Eat What Tastes Good During Chemo

eating during chemo

A few years ago, NPR ran an article featuring four tips to help a foodie get through chemo.  In the article, the author shares the four tips that she used when deciding what to eat while undergoing chemotherapy.  She emphasizes that sometimes you just have to eat what tastes good!  Here at Lacuna Loft, we thought that this advice was great!  There are so many articles out there telling you all of the anti-cancer properties of this and that and different food tips for chemo.  Once you’re going through chemo treatments though, sometimes you just have to eat what works!

My mother and I always loved a particular diet soda.  While she was doing chemo and radiation treatments, all of a sudden I noticed our beloved diet soda’s main competitor starting to appear in the fridge at home.  I couldn’t believe that she had made the switch!  I asked her about it, and she replied that the old favorite just didn’t taste the same anymore.  I experienced some of this myself, once I began chemo treatments.  While on a road trip with some friends to a wedding, we stopped at a restaurant for dinner.  I ordered something that I’d enjoyed before, but that time around, the food burned my mouth and was almost impossible to eat.  I kept asking everyone I was with to try the food, expecting that it was far spicier this time around or had some other component wrong with the food’s normal taste.  No one else thought the food tasted any different than it ever did!  Then it dawned on me…my mouth had been bothering me all day.  I guess I had pushed it to the back of my mind in hopes of enjoying the car ride without thinking of my ailing mouth.  Throughout the rest of the meal, I picked around from everyone else’s plate but nothing really tasted good.  When we left the restaurant I was still hungry.  On the way out of town we stopped by an ice cream place and I got a medium, hot fudge concrete (for everyone not from the midwest, think blizzard).

I ate a lot of ice cream while going through chemo.  Eggs were another go to meal for me.  I’m lucky enough too that both of those foods still taste pretty good to me now that I am a few years past my chemo treatments.  Other foods are still off limits though.  For instance, I ate at a Korean restaurant with some friends during chemo.  I still cannot stand the smell of what I ordered that day.  My husband and I also used to eat at a popular eatery every once in a while during chemo treatments…it was right across the street from the hospital.  It took a few months post-chemo for me to be able to even walk into that eatery without feeling nauseous.

Some of these preferences have gone back to the way they were before treatment and some of them haven’t.  I think it is just another one of those changes that cancer causes that needs to be embraced, not resisted.

Confessions Of A Cancer Patient

survivor guilt

I’m awake, for maybe the fifth or sixth time tonight. Like other nights, it’s a cold sweat that wakes me. I rise up and stare sleepily at the light that shines through my blinds. My body aches, there is no comfortable position to sleep in. I rise slowly so I don’t wake him, and I hear a soft snore that tells me he’s deep in a dream. The weight of my own body almost feels like too much and balance takes real effort. It’s a long walk to our restroom only about 6 feet away. I dampen a cloth and moisten my face and my chest. Sore still both from accessing the port and a deeper pain that I can’t shake.

I haven’t slept a full night in I don’t know how long. In the mirror, I see the reflection of a woman I still don’t recognize. Short fuzzy hair, darkened nails and a round face, moon face they call it; they, the others, like me. I don’t like this woman. I feel a pit in my stomach, a feeling that’s familiar. A cross between angry and sad, my eyes water. It’s time to make my way back.

The more I sleep, the less I have to think. As I lay back down, I hope the next interval comes further out. Maybe I’ll sleep until I have to get up with the kids, but it’s unlikely. I stare up at the ceiling wishing I could cry. I know if I allow myself to start, it could be hard to stop.

The silence is deafening, I lay waiting and the hours pass.

This happens almost nightly, sleep escapes me and I just lay here. I watch him sleep and sometimes catch a giggle. I stare and watch his face as it changes from serious, to a smile and then fades away as quickly as it came. I lay there and wonder what he dreams of so vividly, and I hope it’s of our son (or daughter) in heaven. My heart aches more now, so I imagine something different. A dream where he is a popular Star Wars character, now I giggle.

To be honest, it could be much worse. I’m already expecting good news from a future scan. In fact, yesterday might have been my last chemotherapy session. I feel a sense of deep guilt at that realization, so many fight for so long and here I am, possibly done. I don’t know if I’m ready for what’s next, this “New Normal” the cancer community talks about. What I do know, is it’s in Gods hands now. So, I leave it up to him.

