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.

Fundraiser

During my radiation appointment, MyChart sent me a notification that I had a new bill. Well, apparently all my bills decided to just gather together, hang out, and then pop up on my doorstep on the same day. When I saw the amount owed, it actually took my breath away.

I’m on short term disability until end of November, so I can’t break out my camera and try and earn extra dough. I’m not allowed to lift anything more than 10 lbs, so my 20-plus-lb camera bag is definitely off limits.

With the help of my friend Nancy, I created my first Bonfire campaign – the Huffman Rules campaign. If you want to help out a cancer patient, here’s your chance.

https://www.bonfire.com/huffman-rules/

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.

10 Years, 10 Days

September 22 marked 10 years since I learned that I had Stage 1b breast cancer. 10 days after that, I found out that my breast cancer has returned, but this time, I am stage 4. I have metastatic breast cancer, which means it’s treatable, not curable. I will be in treatment for the rest of my life, however long that may be.

Let’s back up a couple months. In early August, I tripped and fell during a trail run, and I body-slammed myself into the ground. Not only that, I was wearing a hydration vest with two detachable water bottles located at each boob. One second I was running and the next second, I found myself face first on the ground, feeling like I had the wind knocked out of me times 100.

My boyfriend ended up taking me to the ER, where the doctor ultimately diagnosed me with a chest wall contusion and a concussion. The chest X-ray and spinal X-ray didn’t show anything concerning.

In early September, I had routine bloodwork ordered by my oncologist done. He had been monitoring my rising CA 15-3, which kept slowly rising over the previous year or so. Dr. C didn’t seem concerned about it, but I certainly was. Dr. C knows cancer, but I know Lara. To ease my concern, Dr. C told me that he would normally just re-test the tumor markers in 3 months and see, but he knew I was very concerned. He said that he would order a bone scan and a CT scan to put my worry to rest. (Haha.)

Both scans showed potential metastatic disease in my sternum, and the CT scan showed a potential lesion in my T11. When I learned this, I did not take the news well at all, and why should I? I had the worst panic attack of my adult life and had to take off work for the rest of the afternoon. I went numb in my face, my abdomen, and I lost feeling in my hands. I knew that day this was it.

My loved ones repeatedly said, “No, no, no. These scans are showing the result of your fall.” Fair argument, and at times, I did want to believe it. Ultimately, deep down, I knew this was stage 4 due to the fact my tumor markers were high. I have always known this was going to happen because this is what my body does.

I had a bone biopsy of my sternum, and not going to lie, that was one of the most horrendous procedures I have had done. When the radiologist inserted the needle into my sternum to numb it, I screamed in pain. While screaming, I heard them say, “Be still!” Hahaha, fuck you. I’m doing my best.

Fast forward to present day, it appears that my cancer is contained in the sternum and has not traveled to any other organ. If that is indeed true, then that is a big WIN for me. (I learned a new term – it’s called oligo.) It means we can radiate the cancer in my sternum to high hell, and then I start taking an AI. No need for chemo for bone mets. My other “good” news is that the metastatic breast cancer is estrogen and progesterone receptive and Her2 negative. That means I have a lot of options in AIs. The goal is to get the cancer back to zero and keep it there for as long as possible with AIs.

Am I devastated? Oh God, yes. I am gutted. I cry a lot. This is my literal nightmare come true. My mom was also diagnosed with Stage 4 breast cancer when she was 40, and died before she turned 41. How can this not mess with my head? I am my mother’s daughter.

I have to take all this minute by minute, or hour by hour, or day by day. I have a great support system here to throw me a life preserver when I feel like I am absolutely drowning. My team of doctors does include a psychiatrist to help me deal with the emotional bitch-slapping that stage 4 cancer brings.

I guess this means Get Up Swinging is back. Instead of making one billion phone calls after each update, I just plan on updating this. I need to get back to my introvert ways, and keep my inner circle small. All these phone calls have left me just absolutely drained and exhausted. I understand people who care about me want to check in with me and make sure I’m okay, and I am very appreciative. I also want to eventually transition to an easier way to keep anyone who cares apprised of my health.

