What I Bring To Chemo

So today was my 5th chemo! Only 7 more to go. I finally feel like I’m starting to get the hang of this chemo thing. It’s anywhere from 3-5 hours in the chair for me. And I always have a nice big bag packed full of goodies. And I always have some company.

Snacks. Now I like to eat. And I like to eat frequently. I definitely nibble constantly throughout the day. Lucky for me, chemo hasn’t destroyed my appetite (my surgery actually lessened it). I always make sure to have a water bottle, a coconut water, and various snacks. Included in my rotation are honey roasted almonds, vegan lemon fig bars, chocolate almond energy bar, rice cakes, veggie chips, and cherries. (Yes I’m vegan, so any food related suggestions will be based on what I eat, but I promise you, I get all my needed nutrients).

Reading material. Sometimes I’m in the middle of a great book I can’t put down, and sometimes I’m flaky and indecisive on what I feel like reading. Therefore I always have a book, a magazine or two (Rolling Stone, Vanity Fair, US Weekly, and Bust are my favorites), and my laptop in case I feel like looking on in some news, Buzzfeed, Twitter, Think Progress, or Pinterest.

An extra blanket. Yes I know that the hospital provides me with a warmed blanket once I arrive, but the blanket doesn’t stay warm, and is a really thin, not very soft blanket. Therefore I bring my super soft, fuzzy, leopard print blanket. I bring one that is my style to make the place a little more mine.

Games. UNO & other card games tend to work best at my center, although I wish I could bring Bananagrams. They make it fun & keep me alert.

Mementos. I have received some meaningful mementos from various people during my cancer journey. I received a hand knitted shawl from a woman in her 70s who is a breast cancer survivor at a support group I went to. I received a medallion with one of my favorite quotes from a woman I met through the online support boards on the Young Survival Coalition website. I wear the birthstone owl necklace my boyfriend gave me for our one year anniversary (this past May 28th!), which he bought for me because he wanted me to have something pretty to wear while he knows I’m feeling constantly down about my looks (chemo induced hair loss, acne, & bloating really takes a toll on your psyche). Having these things with me make me feel powerful, loved, and supported.

While I sit there and poison runs through my veins – poison that the nurses have to wear scrubs to administer to me – having things that matter and keep me happy and distracted is important. Now everyone’s list may be different, but the key is to find things that make you comfortable. For me, the last thing I want is to be stuck in the chemo chair hungry and cold. I have hunger induced grumpiness and cold induced grumpiness, and there’s no need to make chemo harder than it already is (both for me and for my chemo buddies). Now I feel silly because the large dose of Benadryl they give me just makes me pass out quickly, but just in case, I am prepared to make chemo a mini relaxation day.

So my advice is to make it YOU! Have fun with it and be prepared. Know what works for you. And try to make it fun. If you’re going to be stuck in a chair with an IV full of poison be injected into your body, try to enjoy your time there and look at it as a mini get away!

Take A Break In A Chair!

We have started a new series here on Lacuna Loft called Take A Break!  Once a week or so we’ll post a different Take A Break article with a new twist.  This week, enjoy some tips on how to...

Take A Break In A Chair… (maybe a chemo chair? entertain yourself at chemo!)

[list type=”like”]
[list_item]Create a cozy space.[/list_item]
I love having a lap board and a small throw blanket when I’m stuck in a chair for a few hours at a time.  Maybe even a cozy scarf or slipper socks!  (We have a whole cozy kit in fact!)

[list_item]Bring a friend.[/list_item]
Nothing helps pass the time in a stressful environment more than having a friend with you.  Can’t have someone there every second?  Try bringing along a plush buddy to keep you company!  (At chemo, I usually had a slew of plush friends with me.)

[list_item]Play a game.[/list_item]
There are a number of awesome games that are easy to carry with you and that don’t take up too much space.  Have you tried Bananagrams or Pass the Pigs?

[list_item]Enjoy![/list_item]
You’re ready to enjoy your time…in a chair!
[/list]

P.S.  Take a break outside.

*while some links are affiliate, all ideas and opinions are those of the author

My Go To Chemo Food: Eggs!

I mentioned once before that there were two main foods that I ate while going through cancer chemo treatments….ice cream and eggs.  Don’t get me wrong, I ate other things too.  If I wasn’t feeling well though….ice cream and eggs it was! (not together though!)  Throw in a bottle of gatorade and I was a happy camper 🙂

A friend just sent me over a link of a company that is making a contraption that scrambles your egg while still in the shell…totally wild.  While I cannot endorse the product, I think it is really fun and weird 🙂

What is your go to food when you aren’t feeling your best?  Do you have a chemo food?