What’s In Your Chemo Bag?

chemo bag

Dana Farber recently published an article about the items one survivor keeps in her chemo bag.  That got me thinking…what was in my chemo bag?  And what was/is in yours?

I always had a stuffed animal (usually my childhood bear), chapstick (really a must all the time), a bottle of water (I carry a Nalgene with me absolutely everywhere I go), layers (comfy sweaters for the win), headphones, my phone, a game book (logic puzzles were my favorite), an iPad or computer, and a notebook to take notes with when talking with my oncology team.

I am an avid reader but during chemo couldn’t get myself to focus on a book.  TV, movies, logic puzzles, and phone games because my go-to activities to distract myself.  I also spent a TON of time just staring around the room.

What about you?  What’s in your chemo bag?

Flashback #1: 10 Things About Cancer in Your 20s

cancer in your 20s

To celebrate our 2-year anniversary of being a nonprofit, Lacuna Loft is bringing back our top 31 articles from our archives!  The countdown to our top post is continuing today with our long awaited, top post, Flashback #1: 10 Things About Cancer in Your 20s, written by Cecilia. These 31 articles are the best of the best and we’re very happy to share them with you again!

….Let me start this off by saying that I read a LOT of Buzzfeed, which means I often think of things in lists. So when brainstorming my next blog post, I figured, I may as well post a list!

There is so much that changes in your life when you get cancer, regardless of age; but when you are diagnosed with cancer in your 20s, there is a whole set of other issues, scenarios, and such that you will encounter. Keep in mind, this list is based solely off of my own experiences & experiences I have heard of from fellow young cancer fighters. Also, I believe laughter is an incredibly healthy release, so while some of these will be serious, many will have a sense of humor behind them. I would LOVE to develop this list as well, so feel free to comment with your own experiences & your own items that you think should be on the list!…..…

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Read the rest of the article here!

Flashback #4: After A Mastectomy You Get New Boobs! Yay! Wait, Not Really

breast reconstruction

To celebrate our 2-year anniversary of being a nonprofit, Lacuna Loft is bringing back our top 31 articles from our archives!  The countdown to our top post is continuing today with Flashback #4: After A Mastectomy You Get New Boobs! Yay! Wait, Not Really, written by Karen. These 31 articles are the best of the best and we’re very happy to share them with you again!  The countdown continues next week!

….When I tell people about my mastectomy and breast reconstruction, I receive lots of support, many questions, and even some rude comments. The most frequent thing I hear from both women and men is “at least you will get perky boobs” (insert awkward laugh here)

For those of you who, thankfully, have not had a mastectomy or been close to someone who is going through one, you might think that this is going to make us feel better. It doesn’t! I understand that it is meant to be a supportive comment, but, I promise you, this is not a normal boob job. Yes, I did get implants to replace my real breasts, but that is where the similarities end………

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Read the rest of the article here!

Flashback #29: Free, Printable Puzzles To Take Anywhere!

puzzles for chemo

To celebrate our 2-year anniversary of being a nonprofit, Lacuna Loft is bringing back our top 31 articles from our archives!  This is Flashback #29! Free, Printable Puzzles To Take Anywhere! was written by Mallory. These 31 articles are the best of the best and we’re very happy to share them with you again!  The countdown continues tomorrow!

Chemotherapy areas, as well as doctors offices and waiting rooms, are often tight spaces.  You bring everything with you in a bag and as soon as your name is called or it is time to go, whatever you have taken out of your bag needs to be quickly grabbed and put away.  Everyone seems to have a preference for what activities they like to bring with them to pass the time in the doctor’s office.  Books are a great thing to stash away for these occasions…you can pull out your current story and quickly reintegrate into your favorite foreign land or fantasy world.  Sometimes though, the environment you are in may make it difficult to concentrate on reading….I found it almost impossible to read while sitting in a chemo chair for 6-8 hours.  There were just too many people chatting or coming and going to concentrate.  When I discovered that I basically couldn’t read while going from appointment to appointment, I felt instantly annoyed…and bored!