Plus, this will be the best way to document how I keep cycling through the 5 stages of grief, and vent about cancer-related topics that piss me off (i.e., inspiration porn, or calling cancer a battle). Also, OF COURSE I WOULD BE DIAGNOSED WITH STAGE 4 BREAST CANCER DURING BREAST CANCER AWARENESS MONTH. Argh. It’s like pouring salt in a large gaping wound.

So… stay tuned?

Running in the time of ‘Rona

For as long as I can remember, I have dealt with anxiety in some form or the other. The diagnosis of Generalized Anxiety Disorder has been stamped on my medical charts since my early 20s. However, I am not ashamed of it. This is who I am, and my brain is just wired a tad differently. I am also certain that anyone who meets me in person could pick up on the fact that I’m anxious after 5 minutes of conversation. I feel as if my anxiety is as much a part of my personality as much as my ridiculous ability to remember random movie or television trivia. I am who I am, and who I am is anxious.

Anxiety

My anxiety had a heckuva time after my cancer diagnosis, where every unfamiliar pain or ache led my brain to leap to the “YOUR CANCER IS BACK OH MY GOD” conclusion. It’s cliché, but it is true for me that anxiety is fear of the unknown. I started running in 2013 as a way to cope with my anxiety and well, just life.

I am never going to be that person who says, “Oh running is my therapy” because that is such a BS, tone deaf statement for anyone with actual mental health problems, like anxiety. No, therapy is my frickin’ therapy. Running is just one of the several tools I use to help manage my anxiety. While I run, my brain quiets and I’m not overthinking. It’s my meditation.

Enter Covid-19, and one of my tools to managing for my anxiety transformed into one of my sources of stress and anxiety, instead of my respite from them. Normally, I am a road runner. When the pandemic first began, I would try to avoid as many people as I could while running some of my common paths. However, other Pittsburghers would have the same idea as me, and I ended up playing the “excuse me” game to small groups of people either running, walking or riding their bike.

Whenever I witnessed people not social distancing or not wearing masks, I would feel a combination of anger and helplessness about them not following the rules. I missed running with my friends, and I was running solo. Why can’t they follow the rules?!? What makes them so special?!? Oh lord, this pandemic will never end….

As soon as I realized that after a run, I was routinely walking back to my car in a fit of rage, instead of my normal state of productive exhaustion, I knew I had to make a change.

I decided to switch from road running to trail running to stay away from as many people as I could.

avoiding-all-the-crowds

If you know me and my history of trail running, then you’d know this is a big deal because I am not really confident when it comes to trail running. Like, not at all. I have done a handful of trail races without actually having ever trained for a trail race. Unsurprisingly, I did not do particularly well at these races. In summer 2019, I signed up for three ridiculously difficult trail race. I completed two of those races, and the third one I gave up after the first loop (my first DNF – did not finish).

When I decided to start primarily running trails, I was signed up for a race in August that I knew would be canceled. However, I figured that it was good motivation to get me out there on the trails anyway. (Turns out, I was right, and the race was recently postponed until 2021.)  Regardless, this race that never was turned out to be great motivation to get me out there.

Trail running is hands down much more difficult than road running, and in the past, I have been discouraged from trail running due to that very fact. It is hard. The elevation gain, and terrain that can send you flying down a hillside face-first if you’re not careful, all make for an adventurous and challenging task. I’m a klutzy person in general, so someone like me trail running is asking for trouble.

These last months trail running has changed something in me and how I see myself as a runner. I really enjoy trail running, and at the same time, I’m still not very fast or good at it. Finally, I got to my moment of Zen about trail running: Who cares!?!

When I am running in the woods, I never feel so alone yet so connected to something bigger than me. As I huff and very much puff along the trail path, I can focus on what I hear and do not hear. I listen out for other runners or hikers on the path, or the sound of mountain bikes coming toward me at a speed I do not understand or wish to emulate.

The views I get to see on my trail runs are incredible and oftentimes, I just stop my watch and take in my surroundings. I rarely take pictures whenever I do that because I don’t believe I can truly capture what it is all I am seeing. It’s not just the sights. It’s the smells and the sounds. The symphony of birds chirping or birds rhythmically pecking at trees entertain me.