 

Stay Comfortable And Warm During Treatments And Tests

I have previously talked about how to dress warmly for a regular day.  A day at or in the hospital imposes additional requirements, however.  Depending on what tests or treatments are being done, you may:

  • need to ensure easy access to certain blood vessels or to catheters
  • have restrictions on wearing metals
  • need to dress and undress repeatedly
  • need to leave certain body parts completely uncovered (or even covered in ice packs)
  • have to stay in one position for a long period of time
  • have especially sensitive skin

So layering fleece tights, long underwear, a wool sweater, and a down jacket may not be feasible.  Instead, try the following.  Wear loose, comfortable layers which can easily be taken on and off, with sleeves and pant legs that can be pushed up.  Avoid anything binding or with seams that will cause irritation if you put pressure on them for a long time. Consider athletic clothing, lounge wear, or yoga clothes  – they are designed for comfort, and finding options without metal fasteners is easy.

Several companies manufacture sweatshirts and sweatpants with zippers installed specifically to allow access to lines or ports.  Searching for “chemotherapy clothing” or “dialysis clothing” online will bring up options.  If you prefer non-specialty clothing, tearaway or breakaway pants can be unsnapped to allow access to femoral lines, while button-down and v-neck shirts work well for central and PICC lines.  If you may need to bare your arms, layer a sleeveless or short-sleeved shirt under a looser long-sleeved top like Mallory does for her CT scans, so you don’t have to take clothes off to have your blood pressure taken or an IV put in.

For women, a pullover sports bra or shelf bra will eliminate metal and be comfortable even if you have to spend a long time in one position.

Finally, don’t forget the little things, particularly if they can easily be put on or taken off to fine-tune your comfort level.  There is an enormous difference between a cheap, thin pair of socks and a warm one.  Leg-warmers can be layered underneath pants for extra cosiness, while scarves (like LL’s infinity scarves, which won’t slip off or trail on the ground), hats, shawls, and even slippers can add the bit of warmth that takes you from chilly to comfy.

Managing Cancer-Related Fatigue

 In my previous post, I talked about some common contributors to cancer-related fatigue (CRF), a prevalent symptom among those with cancer and those undergoing cancer treatments. Somewhat paradoxically, studies support moderate exercise to help manage cancer-related fatigue. Upon closer inspection, this makes sense. The negative physiological processes associated with cancer and cancer-treatments, as well as general deconditioning caused by decreased physical activity from not feeling well, lead to a person having less ability to perform physical tasks that once may have been simple. So it makes sense that moderate exercise can help you feel a little better and make everyday tasks less taxing.

Here are some guidelines when figuring out what moderate exercise is best for you:

  1. Make it something you enjoy (duh). Now is not the time to punish yourself with an activity that doesn’t speak to you or to push yourself to your limits by training for that marathon you’ve always felt like you should do.
  2. Listen to your body and be kind to yourself. If you are an athlete, this may be especially hard. But this is not a “no pain, no gain” situation. If you love running, go ahead and try it, but don’t beat yourself up if your usual 7-minute per mile pace becomes a gentle jog interspersed with walking. Furthermore, a ten minute gentle walk is a great achievement…an hour long sweat-fest that makes you feel utterly exhausted afterwards is not what we’re after.
  3. Pace yourself. And I’m not just talking about with exercise. Be mindful of pacing yourself with your normal, daily activities. Rather than planning on getting ready in the morning, then running errands, then meeting up with a friend for coffee, give yourself time between activities to recuperate. And try planning your most strenuous activities early in the day, when you’re likely to be more rested.

I know this mostly sounds like common sense, but I think that when you’re not really feeling well, it’s easy to be hard on yourself.  Sometimes you need to hear from someone else to take it easy. I am more than happy to answer more specific questions about exercise and activity. Please ask away in the comments section!

image via

A Walk Through The Day Of A CT Scan

If you are going/will go through chemotherapy/radiation treatments, chances are that you have had or will soon have a CT scan.  I calculated the other day, that with my clinical trial requirements plus all of the staging scans that were done, I will have had about 12 scans (CT and PET depending on when it was) by the time I’m all finished!  I just had a round of scans last week and they turned out clean 🙂  I am almost 3 years now past my last chemo treatment.  I have learned some tricks along the way so I’ll highlight those throughout my CT scan story 🙂

