breast cancer

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.

5 Stages of Grief

It has only been one month since my oncologist told me that I had metastatic breast cancer, and it’s only been a little over three weeks since my hysterectomy. Honest to dog, it feels like a couple months since all this began, as if I am in a suspended state. Between Covid-19 and my medical leave of absence, I have no concept of time anymore.

During this period of time, I have definitely cycled through the different stages of grief, which I imagine is quite common.

Denial
Anger
Bargaining
Depression
Acceptance

If you are like me and need a refresher as to what constitutes the 5 Stages of Grief, refer to this article on Psycom.net (link), which discusses the Kubler-Ross Model.

DENIAL – Avoidance, Confusion, Elation, Shock, Fear

I previously believed that denial involved only avoidance, and even thought at one point, “Well, at least I never visited the denial phase.” Boy, I was wrong.

During September, I had both a bone scan and a CT scan of my neck down to my special area. When the bone scan posted to MyChart stated that my sternum presented as potential metastatic disease, I had a delayed mental breakdown. I had an important meeting that morning, which I had to lead. I told myself that I could break down later. When it was safe, I ended up taking a half day from work because I went to a bad place.

Quite simply, I went into shock.

I swear, I knew that very day I was going to be stage 4 and that my cancer was back. I was already back in the chemo chair in my mind. I rocked back and forth in a corner in my bedroom, whispering, “I can’t do this” over and over again. My face went numb. My arms went numb and eventually, my hands went numb. I couldn’t

My loved ones who knew I was having a panic attack about this told me, “Oh this could be the result of your trip and fall.” I wanted to believe them and go along with their theory, and I eventually agreed it could be a possibility. I never really believed it fully, but I wanted to.

The fear that I felt that day will stay with me for a very long time. It’s the type of fear that consumes you and changes you. It definitely changed me.

ANGER – Frustration, Irritation, Anxiety

Oh, I have visited this stage and camped out here for a spell. Heck, I think I have bought a house in this stage, renovated it, and redecorated. I know this phase so well. I have felt angry, and why not? I’m allowed.

I did everything I was supposed to do to ensure that I didn’t suffer the same fate as my mother. I started getting yearly mammograms at the age of 25, and sometimes, I had to go twice a year. With every mammogram, I had an ultrasound done due to having dense breast tissue (aka fibrocystic breast tissue). I had multiple fiboradenomas, and multiple biopsies.

At the age of 30, doctors found my breast cancer at stage 1b. I “caught it early.” I went through absolute hell and back for almost 2 years – a lumpectomy, chemotherapy (including anaphylactic shock), radiation, double mastectomy, and reconstruction. Still, to this day, I experience legit flashbacks if I ever get lightheaded and dizzy because that’s the sensation I felt before anaphylactic shock.

I. Did. It. All.

My oncologist threw everything but the sink at me, and I came out of that period of my life scarred and shell shocked. I even had my oncologist repeatedly tell me that the odds of it coming back were so small because of the early stage and aggressive treatment. I did everything I could to prevent this, to not end up like my mother, and it still fucking happened. This should make me angry, and it’s okay to be angry. I’m not going to pretend to be someone or something I am not.

BARGAINING – Struggling to Find Meaning, Reaching Out to Others, Telling One’s Story

Man, if I thought I could bargain my way out of this, I absolutely would. For real, if I had something I could offer in order to not have this disease, then I would do it. “Lara, you will no longer have stage 4 cancer anymore if you give up coff-” “DONE.”

In all seriousness, I don’t consider myself all that religious, so I don’t typically hold conversations with God. I didn’t, nor will I ever, ask God why this has happened to me because why not? Me having stage 4 cancer is not some horrible tragedy. It’s genetics.

It might also be that I don’t believe that God gave me cancer, or that I have been set on some journey. (Whenever I read ‘cancer journey,’ I cringe. It’s a disease, not a trek in the woods.)

