Carcinophobia: The Fear of Cancer

How Phobias are Born

One of my first memories as a child was standing by my grandmother’s side as she lay on her couch trying to communicate with me.  I was four years old and could barely understand most people anyway, but she was even harder to understand because she was going through chemotherapy treatments to fight cancer.  She was very weak, and the energy in the room was so bleak I can almost still feel it today.  She would be the first in a line of many of my family members to lose a battle with cancer.

My dad had Non-Hodgkins lymphoma when I was about eight or nine.  It was a long time ago, and I was too little to understand the full weight of the situation.  I knew my dad was sick, and he stayed at the hospital a lot.  For the most part, I was sheltered from it, and then one day he stopped going to the hospital and everything was better.

So We Meet Again

About a year ago, I called my dad to wish him a happy birthday and found out that nearly thirty years later, he had lymphoma again.  Stage four.  That was not a good phone call.  I panicked, I cried, I drank.  I wished I could be little again so that I wouldn’t clearly understand the meaning of the word cancer.  Ignorance really is bliss.

After a few doctor visits, including a trip to the Mayo Clinic (cue choir of angels), the prognosis was fantastic.  They weren’t even going to treat the lymphoma until it started to interfere with his quality of life.  It was such a slow-spreading cancer, he was free to live a normal life.  Ten entire months passed before his lymph nodes swelled up enough to bother him.  The immunotherapy treatment worked so well, his lymph nodes shrunk the first night!

Unfortunately, the maintenance medicine he had to take was causing problems with his digestion.  He was losing weight, unable to keep anything down, things like that.  It took the doctors three months to figure out what was going on.  There was a fancy word for it, but basically, his stomach wasn’t emptying, so he was severely malnourished.  It would be a simple fix, basically a gastric bypass.

The Upside Down

During the procedure, they found a mass.  I wasn’t worried at all.  My dad had been dealing with cancer for over a year at this point and had taken every test and scan known to man.  Doctors knew my dad inside and out, literally.  If there was anything serious going on with my father, something would have shown up.  One of the doctors would have noticed something.  We would have known.

It was probably my overconfidence that everything was going to be fine that made the diagnosis of a second cancer even more devastating.  Until that moment, I didn’t even know a person could have two different cancers simultaneously, or that certain cancers were undetectable even with our modern technology.

Apparently I’m creating cancer with my consciousness.  Now if I could only figure out how to use my powers for good instead of evil…

Signet Ring Carcinoma.  Three words I wish I’d never heard of.  It’s a rare, aggressive form of cancer, and it’s treatment-resistant, meaning there’s nothing they can do.  The surgeon gave my dad a prognosis.  It wasn’t good.

I don’t think anyone should know when they’re going to cross over to the other side of life.  Some people cope better when they know.  I’m not that person.  Tell me I’m going to live to be a hundred, I don’t care if you’re lying, just say it.  That’s all I want to hear.  Nobody knows when they’re going to die because that’s how it should be, so don’t go ruining ignorant bliss by estimating an expiration date.  Unless that surgeon is the Grim Reaper, he can’t possibly know, so why set off someone’s countdown?  Fuck. him.

For the next two days, I was in a haze.  I was angry and scared.  And so sad.  My mom and dad are a million miles away and I couldn’t possibly imagine what they were going through.  They had just moved down to Tennessee less than a year ago.  My dad finally retired from the steel mill, and they were all set to live the rest of their lives drinking moonshine with a mountain view.  This was not part of the retirement plan.  I was so overwhelmed for them, in addition to my own feelings as the daughter of a cancer patient.

This is still a new and ongoing situation, and the thoughts in my head are so raw and so chaotic, I’m still trying to wrap my mind around all of this.