I like whenever I pass by spots where uprooted trees have toppled down the hillside. Sometimes the base of the tree where the roots are jutting out look like a creature straight out of Jim Henson’s imagination, and I expect to see a pair of sleeping monster eyes open from their slumber.

Other joys of trail running include spotting creatures I normally don’t see on the road. I have seen groundhogs, and been stopped in my tracks to wait for deer to leave the path. One time, a small feral black cat crossed my path. As soon as the little spooky kitty spotted me, it dashed the other way and I felt the opposite of cursed. I had to make a last second leap to avoid accidentally stepping on a tiny toad. Squirrels and chipmunks are a constant sighting, and they rustle the branches and brush alongside the trail as I run by. Sometimes I feel like I have been transported in a Bob Ross painting, even during a heat wave that’s making me sweat buckets at 6:30 am.

I don’t that many other people often during my run, and that’s been my saving grace during this pandemic. I do miss running with my trail buddies, but for now, I have to keep at this by myself for the time being. The time I am spending by myself and challenging myself at something that has been daunting to me for so long has been wonderful for my self-esteem. I can do hard things. Maybe when we’re allowed to have races again, I will sign up for more and actually do well because I am getting over my weird complex about trail running.

No matter what, I am kicking ass by just finishing these runs. It doesn’t matter that my pace is slow compared to others. Who cares? I am having fun, and my quads are getting even more massive (you can’t see it, but I am smirking with pride right now). I am a runner without a single race to train for, and what a change of pace this has been…. Um, pun not intended.

Hugging

If I had to describe myself, I could easily think of a long list of flattering, and perhaps some not-so flattering, nouns and adjectives. For example, I am a writer, a runner, a photographer, weirdo, a proud aunt, an awkward goofball, so on. One word you will never see on that list: a hugger. I am just not much of a hugger, and if given the opportunity between a hug and an enthusiastic there-there pat on your shoulder, I’m choosing the latter.

When someone hugs me, my social awkwardness immediately takes center stage. My body stiffens up, and I automatically start counting the seconds until I am free to move my body again.

My ambivalence, and sometimes active avoidance of hugs, did not develop over time as I have gotten older. Even as a young kid, I was not a fan of hugging. My dad would ask me, “Can I have a hug, Lara?” My response was always a firm “no,” and now and then, it would be an emphatic, “NO.” God bless my dad, he always respected my response and never forced me to hug him. He taught me an important lesson at a very young age, and I am grateful to him for that.

He, however, would tease me about my No Hugs policy, by saying, “When you get older, I am going to tell your future boyfriends that you don’t like to hug.” Joke was on him, though – due to my non-existent self-esteem and sometimes crippling anxiety, I did not date anyone in high school or college. Can’t tease me in front of someone who doesn’t exist!

While growing up, my one brother would now and then trap me in a bear hug for way longer than what’s socially acceptable. He recently asked if that was why I don’t like hugging as an adult. I assured him that it was not. Whenever he did that, it never felt like he showing me affection, and it was more like he was either establishing dominance over, just trying to annoy me., or a combination of both

I did have a moment in middle school where an unwanted hug made me wish the floor would open up and swallow me whole. My middle school hired a substitute teacher who used to teach at the Catholic school where I previously attended. In fact, this teacher was one of my brother’s teacher the year that my mother died.

Mrs. K was not a woman who could blend into any background. She was fairly tall, loud, and had a body type similar to Robin Williams’ character in Mrs. Doubtfire, which had come out that year. Since middle schoolers are assholes, myself included, that is what we called her behind her back.

She spotted me in a semi-crowded hallway and called out: “Lara?!? Is that you?”

My heart sank. I had hoped that she did not recognize me since it had been a couple of years since I attended Catholic school. Mrs. K enveloped me into a tight embrace, smooshing my face against her giant chest. As I heard my classmates snickering around me, I never wanted to disappear so much, and I went into my defense mechanism: playing possum.

