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.

links via here, here, here, here, here, here, here, here, and here.

The Thing About Cancer + Treatment Is…

young adult cancer and treatment

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During the month of May, we’ll be bringing back some of your favorite posts in groups of 5!  Today, we even have a bonus, 6th post!

Today, we’ve got 6 GREAT posts focused on getting to the nitty gritty of young adult cancer and treatment.

[/spb_text_block] [spb_single_image image=”14147″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/ct-scan-tips/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”first”][/spb_single_image] [spb_single_image image=”14150″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/food-tips-for-chemo/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”last”][/spb_single_image] [spb_single_image image=”14145″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/caregiver-guilt/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”first”][/spb_single_image] [spb_single_image image=”14146″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/easy-ways-to-talk-about-poop/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”last”][/spb_single_image] [spb_single_image image=”14148″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/whenever-i-feel-anxious-i-wiggle-my-toes/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”first”][/spb_single_image] [spb_single_image image=”14144″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/cancer-survivor-tattoo-finished/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”last”][/spb_single_image]

The Thing About Cancer In Your 20s + 30s Is…

cancer in your 20s

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During the month of May, we’ll be bringing back some of your favorite posts in groups of 5!

Today, we’ve got GREAT posts focused on getting to the nitty gritty of what it is like to have cancer in your 20s and 30s.  Today we’re sharing some oldies but goodies!

[/spb_text_block] [spb_single_image image=”14018″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/cancer-in-your-20s/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”first”][/spb_single_image] [spb_single_image image=”14017″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/10-more-things-about-cancer-in-your-20s/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”last”][/spb_single_image] [spb_single_image image=”14021″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/three-years-cancer-comedy/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”first”][/spb_single_image] [spb_single_image image=”14020″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/the-process-of-surviving/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”last”][/spb_single_image] [spb_single_image image=”14019″ image_size=”full” frame=”noframe” lightbox=”yes” image_link=”https://cactuscancer.wpengine.com/donuts/” link_target=”_blank” fullwidth=”no” width=”1/2″ el_position=”first last”][/spb_single_image]

A Young Adult Cancer & Chronic Illness Writing Group!

writing group

Lacuna Loft is incredibly excited to introduce you to a new program that is starting here in mid-March called Unspoken Ink! Unspoken Ink is a creative writing group, designed to help address issues that transport us from initial diagnosis into the new normal and survivorship. The group will consist of 8-10 people, and will meet over 10 weeks for 2 hours each week over google hangout video chat.

If you’re interested in joining us, read more below and fill out the form!  Our Spring Session is forming now!

For the Spring Session of Unspoken Ink, we will be forming a group of 8-10 survivors. Caregiver groups will start slightly later in the year. If you are not able to attend the Spring Session for any reason (you’re a caregiver, the group was full already, the time didn’t work for your availability, etc.) please fill out the form anyway and we’ll put you on the list for future writing groups!


Welcome to the Unspoken Ink writing group! Jen and Mallory are so excited that you are considering joining us!

This group is designed to take you on a journey through your cancer or chronic illness diagnosis and into your survivorship with a small group of your young adult cancer/illness survivor peers. Each 10-week program consists of a weekly writing session attended via google video hangout. We will get to know one another in an intimate, 8-10 person setting and address issues that transport us from initial diagnosis into the new normal and survivorship.

The Unspoken Ink writing group uses a creative writing method (Amherst Writing and Artists (AWA) Method) wherein the facilitator provides a writing prompt and you can use that prompt in any way you’d like to create a story over a set amount of time. Once we’ve finished our writing (yes, the facilitator writes too!), everyone is given the opportunity to read their writing out loud. Hearing your own story and hearing someone else’s teaches us all so much about our experiences and our stories. Once the piece is read, we reflect on the writing – what did we like, what stood out, what do we remember. Everything is considered fiction so we do not respond to the writer as a support group may, but keep the focus on the writing.

Sometimes the prompts are about cancer/illness, sometimes indirectly related to cancer/illness, and sometimes not about cancer/illness at all. Above all, the writing program emphasizes that we are more than a diagnosis.

Our Spring writing group is forming soon!

Some logistics:
– The writing group meets for 2 hours each week, for a period of 10 weeks. A commitment to attend each week is important to group continuity and in creating a safe space. Please be on time. The group will begin in mid-March with a TBD meeting time.
– Each participant will receive a name@LacunaLoft-writinggroup.org email address to use when attending each writing group session. At this email address, you will receive a weekly invitation to a google video hangout where the writing group session will take place. These email addresses will help preserve individual privacy if desired and will make meeting as a group via video hangout easier.
– Following each weekly session, you may decide to submit your writing to Mallory (mallory@lacunaloft.org) for publication on LacunaLoft.org in their Young Adult Voices program section. This is not mandatory!