It Can’t Possibly Get Any Worse

Two days after finding out that my dad was not going to live forever – which is dumb because I thought everyone I loved was going to live forever – we discovered a lump in my husband’s lung.  He hadn’t been feeling well…fever, chills, night sweats, that sort of thing…and it had been going on for over a week.  Per ‘the book’ they ran some bloodwork and a chest x-ray, and that’s how we found it.  Of course, with my dad’s situation on my mind, I panicked.  His doctor told us it could just be a shadow, and that helped a bit.  I mean, it was going to be okay, right?  Just a shadow.  It took about a week to get the CT scan and about four more days to hear the results.  Unfortunately, it wasn’t a shadow, there was definitely something in there, and we would need a PET scan.

I know what kind of tests my dad went through.  I know what CT and PET scans are for.  Cancer is trying to take away everyone that matters to me.

I felt personally attacked.  I spent hours trying to retrace my steps to see where I’d messed up my karma.  If I could figure out what I’d done to bring this drama my way, maybe I could undo it and the people I love wouldn’t have to suffer.  I wanted to believe I had some control, but I clearly didn’t, and that really pissed me off.

They say waiting is the hardest part, but I STRONGLY disagree.  While we were waiting for the PET scan, I had hope, you know?  Maybe this was just an infection or scar tissue.  Maybe this was a common, completely harmless nodule.  People get them all the time.

I would argue the hardest part was getting the results of the tests. The nurse calling to say “Your PET scan came back abnormal, we’ll need to get a biopsy,” was way worse than waiting.  I would’ve given my left nipple to rewind time and go back to just a few hours before when I was waiting and still had hope.

Based on the activity on the PET scan, it could be stage three lung cancer.  Yeah, the results were definitely the hardest part.

It would be another week before we’d see a lung specialist, who would order the biopsy.

I felt scared, confused, hopeless, helpless, terrified, stuck, nervous, anxious, worried, angry, sad, sick, pathetic, guilty, tired, exhausted, stressed, shaky, picked on, slammed, overrun, bullied, shaken, shocked, deflated, depressed, lost, doomed, disadvantaged, damaged, wrung, used up, depleted, empty, pushed, pulled, numb, spent, overwhelmed, bombarded, weak, and defeated.  In that moment, I felt that everyone I loved was being taken away from me.

Intrusive Thoughts

I’m usually not one to take people for granted.  I know how lucky I am to have the people I have in my life, on all levels.  I know how lucky I am to be married to such a great guy.  He’s my protector, my provider, my co-parent, my entertainment, my sounding board, my debate rival, my own personal stand up comedian, and so much more.  Everything good in my life is because of him.

I kept having these horrible, intrusive images of his funeral pop into my head.  Sitting around the dinner table, I would see him fading away into an iridescent image of himself.  These uncontrollable thoughts made it feel like I already lost him.

I worried about what he would have to go through to battle stage three lung cancer, and how would my kids cope, and what would I tell them if he couldn’t win the battle?  And if he couldn’t win the battle, who would hook up our trailer for the camping trips, or make us laugh so hard we couldn’t breathe?  Who would yell at the tv when the hockey game was on?  Who would comfort me during a panic attack, or calm tensions when us girls were getting emotional with each other?  How would I homeschool the kids if I had to work, and would they be alright with being sent off to school in the middle of such a life crisis?  Where would we live? How would I pay for all the medical bills if I was left behind on my own?  I didn’t even know what kind of funeral he would want, because we’re too young to have planned that far ahead!

Anytime I said it was going to be okay, things just got worse.  At one point I even wondered if I was the one causing all of this for my dad and my husband, by jinxing the situation with my ridiculous positive affirmation.

Thinking positive was useless, because sometimes things really aren’t going to be okay.

Not Coping Well

People kept telling me I was “stronger than I know,” and that no matter what happened, I would “be okay” because life goes on.  And all I could think was ‘Damn, these people don’t know me at all!”  I think some people are stronger than they know, but I also think that some of us just aren’t.

I lost twenty pounds in two months.  I couldn’t eat.  One time my husband was cooking dinner for the kids and I actually had to leave the house because the smell of food made me want to vomit.

