thousands of miles, finishing races that most people don’t even try or can do. My body has been beaten up, both by illness and by my own making, but I endure. I have fucking endurance.

Don’t get me wrong – I don’t think I can beat stage 4 cancer, and this is not where I’m going with this. My goal is to endure for as long as I can, and it is going to be accomplished by one, slow run at a time. I’m going to keep moving and stay upright for as long as I can, and when it’s time to rest, I will know I gave it everything I could. The miles I log will tell my story.

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.

So Much Love

Ever since my Stage 4 diagnosis earlier this month, I have honestly felt like I have been living in a waking nightmare. How is this real? I cry a lot, and I’m often stricken by fear and anxiety whenever I think about the enormity of having metastatic cancer.

Am I going to make it to 45?

Will I be able to outlive my dogs?

Will I see all my nieces and nephews graduate?

How much time do I have left before I can no longer work?

I try my best not to let the fear overtake me but I do acknowledge that there is nothing wrong with trying to come to terms with my mortality. I have no desire to live in denial. However, I have to remind myself that I cannot afford to live whatever time I have left with one foot in the grave. That’d be the real tragedy of this disease.

Whenever these thoughts and emotions get to be too much, I am doing my best to lean into the love that I have been shown. My goodness, I have been showered with so much love and care that it has made me cry. This time, happy tears though.

To the surprise of absolutely nobody, I was a giant nerd in high school and had maybe 3 or 4 friends. My hair always looked like a frizzy mess, and I wore glasses covering up half of my face. (Why weren’t glasses trendy when I was in school? Whhhhhyyyyyy?) My stepsister, who is my age, was the popular one, and I absolutely resented that if anybody knew who I was, I was known as only her stepsister.

I got bullied a lot, and after awhile, I believed the bad things said about me. I was more inclined to believe the bad and second-guess the good. Sad thing is, I still do it. My instinct whenever I receive a compliment is either to: a.) make a joke, or b.) completely ignore it because acknowledging it makes me so uncomfortable.

If you compliment me or show me affection, IT TRIGGERS SOME SORT OF FIGHT OR FLIGHT RESPONSE IN ME.

This trait of mine might have been quirky before my cancer recurrence, but now I am finally realizing that these lies I have told myself are apparently not true. Who would have thunk? Did it take a metastatic cancer diagnosis to finally snap me out of this “haha, I’m a nerd and nobody notices me” mindset?

Don’t get me wrong – I still do not like attention, and I will not be seeking any spotlight. I don’t desire fame, and this will not change. Once I recover from surgery and adjust to my new normal, my focus will be on researching my own disease and advocating for research.

Friends, loved ones, coworkers have expressed such raw, genuine emotion to my news. Tears have been shed, and I have been on the receiving end of so much love and kindness. I have been drowning in my own fear and sorrow, and I have been reminded dozens of times over that I am loved. Friends and loved ones have shown up to take me to appointments, sent me meals, money, and have contributed to my Huffman Rules fundraiser.

I am so unbelievably grateful, and words cannot adequately express how thankful I have been. All these years where I have believed I have been flying under the radar – turns out, I’ve been popping up on radars here and there. Oh no, my cover is blown!

From the bottom of my icy cold heart, thank you thank you thank you thank you. I, of course, hope that once I heal from the surgery and have been on a steady endocrine therapy, I can get back to some semblance of normal. I want to go back to work. I definitely now want to go on vacations that I have been putting off. I want my siblings’ kids to know without a doubt how much I love them.

I have a lot to do.

Get Up Swinging, or just get up?

On Friday, I went into the hospital for my complete hysterectomy, which marks my umpteenth surgery. Honest to dog, I have lost count how many surgeries I have had. I know I am in the double digits, but I would have to put pen to paper to figure out just how many times I have had surgery. My friend Amy and I joke about how many times we’ve both had surgeries. I feel like I should have a punch card, and she thinks we should have a hospital wing named after us.

The gyn oncologist was able to complete the surgery laparoscopically, and now I have four new stab, er, surgery wounds. My abdomen honestly looks like an abstract work of art. Instead of brush strokes, it’s just scars, radiation burn, and stretch marks.

What message do you believe the artist is trying to convey?

Hmm, the message I’m receiving is surgery. Just a lot of surgery.

The gyn oncologist didn’t encounter any complications, and I got released after spending one sleepless night in the hospital. I can never ever ever sleep when I’m in the hospital. I ended up texting a friend on the West coast around 1:30 am in the morning, and then watching episodes of American Greed on CNBC.