While I haven’t had any “WHY GOD WHY” conversations with a higher being, I have been struggling to find meaning in all of this. One of the reasons why I love(d) running so much is that it allowed me to be someone other than a cancer patient. I got to be a runner, an athlete. I wanted to test my physical capabilities, especially after my body betrayed and failed me.

Life as a cancer mutant with a rare genetic condition means I live a different life. I have had a black and white view of what this body of mine does, and this diagnosis has me wondering if it just all grey. Maybe my body didn’t fail me? Maybe my body did what it just does, and I just have to navigate these setbacks and accomplishments more graciously?

DEPRESSION – Overwhelmed, Helplessness, Hostility, Flight

According to the American Cancer Society, 1 in 4 people with cancer suffer from major or clinical depression (source). I have made absolutely no secret that I have dealt with depression before. After treatment for my early stage breast cancer ended, I suffered and I struggled with my life. I had to reach out for help when it got really bad for me in my early 30s.

An October 2, 2013 article on MD Anderson’s website provides the following symptoms of depression:

Feeling sad most of the time
Loss of pleasure and interest in activities you used to enjoy
Changes in eating and sleeping habits
Nervousness
Slow physical and mental responses
Unexplained tiredness
Feeling worthless
Feeling guilt for no reason
Decreased concentration ability
Thoughts of death or suicide

In addition to medication, MD Anderson recommended the following activities to manage symptoms of depression: psychotherapy exercise, and stick to routine. The article explained, “Following a routine can help you maintain a feeling of accomplishment and a sense of control, both of which can be negatively affected by cancer and depression. A routine can also help push an individual to engage in activities they wouldn’t necessarily be motivated to complete.”

I did end up doing all of those suggestions, and it worked for me! Once I got help, started running and dumped a horrible boyfriend, I got my depression and anxiety under control. I really did climb out of the fog of depression and learned to really enjoy my life.

Now… *waves around* this.

I am struggling with the enormity of this disease, and what it’s taken from me. When I read the symptoms of depression listed above, I can say that I can check off six of those items. What I have feared for so long has come to be. For so long, I have been absolutely frightened that I was going to end up just like my mother, and now that it has happened, I’m just a scared 40 year old who wishes she had her Mom.

Be rest assured that I do have a good network of support to assist me as I come to terms with my new normal. If I can get back to running, even if at a much slower pace, then that will help me manage my depression. I also think being off work right now is playing a part in my mood. I enjoy a schedule and routine, and I also appreciated the ability to not think about cancer for 8 hours a day.

ACCEPTANCE – Exploring Options, New Plan in Place, Moving On

What does it meant to achieve acceptance with a stage 4 diagnosis? I know and understand that my life is going to regularly consist of doctor’s visits, blood draws, scans, and sometimes surgeries. None of this will be easy, and I likely will regress back to the earlier phases more often than not. I truly believe that this phase will involve layers upon layers of events and truths that I need to accept, until I get to the final layer, the core: inner peace.

I have accepted that I have stage 4 breast cancer. It’s not like I have a choice, and I can somehow opt out of this. If I could, I fucking would. (Way too many people say that “cancer is a gift” and if that was true, I’d keep my receipt and return this.) This is my life now, and I can either fight my circumstances or do whatever I can to accept all of this and adapt. It’s not an act of bravery to accept my stage 4 diagnosis. It’s a necessity.

When I dig deeper, there are some hard truths that require reflection and acceptance. I accept the fact that I will die from this disease. I also accept that there is a possibility that I may not see my 50s or my 60s. I have to accept the fact that I may not even see 45, although I do hope that is not the case. This could all be out of my control.

As noted above, I want to achieve inner peace. This disease has forced me to rethink about what my priorities are and what they should be. I, for sure, want to figure out my new plan. I’m not going to figure it all out now. I can’t plan this out. I just have to let go.

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.

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?

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.

The In Between

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

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

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

I. Am. A. Mutant.

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

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

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

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

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

So I did a thing

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

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

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

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

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

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

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

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

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

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

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

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

This is What a Runner Looks Like: Lara H.

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

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

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

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

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

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