I did a lot of walking.  I walked circles around our neighborhood, trying to get some anxiety out.  The first couple of days my legs hurt pretty bad, because my body is more conditioned for chilling on the couch.  I walked so I wouldn’t freak out in front of the kids.  I walked to clear my head.  I walked to talk privately on the phone with my support people while they tried to calm me down, I walked to give my husband a break from me.

I hated myself for not being stronger and more level headed.  I felt selfish for getting so wrapped up in my own emotional reactions, and believe me, if I could’ve made it stop I would have.  My mind was out of control.  My dad and my husband were dealing with cancer in one aspect or another, and I couldn’t hold myself together long enough to be supportive of either of them.  I felt so much guilt that my husband was waiting to biopsy a mass in his lung, but he was the one who had to reassure me that it was going to be alright.  I spent two months straight in total meltdown mode, while he was forced to keep it together because one of us had to have our heads right to keep the household functioning.  I would have loved for it to have been me.

I put on my favorite pair of sweatpants and a t-shirt, and I didn’t wear anything but that exact outfit for two entire months.  Leaving my comfortable, oversized chair was overwhelming.  I just played funny movies on repeat, night after night, insisting my husband and kids sit with me because it was the only thing I could think of to do.  Anytime my husband left my side, I would be irrationally anxious that I couldn’t see him, because keeping him in my sight reassured me that, at least at that moment, he was alright.

I couldn’t do any ‘normal things’ because nothing was normal anymore.  Every thought, every event, every fun thing we could possibly do was stained with cancer or the fear of cancer.  I kept thinking, what if this is the last time we get to do this together?  What if this is the last time we go here together?  I didn’t want to think like that, but the intrusive thoughts and images were so strong and persistent.  It’s the worst feeling to worry about the people you love suffering.  And I don’t want to be left behind.

I cried myself to sleep every night and woke up every morning with my stomach in my throat.  Mornings were the worst because I wanted nothing more than to stay in the dreamless, oblivion of sleep, but instead I was being forced to consciously deal with the drama cancer was drowning us all in.  I had no idea what the day ahead would hold, but I knew it wouldn’t be good.

Dad was down to a hundred twenty-nine pounds.  Just months earlier he was around one-eighty.  Feeding tubes, nurses and a million different therapists were in and out.  Dad was coping with two separate cancers while malnourished and recovering from surgery.  If that’s not a fucking hero, I don’t know what is.  Mom was down there processing this all alone.  I wanted to go see my parents, but we had our own doctor appointments and cancer tests we needed to stay in town for.  I think a selfish part of me was a little relieved about that.

Because I had this wonderful, healthy image of my father in my mind.  The last time I saw him, life had been good and things were so simple.  I didn’t want to lose that.  Knowing he is sick, and seeing it are two different things.  In my emotionally overwhelmed mind, I thought if I didn’t see it, then it wasn’t really happening.  I could hold on to that last great image of him, and pretend all the bad things weren’t happening.

But bad things were happening, to everyone I loved, and the adrenaline coursed through my veins every second of every day.  I couldn’t breathe, I couldn’t eat, I couldn’t put a simple thought together.  I couldn’t focus long enough to read or write.  Can we take a second to appreciate how severe that is?  I have never been unable to escape in a book.  I’m basically a professional escapist!  For the first time ever, there was no escape.  Not one.  It had been almost two months of being wound tight, and there was no end in sight.

I Get By With a Little Help From My Friends

My husband has a small circle of friends, and they would call often to check on him and offer words of encouragement.  We didn’t tell a lot of people outside of family what we were going through with our cancer investigation, but it’s inevitable that some people found out.

I was humbled by how many people cared.

A neighbor of mine, Cindy, who is coping with fresh wounds left by cancer in her own life, found the time to check on me.  She was a comfort because she knew first hand the devastation cancer can bring.  She hugged me and cried with me, and for a moment I didn’t feel alone.  I will always be grateful for her kindness.

My husband’s boss would periodically check in with him, and his wife Katie would check on me.  The level of compassion and understanding that came from my husband’s workplace was above and beyond anything I could ever hope for.  This was one of the hardest things we’ve ever been through, coping with my father’s cancer diagnosis on top of being told we could be looking at stage three lung cancer, but his administration somehow managed to make it just a little less overwhelming.  And it helped to know Katie was over there rooting for us.  I will never forget that.