That is when I found puzzles 🙂  Free printable puzzles are wonderfully inviting and fun when needing to go from a scan, to the doctor’s office, to the lab where they draw blood, and then over to the chemo area!  The more challenging logic puzzles I needed to save for a day when no one would interrupt me with questions once I had something complicated about the puzzle finally sorted in my mind, but the simpler logic puzzles and sudoku were always my favorite.  A digital version of scrabble was always fun to play with the person along with me for the appointment too.

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Read the rest of the article here!

Radio Days And The Boob Bubble

young breast cancer radiation therapy

Outside. Directly opposite. Big Ben has chimed a big fat 9 am.

St Thomas’s radiotherapy unit. This is my home away from home for the next 23 consecutive days – excluding weekends – cancer doesn’t do weekends – thus resulting in my appointments being drawn out and clashing with my beloved Glastonbury Festival. Nooooooooo. To go during radiotherapy or not to go? That is the question.

I look around me at a sea of white hair. Bloody hell. Everyone’s so old. I don’t want to get that old. So old some of these patients look like they’ve been wheeled in from the set of Dr Who. Fossilised and mute. Why are you here?! What’s the point of prolonging your life?! What quality of life are you going to actually have? Yeh the heart’s still beating but everything else is buggered. I’d just like to reach 50 please universe. No more, no less if that’s not too much to ask. As I contemplate this, I notice an elderly patient smiles at me…. and doesn’t stop smiling at me.

Bridget is 80. She’s a sweetheart and there to have her pelvis done. She tells me her ENTIRE medical history, then lowers her voice to almost mouth the words…

“Once my radiotherapy finishes I have to stick several medical objects up my…….!!!!”

Get. Me. Out. Of. Here.

Her eyes light up, “I’ve never used a vibrator before.”

Silence.

Say something Lara!

“Well….. better late than never.”

Bridget gets called to her appointment.

Thank……………God.

It’s been two months since I finished chemo. Three weeks after chemo I had a re-excision – usually it’s meant to be 4 weeks but my surgeon fast tracked me so I had a chance of making it to Glasto. Priorities man. I love my surgeon. A re-excision is basically more surgery to remove a bit of skin in my boob that was touching the tumour. This is called the ‘margins.’ Imagine my tumour is a fried egg sunny side up. Which is appropriate really, seeing as my tits look like a couple of fried eggs. The tumour is the yellow yolk and the margins are the egg white. Everything has to be removed. The surgery is done using the naked eye. My dear surgeon thought he’d removed the whole fried egg in my first round of surgery (I had a lumpectomy.) But the pathologist (who’s job is to cut and examine the juicy lump of tumour tissue) found he’d only removed three quarters of the margins. So he went back in there and cut the last bit of the quarter out. The results came back clear. No traces of cancer. Boom.

Three weeks after the re-excision I go in for my radiotherapy pre-assessment. I lie on the measuring table. The nurses tattoo 3 tiny dots (the closest I’ll ever get to being cool.) One in the centre of my chest and the other two either side of my boobs. This is so the measurements are completely precise. Radiation is hardcore. It’s so strong that not only will it kill any cancer cells, it also kills the healthy cells and can potentially damage my ribcage and my lung as it zaps the shit out of where my tumour was and the area directly around it. It kind of reminds me of a microwave nuking my insides. This is why the radiotherapists don’t want to damage any more of me than is necessary, hence the exact tattooed measurements.

“Have you had an implant?” asks the nurse.

I snort.

“Do you think my boobs would be this small if I had implants?!”

The nurse titters “Yes you have a point” and carries on the examination. A confused look comes over her face.

“Mmmm there seems to be something in there. But don’t be alarmed.”

(Riiiiiight.) I smile. Nervously.

She proceeds with my CT scan.

“OK Lara. Just looking at your scan, it appears you have an air bubble stuck in your breast.”

Sure.

“Is that normal?”

“I’ve never seen it before. It must have got trapped in there after surgery. I think it’s best you get it seen to before you start radiotherapy as it could effect things.”

I get dressed and have a good feel.

Yep, there’s a large air bubble in my boob. Not dissimilar to a giant freaking piece of bubble wrap.

I book an appointment with my surgeon. My breast care nurse comes along for moral support. The three of us sit there. And giggle. Neither of them had heard of anything like this before. After sticking a syringe in it (I didn’t deflate like a balloon whizzing round the room sadly) the doc shows me what he’s drawn out. A tiny bit of red goo. Barrrfffff. But the bubble’s still there.