Dead arms, stiff posture, and wide eyes, darting back and forth, looking for an exit.

Looking back, I understand that she was showing affectionate to a kid whose mother died not that long ago. However, as a 13-year-old child who had been bullied for years, the last thing I ever wanted was any attention being focused on me.

There are, of course, exceptions to my No Hugs policy. I hug my boyfriend, and basically do everything I can to invade his personal space when we’re hanging out. I love hugging him and can never get enough of his hugs.

 My other exception is that I will ask my nieces, nephews, or my friends’ kids if they want to give me a hug. Will it ever be one of those smooshy hugs that cause one or both parties to go “OOMPH” in joy, not a chance. Although my heart can sometimes be icy cold, I would never imprint my feelings about hugs to any kids. If a kid is a hugger and wants to show me affection, I am not that dead inside where I’d go, “Back off, kiddo.”

My youngest niece does not like to hug. Last time I saw her, I asked if she would give me a hug and she turned me down. I said, “That’s okay. Can I get a fist bump?” She turned that down! Whaaaat. Not going to lie, my pride took a hit on that one; however, I will always respect her wishes, like my father respected mine.

Fast forward to my double mastectomy in 2012, which left me with no feeling in my own chest. If I hug someone, I experience no feeling or sensation in the chest, and as a result, my neurosis related to hugging quadrupled. Am I hugging too tight? Do my implants feel like two squishy water balloons? Make it stop. Oh lord, when can this fresh hell end?

Thanks a lot, cancer!

Now, when someone goes in for a hug, I immediately go on the defense and angle my body so that all they get is a side hug. If I am feeling particularly affectionate, I will throw in a couple of pats on the shoulder.

Just a word of advice to the huggers of the world out there: if you’re going in for a hug and the intended target of your hug says, “I really don’t like to hug,” PLEASE DO NOT REPLY “Oh that’s okay” and go in for the hug anyway. This has happened to me so many times that one day, I’m just going to turn around and start running away to avoid the hug.  I am not playing hard to get- I seriously do not want to be hugged.

One time, one of my runner friends said to me, “I felt bad the one time I hugged you before I remembered you don’t like hugs. You looked a little terrified.”

“I probably was.”

As a non-hugger, I am a little hesitant about re-entering society because I know there are so many huggers out there, jonesing for a hug, looking for that sweet sweet physical connection. Between the fear of the coronavirus and my desire to not be hugged, I am going to be ducking and weaving any incoming hugs like a punt returner running back for a touchdown.

“Lara! It’s so nice to see you! Come here!”

Stutter step! Pivot!

“Lara, I have missed you!”

Juke!

Maybe in this coronavirus world, society will back away from hugs and revert back to bowing and curtsies. A girl can dream…

Almost Over That Hill

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

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

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

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

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

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

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

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

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

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

 Good thing for therapists, huh?

Insurance Companies are Vile

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

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

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

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

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

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

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

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

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

giphy (2).gif

The December Gallup poll also stated:

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

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

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

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

 

Richmond Marathon Recap

For my latest marathon recap, I thought I about adding some inspirational running quote meme at the beginning, but I couldn’t find one that perfectly summed up how I felt about this race. I am the World’s Okayest Runner, and I would like to explain why I no longer want to run stupid long distances anymore.

worlds-okayest-runner

I want to preface this by saying that I worked with a coach for this training cycle, and she was amazing. I would not have even gotten to the start line at the Richmond marathon without her guidance and training plan. I hope my thoughts and feelings about running stupid long distancdes do not cast any negative light on her or her coaching.

I thought I had a more difficult time with my long runs during this training cycle. The heat and humidity never seemed to relent, and I ended most runs feeling like I just went through hell and back. I know a lot of people will say, “Those runs just mean you’ll go so much faster when it gets colder!” However, when each run feels like a battle and you end each one feeling sweatier than you ever thought possible, it can affect someone’s motivation and by someone, I mean, mine. I just felt defeated.