I reached out to a long lost friend I hadn’t spoken to in about seven years.  We lost touch after our kids didn’t go to school together anymore.  Tiffany’s husband defied the odds of a devastating cancer diagnosis and won the battle against the disease.  Tiffany didn’t hesitate to comfort me, provide info, offer help, and offer to put me in touch with contacts if necessary.  No “Where have you been for seven years?” No “Who the hell even is this?”  No judgment of any kind, just pure kindness and compassion.  I want to be more like her.

My friend Autumn would text often.  She’d listen, sympathize, and then encourage.  She always made me feel less alone.  It was nice to have someone to vent to.  Everyone needs a friend like Autumn.

My sister in law, Kate, would send virtual hugs.  Here’s what I loved about that…I already had a group of people that supported me by letting me vent and cry and talk until I ran out of things to say.  It was so nice to also have someone who let me know she was rooting for me, without me having to rehash everything.  It was nice to just be thought of.

My mother in law, Cathy, would call to check on me.

My sister, Natalie, who is also trying to wrap her mind around what’s going on with our dad, would still find time to offer encouragement for my husband.

And my own mom, who is going through her own personal cancer hell, still found the strength to be a rock for me.

Okay, so if Jesus and Budha had a baby, it would be my cousin David.  I talked to him for hours and hours many times throughout this experience.  He’s got some beautiful takes on life and death, and the life experience to claim major street credit.  David had a very calming effect on me, and I always appreciated those moments talking to him, because they gave me a break from the darkness.

My Aunt Lilli, who is more like a sister to me, would tell me everything was going to be okay.  I know she was worried, but her positive attitude about everything going on was something I held tight to in the dark.  And when I would cry and panic, she would reassure me that I would never be alone.

I credit my best friend, Christine, for keeping me alive.  Every, single, day, she would send a simple quote.  And every single one of them was reassuring me it was going to be okay.  This one was my favorite.

These became a lifeline for me.  I needed them.  This simple daily routine was something I could count on, a constant during a time when everything was changing.  She had all the right words to make everything okay for a moment.  I screen captured a few of her wise words and would use them as an affirmation.  I thank God every day for my best friend.

Claudia is a friend of mine who gave me hope when I had lost it.  During one of the low points, worrying about lung cancer, she told me about this infection called Histoplasmosis.  I had never heard of it, but apparently, it’s extremely common around the midwest, and you get it from inhaling airborne spores from chicken crap.  It shows up on a PET scan as a malignancy.  Most people never know they have it, and it goes away on its own.  Also, we kept chickens for five years, and just before all hell broke loose with my husband, guess what he had been doing?  Tearing down the coop.  If I was lucky, my husband just had chicken poop disease.

Are You Kidding Me With These Memes

What the actual hell?  What even is the point of posting shit like this?!  Most of us already know these things, and the ones who don’t won’t get it anyway.  Then there are those who are actively going through this, and let me tell you, having this float across your feed is like a flaming knife made of pure salt piercing through your heart!  If you’re not prepared, these can really take your breath away.  These words aren’t inspirational or thought-provoking.  I don’t need any more reality checks, thanks.  I’m already drowning in these facts.  How about you just post some pictures of your grandbaby and shut up?

Dr. Dickover

So we’re looking at possible stage three lung cancer, and we meet with the lung specialist who will be scheduling the biopsy.  His name is Dr. Dickover.  No shit, you can’t make this stuff up!  I’m looking for a Dr. Hopewell, or a Dr. Livestrong, or maybe a Dr. Don’t Worry Your Husband Will Be Fine, but we get Dr. Dickover.

And I’m so glad we did!  He was fantastic.  Knowledgable, professional, friendly, compassionate, and reassuring.  After the visit, we had hope that this was a simple infection.  He wasn’t worried at all, actually didn’t even want to discuss cancer at this point, which was a huge change in tone from the last doctor we had spoken with.  It would be another week before the biopsy, but at least during this week, we could wait with hope.