Let’s Talk About Sex Baby!

sex during cancer

Geraldine is a lovely lady. In her 60’s. Well spoken. Wise. She’s one of the Breast Care Nurses who’s called me in for a little chat and a check up.

“Now I need to ask you Lara. Do you have a partner?”

“No. (Dramatic pause) I have a Lover.”

I said this purely in the hope of shocking Geraldine and to make her gasp or at least squirm in her chair. Course I don’t have a bloody lover! Well I sort of do – but I don’t think once a month counts. Right?

Geraldine doesn’t bat an eyelid. Doesn’t even flinch a millimetre.

Damn it.

Geraldine 1. Lara 0.

“You need to have regular intercourse throughout chemotherapy to keep everything in working order and the juices flowing so to speak. I recommend you get a vibrator.”

I think I’m gonna vom. Now I’m the one squirming in my chair.

Geraldine 2. Lara 0.

I can’t think of anything more revolting. A cold, clammy, glittery dildo that stinks of rubber and has a tiny pink rabbit having an epileptic fit attached to the side. How thoroughly sexy. I rather use it to stir my custard thanks. But if you insist Geraldine. I mean so far the NHS have come up trumps. A free wig. A complementary silk Hermes scarf designed by Stella McCartney. So why not give out free quivering wangers to all cancer patients? Or even better, free sessions with hunky men who are trained sexual ‘therapists.’ Oh and on top of that, throw in a couple of Merkins, seeing as chemo makes ALL of the hair on your body fall out if you know what I mean. Thank you please.

After my heart to heart with Geraldine I text my ‘Lover.’

‘I’ve just been to see my nurse and she says I need to have LOADS of sex during chemo to keep everything in working order. THIS IS A MATTER OF LIFE AND DEATH! You would be saving my life x’

No pressure or anything.

A few minutes later I get a reply.

‘Happy to oblige! x’

Being a cancer patient sometimes does have it’s perks.

This post first appeared here.

A Young Woman’s Breast Cancer Story Told Through Film

When I was diagnosed a good friend of mine leant me her camcorder and gently encouraged me to film myself throughout my treatment. At first I thought ‘who the hell wants to watch that!’ but I soon picked the camera up and treated it like a diary. Every time I wanted to release an emotion or express a feeling I could just talk to the camera or record a voice memo on my phone. It became so cathartic. Sometimes you don’t want to talk to anyone because that person might not understand or might get too emotional or too sympathetic when all you want to do is scream, swear and cry hysterically in private.

I didn’t look back at any of the footage until a good few months after I’d finished all my treatment. I wasn’t sure what to expect and was quite nervous of it conjuring up bad memories. But in fact there were loads of great memories! Cancer can be very funny. I’m a pretty basic human being and I never tire of toilet humour!

Breast Cancer Awareness Month every October is a wonderful thing. It raises awareness and a heap of money but I couldn’t help noticing pink stuff everywhere. Beautiful celebrities wearing pink lacy underwear, pink merchandise, pink food, pink smiles. Cancer is anything but pink and fluffy. And I wanted my film to show the truth. How one day you can be feeling wonderful and glamorous in your wig and painted eyebrows but the next day you feel like death warmed up and you look like Gollum!

But I also wanted to make this film to show fellow cancer patients out there that you can get through this and you’re not alone. It’s OK to have rubbish days where you can’t get out of bed and hate the world but there are always days when you can put on your sequins and purple wig and live the hell out of life!

How have you shared your survivorship story with others?

10 Things You Can Do To Make Waiting Purposeful

I played so much Angry Birds while I was going through chemo, that now, when I see a picture of an Angry Bird, I start to feel a little green around the gills. Actually, as I write this, just thinking about Angry Birds makes me a little sick to my stomach.

Once I finished treatment and found I could no longer play my favorite time-killing app, I had to try and think of some other ways to pass the time while waiting around to be seen.  Here are some suggestions for making the most of your time.