I am now home recovering. I am not allowed to drive for two weeks, and I cannot lift anything more than 10 lbs for six weeks. My boyfriend has been taking great care of me, even though I know I am driving him crazy. I have a hard time relaxing and asking for help, so I putter around my 1st floor a lot instead of just laying down and relaxing.

I know sooner than later, I am going to start feeling the side effects of this surgery: mood changes, hot flashes, and fogginess. I am grateful I have ability to take time off work to recover from this surgery and adjust to this new normal for me. My managers at work have been absolute freaking fantastic toward me and what I am up against. Their support has taken a giant load off my shoulders, and they have made it crystal clear that my first priority should only be my health and recovery.

This week, I should be completing radiation simulation. What is radiation simulation, you may ask?

Positioning is extremely important in radiation therapy. Your body will be positioned carefully in order to get the best radiation treatment. You will be in the same position during every treatment, and you will have to remain still. To stabilize your position, you will probably be asked to lie in a special “immobilization device” on the treatment table.
There are different kinds of immobilization devices. Some look like a cradle; others look like a foam box that is shaped to your form. You will not be trapped or closed in. You may be asked to lie down in a custom-shaped mold that just touches your back and sides; or your treatment center may use a “breast board” that places your head, arm, and hand in a fixed position. Unfortunately, no padding can be used on the treatment table or positioning devices because that makes your treatment position less precise
https://www.breastcancer.org/treatment/radiation/types/ext/expect/simulation

Also this week, I have an appointment with my medical oncologist to discuss what AIs I will begin taking. Now that I have had my hysterectomy, this should make the discussion on what I can take a little easier. With AIs (aka Aromatase Inhibitors, or endocrine therapy), I am definitely going to experience side effects and this will require an adjustment for me.

None of this is going to be easy, and there will be tears and frustration. I cannot promise I am going to be the same Lara that I was before, but I will reach out for help when I am struggling. I may get angry and mourn the life that I used to have. It’s okay to not know what to say to me or how to act around me. I don’t know what to say or how to act either. This is new territory. I am not going to “beat” this, and I will be in treatment for cancer until the day I die. I am not a cancer survivor. Now, I just want to be a thriver.

I may not get up swinging, but I will do whatever I can just to get up.

My 9 Wishes

A couple of weeks ago, I shared 9 breast cancer-related wishes to mark the 9th year since I was told I had breast cancer. Much to my surprise, my friends asked me to make the status public and complete strangers actually shared it. (Wuuuut). So, to kick off another Breast Cancer Awareness month, aka Pinktober, or Stinkober, I want to share these 9 wishes again. However, this time – I’m expanding on these wishes. Get ready for some links, analysis and probably a lot more curse words. I am who I am.

I have 9 wishes I want to make to mark the 9th year since I was told I had breast cancer:

1. I wish for nobody to play the stupid FB “awareness” game for breast cancer this year. It’s dumb, and it fills me with rage when I see it. I see red, not going to lie. My disease isn’t a fun cutesy game.

I have written about this before and I know I’m repeating myself. I don’t care. I’m also going to reshare something Lisa Bonchek Adams (who died from metastatic breast cancer) wrote about this in a January 17, 2013 blog post:

Anyone who has breast cancer and uses your FB status update as an indicator of whether you support their cause is not very enlightened. When I rank “how to help those of us with cancer,” sharing one of these paragraphs as a status update is the lowest possible method of showing support. There are endless ways to do that. I think it actually is the opposite; sharing these status updates makes people feel they are doing something real for breast cancer causes when they aren’t.

I’ve also had it with the “I’ll bet most of my friends won’t share this post” attempt to guilt me in to sharing something like “share this if you think domestic abuse is awful.” “Share this if you think autistic kids are special.” Well yes, actually, I believe both of those things. And just because I didn’t share them as my status update doesn’t mean I do NOT agree with the statements.

Just don’t do it, please. I’d rather you do nothing than share that.

2. I wish for everyone to think before you pink this October. Be mindful that the pink items lining the shelves are not doing anything for breast cancer. They are just using my illness to make some sweet sweet dollas.