The Biopsy

This was it, the moment of truth.  The last step of the long diagnosis journey.  Two months had felt like a million years.  I couldn’t remember the last time I felt “normal” or the last time I looked at my husband without fearing loss with every fiber of my soul.  I can grow emotionally attached to a spider on a web outside, so you can imagine how emotionally attached I am to the love of my life!  It probably borders on unhealthy obsession, but that’s a whole different blog post.

So we get to the hospital on biopsy day, and they put my husband in a pediatric room.  It had Dr. Suess’s characters all over the wall, and I was like “Jackpot!”

We were under the impression that my husband would be under anesthesia for the procedure because they actually said: “you’ll be under anesthesia for the procedure.” Turns out, the radiologist needed him awake for the CT guided needle biopsy, because he needed my husband to be able to control his breathing.

The biopsy went well for the most part, but he did end up with a partially collapsed lung.

Afterward, the radiologist came in to talk to us.  He told us that we would need to wait for the biopsy results for any definitive diagnosis, but he could say with certainty this lump was not acting like cancer.  It had already shrunk significantly since the CT scan two months prior, and its current shape indicated a simple infection.

We got ready for the long wait for the final results.  They said it could be a week or two, but at least the radiologist’s words gave us peace of mind.

The next day, (What?!) Dr. Dickover called with the great news.  The cells in the lung nodule were not cancer.  He mentioned Histoplasmosis.  My husband has chicken poop disease.

That’s a Wrap

The nodule should disappear on its own if it hasn’t already.  We still haven’t had our follow-up appointment with the lung specialist, that’s scheduled for November, but we don’t mind waiting.  It’s just a technicality, we already know the story ends well.  We’ll follow up in three to six months for another CT scan, just to make sure the infection cleared up.  I’m optimistic it will have, seeing as how it was already on its way down during the biopsy.  My family is happy to be off this roller coaster ride from hell.

Now I can focus on my dad.  He’s doing much better these days.  He doesn’t need his walker anymore, so all his therapists have finished their part.  He’s eating, laughing, and driving again.  He’s gained a minimal amount of weight back, and his ornery personality is still intact.  Same ol’ Dad.

There’s still a lot of living for him to do, and I plan to be a part of that.  I’ll get to see him this weekend.  It’ll be the first time since the diagnosis, and I’m grateful for the opportunity to hug such a bad-ass warrior.

The Lessons

I learned a lot of lessons through this whole nightmare.  I feel like I knew some of these things already, but needed to live them to truly understand the depth of these lessons.  I also feel like maybe the Universe could have found a less dramatic way to teach me these things.

People can be suffering in unimaginable ways that you will never understand.  I was at the store a few times, and I’m sure I appeared to be fine, but in reality, I was terrified of falling apart in public.  It took every ounce of energy that I did not have to spare, just to get a gallon of milk.  One stranger smiled at me as we passed each other.  Another stranger glared at me for accidentally blocking their path.  That look alone was enough to undo me.  I cried the whole way home.  My inside world was dark, and sad, and vicious.  When the outside world matches, there’s nowhere to go, and no more hope left.  Lesson:  Don’t be a dick.  We all have problems, let’s not make it worse on each other.

When we’re going through something hard, it’s easy to see everything through dark-colored glasses.  Everything can feel hopeless and scary, when in reality only some things are hopeless and scary.  It’s near impossible to see the bright side of anything, and that’s okay.  But I promise you, the bright side is there.  You’ll glimpse it when you stop filtering everything through the dark-colored glasses.  Lesson:  It’s easy to get lost in the depths of despair.  There is always a bright side out there, and it’s okay if you can’t see it for a while.  Take comfort in knowing it will be there waiting for you when you come out.