An ultrasound later (that doc had never seen anything like it either) I carried on my merry way with the advice “it should eventually absorb back into your body.” And sure enough, a week later, it did. Bubble tit drama over.

So, back to the radiotherapy unit. I’m lying dead still. All Saints ‘Never Ever’ is playing. Never ever as a 14 year old listening to that song did I imagine myself lying here half naked looking like Sigourney Weaver in Alien about to have my tit nuked.

Brrrrrrrrr it’s always so cold in here. They crank the air con up to keep the equipment cool. My nipples are like pistols. I almost expect the radiotherapist to halt dead and stick her hands up on entering and seeing them!

The lovely radiotherapists walk in.

“Ooo it’s cold in here,” one of them says.

“Hang on a minute. I’m half naked. At least you’re all wearing clothes! My nipples are like bottle openers!”

They all chuckle. I am quite funny.

“Ok Lara, see you in a moment.”

The radiotherapists dash out of the room – they can’t be anywhere near the machine when it’s in action. I mean who wants to be near a machine that transmits radiation and can potentially cause cancer?

Oh.

As I lie there on my back, arms stretched up over my head, nipples you could hang a coat on, I think about how at ease I’ve become with being naked in front of all the nurses and Doctors. At least this is a flattering position. It’s certainly the most pert they’re ever gonna look.

The 23 days are a jumble. It takes more than cancer to stop me from going to Glasters. Friday morning straight after rads I set off with my wellies and sequins. It was the best weekend ever, spent laughing and dancing with my wonderful friends who surrounded me with LOVE. I’ve never done Glasto sober before. Who needs alcohol and narcotics when you can have vegan sushi and a gong bath?!

On Monday, full of happiness and my yearly Glasto rebirth of life (I promise you, no narcotics) I drove straight from Worthy farm to the hospital, covered in glitter and grinning from ear to ear in time for my LAST radiotherapy session.

The perfect way to end active treatment.

This post originally appeared here.

What It’s Like To Have An MRI

what its like to have an mri

After my last CT scan, the radiologist who read the scan suggested that I have an MRI to look further into a cluster of cells that had taken residence on my liver.  This was my first go at a not entirely clean scan, post my declared cancer free date, so needless to say I was a little nervous.

My dad came with me to the hospital…because, well, Dads.  🙂  I wore my standard CT scan outfit with no metal fasteners or zippers, thinking that I could avoid the horrid hospital gown.
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…but I was wrong.  🙂  Besides the hospital gown though, the MRI was fine.  Sure, it’s loud and it’s a bit cramped but really, an MRI was a piece of cake compared to a CT scan.  I was allowed to eat and drink like normal (though your doctor may tell you otherwise) so I wasn’t super hungry and dehydrated.

Having said that, let’s talk about how small the MRI machine is for a second.  While my experience was overall a positive (or non-eventful one), if you have a problem with small spaces, please tell someone!  The staff asked if I was claustrophobic ahead of time because they offer anxiety medication if you are.  Let the staff take care of you!  I’m not going to lie…the MRI machine is a tight space.  I remember looking at the small tube that I was going to spend 30 minutes inside and asking if it was going to close in on me.  I was worried that the sides would start shrinking in on me while doing the imaging.  Having never been in an MRI machine before, I didn’t know whether the outer tube changed its shape or size!

Since imaging was needed on my liver, most of my torso was inside of the machine.  The tech played music the whole time for me and I got to choose what station I listened to.  At one point in the scan, I remember thinking about the consequences of why I was inside this MRI machine in the first place…that my cancer may be back…and I started to freak out.  Since staying still is important, I had to keep my breathing as even as possible…but tears were flowing down the sides of my face.  After a few minutes, I was able to get myself back under control and a little calmer.

So, in a nutshell:  What it’s like to have an MRI?  You’ll get a hospital gown and you will spend an extended period of time in a tight space.  If you have trouble in small spaces, please let someone know and they will help you!  Otherwise, easy peasy.

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The lump on my liver ended up being nothing much to worry about.  These scans though, and the continual realities of being a young adult cancer survivor, are challenging.  The freak out I had in the MRI machine is very similar to the anxiety bursts I have occasionally when leaving the house or otherwise trying to live.  They speak to the control that has been forcibly taken away by cancer.  The thoughts that race through your mind when you’ve been cancer free for however long and now there is a something, isn’t understood by very many people our age.