Here are the questions that Breast Cancer Action wants anyone to think before buying a pink item (see here for the full blog post):

1. Does any money from this purchase go to support breast cancer programs? How much?

For example, you’re at the grocery store, and you see a pair of pink ribbon socks by the register and you think, “Aw these are cute.” Pick up that pair of socks and look at the packaging. Does any money of your purchase go to … anything? Is there a mention of a charity, even if it’s one that’s problematic?

If the answer is no and that pink ribbon item is 100 percent purse capitalistic greed, do me a favor – don’t buy it. Too many companies profited on the deaths of so many.

2. What organization will get the money? What will they do with the funds, and how do these programs turn the tide of the breast cancer epidemic?

3. Is there a “cap” on the amount the company will donate? Has this maximum donation already been met? Can you tell?

4. Does this purchase put you or someone you love at risk for exposure to toxins linked to breast cancer? What is the company doing to ensure that its products are not contributing to the breast cancer epidemic?

3. I wish for the ability to bitch-slap anyone wearing a “save second base” or “save the tatas” shirt and not be arrested. That’d be awesome. I’m talking a slap like Soap Opera level slap.

I wrote “My Disease Isn’t a Cutesy Slogan” 5 years ago, and my feelings have not changed.

Since I had a double-mastectomy, does that mean I somehow failed since mine weren’t saved? Does that mean I am less of a woman, since I technically don’t have breasts anymore? My body image after my double mastectomy has completely changed, and it hasn’t been for the better. When I see “save the tatas” or “save the boobies,” I am constantly reminded of what exists under my shirt — scars, stretch marks and silicone.

These cutesy or provocative slogans offend me because they reduce women to a single body part — our breasts. The body part that could very well mean our death if the cancer spreads from the breast to other organs (aka stage 4 or metastatic breast cancer). It gives the clear message that the focus should be on saving our ability to be sexually attractive to the opposite sex. Heaven forbid you lose the body part that makes others feel attracted to you, because if you lose your sexuality, you lose your worth.

4. I wish for the media to report on cancer and metastatic cancer ACCURATELY. Nobody dies from breast cancer – they die from metastatic breast cancer (ie when it has spread to other organs). When it’s spread to their brain or lung, it’s still breast cancer.

Nobody ever dies from breast cancer. They die from metastatic breast cancer, which is when it’s spread to a distant organ. It is important to accurately report that someone has died from metastatic breast cancer, so the general public knows there is a difference between breast cancer (contained with the breast) and metastatic breast cancer (spread).

The Guardian reported on Jackie Collins’ death in 2015 but made no mention of the word “metastatic.” The BBC also did not mention the word “metastatic.” Recently, the news reported on the death of news anchor Cokie Roberts, whose family released a statement saying she died “due to complications from breast cancer.” I found little to no mention of metastatic breast cancer or recurrence in the news surrounding her death. She was a veteran news anchor – given her profession, you’d think there would be an accurate reporting on what actually killed her.

There needs to be actual acknowledgement of what kills people when they die from this disease. They do not die from breast cancer, they die from metastatic breast cancer. How can we educate the general public if we don’t even use the proper terminology?

5. I wish that my friends who have stage 4 breast cancer can slap early stagers who call them mean or bitter. I realize two of my wishes are related to slapping people, and I’m okay with it.

Rethink Breast Cancer shared the statistic on their Instagram page that 20 to 30 percent of people diagnosed early stage breast cancer will be re-diagnosed with MBC. Y’all, so many early stagers lost their damn minds.

One person commented: “I think you should honour how this post harmfully triggers many of us. I understand you’re trying to educate but I think there’s a better way than this.”

Yeah…. I’m going to let Judit Saunders field this one and it explains why I feel like stage 4 patients should be given a pass to slapping people:

SO, let me digest what you just said? Because a FACTUAL STATISTIC that many women face as their REALITY is “triggering” & hard to digest we should silence & simply erase any evidence that it exists??? Let that sink in…What in the actual bloody fuck is happening??!! We have regressed this badly with the division between the ebc and metastatic community?? Now, when I’ve been advocating for this disease since having my own metastatic recurrence I feel as though I am fighting for these ill informed-pull-the-wool-over-my-eyes-i-need-to-be-sheltered-by-reality-or-else-I’m-sad population & they have zero clue how our actions may one day save THEIR lives!