My circle is small because I just don’t have the energy to invest in friendships.  I’m way too introverted for that nonsense.  Just watching popular people exhausts me.  So when the drama hit, I was overwhelmed by the number of people that actually care.  I knew I could rely on my core group, the people who are with me day in and day out, but it was humbling to realize how many compassionate, caring people we are surrounded by.  I will never be able to thank these people enough. People that only know me through my husband’s job, old friends I hadn’t talked to in forever, complete strangers, like doctors, nurses, receptionists trying to comfort a crazy woman in a panic attack over the words “stage three lung cancer.”  (That was me, I was the crazy lady.  And medical professionals everywhere deserve a medal.)  Lesson:  No matter how alone you feel, people really do care about you.  There are people out there who are rooting for you to make it through your darkness.  I care.

“Stop assuming the worst!”  “Why do you always jump to the worst-case scenario?!”  “Can you stop being so dramatic for one second?!”  “Pull yourself together, you pathetic, useless bitch.”  “Get your shit together and stop being selfish, this isn’t about you!”  These are some of the things I would yell at myself in the middle of my spiraling.  In case you’re wondering, it didn’t help.  It just added to the chaos of the constant battle in my mind.  Lesson:  Thoughts can’t be controlled so easily.  When life is pounding you into the ground, it’s easy to join in.  Like your brain has mob mentality or something.  They say “don’t take your thoughts too seriously.”  I only wish it was that simple.

“This too shall pass” felt like a crock of shit when I was in the darkest part of this rabbit hole.  Sure it’ll pass, and leave me an empty shell of the human I once was.  (I’m not dramatic…you’re dramatic.)  It wasn’t passing, it was dragging on for hundreds of years!  Okay, two months, but still.  You know what though?  It really did pass.  And it worked out okay for now.  There are more dark times ahead, for sure.  But for now, I’m going to enjoy the light.  Lesson:  It’s easy to feel doomed for eternity when you’re overwhelmed.  I promise you’ll have moments of peace eventually.  Never lose hope, because believing in something is better than not believing in anything.

After we got the all-clear, I expected to rejoice and celebrate.  But after being in fight or flight mode for so long it was hard to believe, just like that, everything was really going to be okay.  I felt nervous like the all-clear was a mistake.  Could it really be over?  Where was the relief?  I still just felt anxious.  Lesson:  It takes some time to decompress.

Everyone has felt the pain of cancer in some form or another.  So many brave warriors are out there battling for their lives and their loved ones are suffering right along with them.  So many people are out there waiting on results right now, wondering if their lives are ever going to be the same.  Lesson:  The situation I went through isn’t even unique.  My heart breaks for so many people.

And Finally

I went back and forth when considering writing this post.  The emotions are still raw from the cancer scare my husband went through, and I’m actively trying to process what’s happening with my dad.  It’s really hard to think about, and writing this was actually a lot more difficult than I imagined it would be.  I was gonna scrap it because writing about this wasn’t worth the pressure in my chest, the difficulty breathing, the tears, the refreshed anxiety over reliving a situation I’m trying to move past, and the pain of discussing another situation I’m trying to cope with.

But then  I saw this meme and it made me think.

Well, maybe that was a sign?  Or maybe it was just a stupid Facebook post.  I was still unsure whether there was any good reason to rehash this, and put it out there when out of the blue I get a text from someone who knew what I had been through.  She knows of someone going through a similar scare, and wanted to know who our doctors were.

I decided as upsetting as it would be to write this, and as awkward as it feels to put such private information out there, if reading this could help just one person not feel alone, then maybe my ongoing experience isn’t for nothing.  We should never have to do this alone.

Cancer Hotline: 800.433.0464  This is the number is for cancer patients.  It’s a free service operated by volunteers who have had cancer.  They try to match up the caller with an individual who has recovered from the same type of cancer.

American Cancer Society: 800.227.2345 “Cancer information, answers, and hope, available every minute of every day.”

 

Also, this is a great article to check out!

Why You Probably Don’t Need to Worry About Getting Cancer

2 responses to “Carcinophobia: The Fear of Cancer

  1. The biggest hugs to you!! A rollercoaster indeed x

    Liked by 1 person

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