Welcome to Lacuna Loft.  Welcome to a tribe of people who understand.

Easy Peasy Applesauce

applesauce

Fall is here.  The season of pumpkin spice, cooler weather, changing leaves, and…APPLESAUCE!

With apples, a touch of water, and a dash of sugar and cinnamon we arrive at a lovely snack, breakfast, or dessert.  Easy to eat when your stomach is on the fritz and a very healthy addition to any day.

applesauce

applesauce

To check out how we made our delicious, homemade applesauce, go here.

How To Survive Your Own Apocalypse

how to survive your own apocalypse

My husband is a notoriously quirky gift-giver. For my birthday this year he bought me a weekend at a zombie apocalypse survival camp because I am a huge fan of the television series The Walking Dead.

But I can’t really call myself a die-hard fan of the show because I actually didn’t start watching it until I began treatment for cancer in 2014. During the time I was on chemo, I didn’t have energy for much else besides watching television, and I very quickly ran through episodes of my regular favorites.

At the recommendation of my friend Carmen, I started watching the show, and it made me feel alive. Watching this group of ordinary people who were suddenly thrust into a situation where they had to literally fight for their lives to survive in a new and unpredictable world where the odds were against them inspired me.

It made me hopeful to see the characters on the show continue to face despair, setbacks, and imminent death, and yet they continued to fight for their lives and the possibility of a return to a life that offered a stable future for themselves and their families.

The Walking Dead inspired me and taught me some important lessons that helped me face my own personal apocalypse…

Get ready for a fight.

When you have been diagnosed with a chronic or long-term illness, you have to prepare yourself for the fight ahead.  What you are facing, the changes you have to make in your life, the surgeries and treatments you have to endure, require mental preparation and fortitude.

Keep faith in humanity.

Sometimes when you endure a series of unfortunate events, the world starts to look like a terrible place.  But if you try, you’ll find there are always good people ready to do good deeds, and where there is life there is hope.

alive, hope, and tracks image

Look around and see what really matters.

When you feel like you’re starting to lose everything, look around yourself and count all the things you’ve got left.  Even in times of crisis and scarcity, you might surprise yourself with the abundance in your life.

Michael-Cudlitz-as-Abraham-Danai-Gurira-as-Michonne-Josh-McDermitt-as-Dr.-Eugene-Porter-and-Chandler-Riggs-as-Carl-Grimes-©-Gene-PageAMC-460x304

The disease is inside all of us.

The biggest idea I had to take on board when I was going through my treatment was my own mortality.  It’s something every human has, and we can never completely escape it.  It was very liberating to really admit this limitation.

Appreciate the moments of calm.

Learn to love the boring, uneventful parts of your day.  The restful moments when you can just concentrate on breathing.

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Allow your sword to be sharpened by your circumstances.

Michonne is my favorite character on the show.  She was just a working mom and a wife before the apocalypse.  Due to her circumstances–the tragedy after tragedy she experienced–she has become one of the strongest, most unstoppable survivors on the show.

Michonne The Walking Dead Facebook Cover Photo Picture

You survive one second, one minute, one hour, one day at a time.

When something seems unbearable, try to endure it for a second, ten seconds, half a minute, a minute…When handled in small increments, difficult tasks become easier to deal with.

Make room for the pain.

You can’t escape the past.  Acceptance of the good and the bad things that have happened in your life is a choice you make, and it can help you understand the lessons you are meant to learn.

Don’t hold back.

Don’t hide your feelings from yourself or your loved ones.  Tell them how you feel.  Speak your truth in the now because it’s the only thing that’s certain.

Rick Grimes Coma

I ended up leaving zombie apocalypse survival camp early because the sleeping accommodations were uncomfortable, and I couldn’t take another night of restless sleep.  I don’t think the people running the camp or the people attending the camp thought my behavior was very becoming of a “survivor,” but they didn’t know me or my life; how much I’ve survived already, and how much I think about surviving every day.

And when I rejoined my family, and we drove off into a clear New Jersey morning, north, towards Vermont, I knew I would always be ready for whatever was coming next.

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