A month and a half before the race, I injured my left shoulder and had to refrain from cross training and strength training. I honestly haven’t the foggiest on what I did to injure my shoulder, which is the same one I hurt a week before the Pittsburgh marathon. Unlike the Pittsburgh marathon, this 2nd go around with the shoulder pain lasted a lot longer and felt way more intense. I could still run and do my training runs since I wasn’t swinging my arms around wildly as I ran.

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The week before Richmond, I was finishing a track workout when my groin muscle felt tight but not pulled or anything. “Weird,” I thought that day but never gave it much thought. I had a pulled groin muscle 10 or so years ago, and this definitely did not give me the same “Oh Crap” feeling.

On Race Day, everything felt as good as it was going be. I did not wake up with any pain in my shoulder or groin. That second part turned out to not be true around mile 6 or 8 when I was making good time. My groin began to ache as I ran, and now and then, I shook my leg and hip out in a futile attempt to loosen something up.

The wind played a big factor in the race for me. While it wasn’t freezing weather or anything, it was chilly and the slightly above normal winds made it pretty darn cold at times. The absolute worst part of the marathon was the bridge, which ended up being the start of the Wall. As the wind whipped my face and made my fingers numb, I thought, “Well, this isn’t going to end the way you had hoped for.” All of us were running against the wind, and I am sure my eyes were not the only ones fighting watery eyes.

After the bridge, the Wall showed up, and from then on, it was a battle and I’m pretty sure I lost. My groin pain got worse, and around mile 21 or 22, the other side of my groin started hurting as well. I wonder if this is the result of the cold not letting up and my body never having gotten comfortable.

The downhill finish at the Richmond Marathon was supposed to be a welcome relief to runners at the end of the race. For me, the downhill finish line made my groin muscle scream, “ARE YOU KIDDING ME?” A volunteer coach toward the end saw my face and the struggle, and she ran with me for a short bit. I told her that my groin hurt, and she said, “After you finish, keep moving. Don’t stop moving.” The Richmond volunteers were absolute champs and amazing.

When I crossed the finish line, I unleashed what I was holding back for 18 or so miles. I started crying but not because I was overcome with emotion – I was overcome with pain. Some poor girl handed me my finisher medal and said “…. congratulations?” to me, as I took the medal from her.

I can now say I am a four-time marathonner, and that’s how it’s going to be for the time being. For a hot minute, I thought I would train for a 5th marathon in the spring and perhaps do a 50K race in June, and then say See YA to long distances. As soon as I crossed the finish line, my face stained with tears, I knew that Richmond would be my last marathon for the time being. Between the shoulder and groin, I am not convinced that I am built for stupid long distances.

I am burnt out and disheartened. No matter how much effort I put forth and how hard I work for a marathon, I keep getting the same results. I am looking forward to dropping down to half marathons again. Plus, my busy season at work will be kicking into high gear very soon (like, as soon as I get back from Thanksgiving break). I need to take away any voluntary stressors since work is more important than running.

The beauty of all this is I get to figure out what I want to do next, and then work on achieving that goal with a smile on my face and a spring to my step.

I want to end this recap by memorializing some of the cool things I saw during the Richmond marathon race:

  • A man dressed in an inflatable T-rex costume for the full marathon. From what I heard, he finished the whole race in that costume and in an impressive time.
  • An elderly man with a cane was in the middle of the road during mile 20 or 21. He was borderline heckling us. “I thought this was a race, but this might be the end of it because y’all are WALKING.” Haha, dude. Give us a break. This is a lot of miles!
  • This college-aged girl – who had been hanging out on a porch with a couple of dudes and cheering on runners for the race – shouted, “THAT IS THE CUTEST FUCKING DOG I HAVE EVER SEEN” at this middle aged couple just walking a golden retriever. TBH, it was a really cute golden retriever, and I totally get her intense response to the dog.
  • A DJ at one of the music stations was calling out runners individually by their Bib. I had the pleasure of hearing, “Huffman… rules. That’s right you do.” I gave a fist bump, a la John Bender at the end of the Breakfast Club.
  • My friends Abbie and Naomi at the end cheering me when everything hurt and I was questioning all my life’s choices. My friends are pretty damn awesome.

 

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.