And

Did anyone not think that maybe if this disease wasn’t deadly then all you early stagers over there popping your Ativan due to being “triggered” wouldn’t be fearful anymore because people would no longer die? Just stop and THINK about it. THINK…EMPATHIZE…and then THINK about it some more. I don’t know how to make this more understandable. I don’t know how to make it clearer?! I have plenty of early stage friends who get it and stand united with the MBC community, but then when comments propagate to try to shut the MBC community up…ya, you’ve picked the wrong gal for that because I am done. Respect is earned and it’s a two way street. However, many comments simply want us to stop talking about it. We need to hide under a rock and just die apparently or else we have caused people to feel “triggered.” Hypocrisy at it’s finest… Ignorance at it’s peak… Stupidity in it’s lowest form.

See? Don’t you agree that Judit should be able to slap people? Read more of her righteous rant here.

I get being absolutely scared out of my mind of the idea of a recurrence. I get that. Sometimes that fear has paralyzed me, and it’s probably one of the main reasons I got my tush into counseling. It’s a lot. How-the-freak-ever, I still have a heart and the ability to empathize, and I would NEVER tell anyone with stage 4 to stop speaking their truth because they’re doin’ me a frighten. How inconsiderate do you have to be to think that’d ever be okay?

“Excuse me, ma’am. I know you’re a young mother with three young children, but could you please stop talking about your terminal diagnosis? It’s really bumming me out.”

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Just because you don’t like a statistic or a statistic scares you, doesn’t mean that the statistic goes away if you ignore it. Nope, still there. Deal with your fear, shut up, or at least think about what words will come out of your mouth next. Might I recommend therapy?

6. I wish for more people to know that MAMMOGRAMS DO NOT SAVE LIVES. They detect cancer. That’s it. There is no evidence that mammograms have saved lives.

An August 6, 2005 article in The BMJ reported that a US case control study showed that “Breast cancer screening in “real world” situations is not effective in preventing mortality.” The author of the study found, “We observed no appreciable association between breast cancer mortality and screening history, [regardless of age or risk level].”

Nine years later, a February 12, 2014 Reuters article reported that, “A new study has added to growing evidence that yearly mammogram screenings do not reduce the chance that a woman will die of breast cancer and confirms earlier findings that many abnormalities detected by these X-rays would never have proved fatal, even if untreated.” The study, which studied 89,835 women aged 40 to 59 over a 25-year period and was published in the British Medical Journal, “found no reduction in breast cancer mortality from mammography screening . . . Neither in women aged 40-49 at study entry nor in women aged 50-59.”

I am not saying that anybody should stop getting mammograms. There’s no really other way to get your screening. What I am saying is that we need to see mammograms detect cancer – that’s it. Mammograms do not save lives.

7. I wish for everyone to realize that early detection does not always mean you “beat cancer.” There are so many women whose breast cancer was caught early stages who went onto become metastatic. It’s not about when you catch the breast cancer, it’s about the tumor biology.

Catching breast cancer early surely does help, but it is not a guarantee that your cancer will never come back metastatic. I personally know many women whose breast cancer was caught early stage and who later were diagnosed with metastatic breast cancer. Some of those women have since died.

An estimated 20 to 30 percent who were diagnosed early stage will be later diagnosed with metastatic breast cancer. However, we don’t know the exact numbers because Surveillance, Epidemiology and End Results (SEER) does not track information pertaining to a metastatic breast cancer recurrence. SEER tracks those who were diagnosed Stage 4 right off the bat (aka de novo). The Metastatic Breast Cancer Network explains it this way:

My friend Shirley was diagnosed with early-stage breast cancer in 1991. Her cancer came back 12 years later—she has been living with Stage IV breast cancer for the past 13 years. For statistical purposes, Shirley and other patients like her are tallied as successfully treated for early-stage breast cancer. Only upon their deaths will they be counted as metastatic breast cancer patients.

The 20 to 30 percent statistic could be higher or lower, I can’t say for certain. If I had to guess, I would say the stat is probably much higher. I do know that until we know all the data, how could we ever say for certainty that early detection saves lives when we don’t know what happens to the woman 7 or 15 years later?

See here for more information.

8. I wish for everyone I know to understand why I don’t call myself a survivor or say I beat this, especially now that I know I have a genetic mutation. I’m NED (no evidence of disease) but my body works against me. I don’t see this as a battle or a fight. This is my body, and this is what it does.

I recently wrote about my mutant diagnosis here.

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.

9. Finally, and this is a special wish because I used to believe I’d be gone by the time I was 40 like my mother – I wish for continued good health for as many years as I can and to never ever take it for granted while I have it.

[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 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].

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.