1. Make Lists
I pull out my phone and make all sorts of lists: questions for my doctors, shopping lists, to-do lists, places I want to visit, recipes I want to try, possible birthday gifts for family members, books I want to read…I just made a list of lists I make—meta.

notes

2. Self-Talk
Please don’t do this out loud or you may find yourself leaving with a few extra medications. No, self-talk is like having an intentional, internal monologue. This is time where I sit and think positive thoughts, meditate on reassuring quotes, or try and logically talk myself through issues weighing heavily on my mind.

talking-to-yourself

3. Do Something Creative
People who can knit or sew are, in my mind, wizards. I don’t have the kind of magic in my hands to be able to do that, but I can doodle, cross stitch, or my personal favorite—plug headphones into my phone to make beats and write songs with Garage Band Studio.

knitwizard

4. Text
Having never been a phone person, this is the kind of thing I don’t normally think to do, but when I find myself with phone service and extra time in a waiting room, I try to check in with people.

funny-best-friend-texts-11

5. Clean Out Your Inbox
Being the proud user of a Hotmail email address from 1996, I get a lot of ads in my inbox I don’t normally take the time to delete.

inbox

6. Clean Out Your Photos
So…much…storage… If you regularly take photos, but don’t regularly delete them off your phone, it’s a good way to spend a few minutes. And don’t forget to delete them from the “deleted” photos album!

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7. Seated Kegels
Not just for women…

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8. Click-to-Give
That’s right you can do charity work…without spending money… There are so many click-to-give charity sites nowadays, where you click a button and some people will donate money just because you showed your support for a cause by caring enough to click.

clicktogive

9. Conduct Research
Chances are there are other people in the room where you are waiting. You can ask them questions about things you want to know more about. Even if they don’t know the answer to your question, it could be a good way to strike up a productive conversation.

talk-to-strangers

10. Take a walk
I don’t know why more waiting rooms don’t have treadmills, but if you arrive for your appointment, and there seems like there is going to be a long wait, you could ask the person at the reception desk how long they think it will be, cut that number in half and take a little walk.

Cropped view of a pair of woman's feet wearing sports trainers and walkingimages via here, here, here, here, here, and here

How do you like to spend your time waiting?  Check out our other keeping busy while waiting posts here and here!

It Should Get Easier

thyroid cancer

Eight years on, I know the drill.

After the interminable wait in the radiology department waiting room, I’m led to a small room with a narrow bed next to an ultrasound machine.

I dutifully wore a v-neck sweater so I wouldn’t have to change into a gown. After removing my necklace and earrings, I lay down on the bed, pillow positioned under my shoulders to maximize discomfort and neck accessibility. Unlike the (sometimes) happier sonogram rooms of obstetricians’ offices, this room features no screen on the wall with which to follow along – not that the angle of my head and neck would allow for screen watching anyway. I stare at a spot on the ceiling behind me.

As the ultrasound tech preps the computer, he asks the same questions as those before him:

“Have you been here for an exam before?”

“Yes.”

“Why are you having this sonogram?”

“Thyroid cancer.”

“When was your diagnosis and your thyroidectomy?”

“November 2007. January 2008.”

January 2008. January 2, 2008, to be specific. Eight years ago this month. I’ve probably had at least 25 neck ultrasounds in the time since.

This process should get easier. But it hasn’t, not yet. I don’t know that it ever will, now.

This is technically a routine test, the sonogram that I get twice a year before meeting with my endocrinologist. My last many such sonograms give me no reason to believe that this one will be anything out of the ordinary.

But as I lie on the bed, my head craned up and to the left as the warm ultrasound gel is applied and ultrasound tech slowly moves the gizmo along the chain of lymph nodes under my right ear, I can’t help but wonder what if. What if this is the time that the trend of “nothing to worry about here” changes? What if rather than the radiologist’s reading of “no measurable change” I receive a report of “more follow-up needed”?

I remember that in my haste this morning, I didn’t give my son a kiss goodbye. Why didn’t I give him a kiss goodbye? Why did I rush?

The ultrasound machine beeps as the tech clicks, registering a picture for the radiologist to assess. I never know whether to worry about the number of clicks and beeps. Do more of them mean there are more potentially suspicious lymph nodes in the pictures? Or do they simply mean that I’ve gotten an especially thorough technician?

Sonography is both an art and a science, my doctor has reminded me. What one sonographer picks up in one exam, the next may not see. Instructed to turn to the right, I stare at the clock on the wall and the minutes tick by. Have I gotten a particularly artful technician today? Or a new and inexperienced one who needs more time to determine what he’s seeing?

I can’t know the answers to those questions. And I can’t ask questions, because the technicians aren’t supposed to tell you what they’re seeing. (Sometimes they do, anyway. I’ve been on the winning and losing side of those technician diagnostics, and I’ve decided that I’d rather wait for the official radiology report.)

So I keep quiet, waiting for the beeping to stop, to be given the OK to get up, to wipe off the ultrasound gel that has now melted and oozed down my neck, to put my jewelry back on. To be told that my doctor will get the report in a day or two.

To open the door and head back into my regularly scheduled day, already in progress.

I wish this would get easier.

Go here to see what it is like having a CT scan.  Have you had a sonogram before during your cancer survivorship?