Since my husband, Brett, and I come to the hospital from out of town, he and I always drive down to St. Louis the night before and then take the first CT scan appointment of the day.  This means a 6:15 am departure from my childhood home…or 6:20 am if we are leaving late 😉  It is important to us to be on time.  This can definitely reduce some of the stress involved with heading to the hospital for a scan to look for cancer…an event that is kind of emotionally heavy regardless of the outcome.

scan_2

When we drive to the hospital, we park in the garage that is adjacent to the building where my CT scans, labs (when they draw blood to check things), and my doctor’s appointment all are.  We always bring a bottle of water with us…my husband and I tend to do this anyway, but it is really important to rehydrate after the scan so I like having a bottle of water on hand.

scan_4

scan_5

In all of these pictures, Brett and I both look a little tired.  🙂  We aren’t used to getting up before 6 am and we had just returned from an all night drive home from Boston the day before heading down to St. Louis  🙂  Busy couple of days!

scan_7

When we get to the CT waiting room, the women there know me by name.  They always exclaim “Good morning Ms. Casperson!” as we walk in 🙂  I always fill out the same forms…I did this even when I was getting scanned ever 3 months and when I was receiving chemo every 2 weeks…I could complain about that and other hospital idiosyncrasies for hours 😉

scan_4edit

scan_9

Then they call me into the back where they start an IV.  When I was still doing chemo, this process was a lot easier because I had a port they could easily access in my chest.  It meant that they didn’t have to find a good vein in my dehydrated body’s arm (I have to fast starting at midnight the day before the scan) but used the port that was connected straight to an artery in my neck.  I used to always be given a special liquid to drink at this stage too.  It tasted super funny and my GI system didn’t like it all that much…  Now though, I don’t have to drink it!  Win win!

scan_10

scan_11

After the IV is placed, I’m sent back to where the CT rooms are and I typically wait a few more minutes. (there is a lot of waiting)

scan_12

scan_13

This is what the CT machines look like.  When I walk into the room they always verify who I am by making me say my full name and birthday.  They also always ask me if I have had a CT scan before…I have to keep from laughing with this question…uhhh yes, I’ve had a ton.  I’m basically a pro 🙂

I lay down on the table and it raises and retracts into the doughnut shaped part of the machine.  They scan my neck, chest, abdomen, and pelvic area.  While you are allowed to have some metal on you (unlike an MRI), I can’t have it in areas where I am directly scanned.  I have learned to dress appropriately so that I don’t have to change into some awful hospital paper outfit or raise/lower a piece of clothing for the scan.  I typically wear comfy/kind of fashionable pajama pants, a cami with built in “bra”, a stretchy top, and some sort of sweater that will keep me warm in the chilly hospital and has no metal (no zipper for instance) but that I can also roll up the sleeves.  On the arm where the IV is started, I need to roll up that sleeve without removing my sweater all the way…plus, having some fabric (like a rolled up sweater sleeve) under the tourniquet they use to start the IV, makes that process a bit more comfortable.

scan_14

The scans last about 15 minutes.  The technician gets me set on the table for the lower three scans, gets me hooked up to a machine that injects the tracer, and those scans happen.  Then the technician comes over and gets me set up for the neck scan, and the rest repeats.  🙂  After the scans, I can eat breakfast and have some coffee!!!  Since I didn’t have that extra liquid to drink this time, I was sooo thirsty by the time I found Brett in the waiting room of the CT radiation area.  I used to bring a snack with me but now there is a cafeteria in the building where I go for my scans, plus there is a cute little cart that sells coffee and pastries…and I am a sucker for sweets 🙂

scan_16

scan_22

scan_23

Next, we head to the labs area.  Here, they draw the blood needed to take all of the measurements they need to see if I’m healthy and monitor everything they do for the clinical trial.

scan_24

This labs area is connected to the rooms where I had chemotherapy treatments a few years ago.

scan_25

Then we head to the doctor’s waiting room!  I check in, pay a co-pay, and wait a little more.

scan_26

scan_17

scan_18

scan_19

Then we meet with the doctor.  I really love my doctor and her team.  I think that choosing someone to handle your treatment that you are comfortable with is a HUGELY important thing 🙂  When I was going through treatments I think I called my doctor’s nurse at least once a week with some sort of question, concern, weird emotion…liking these people and having faith and trust in them is so important!

Outside of the doctors’ offices and the labs area, there is a bell.  Patients ring it whenever they want.  It signifies good news and everyone claps and cheers whenever the bell is rung.  It makes me teary eyed just thinking of all of the rings I have heard while in the cancer area…whether in labs, treatment, or seeing the doctor.

scan_20

scan_21

And that’s it!  That is a CT scan morning for me 🙂  Below are my tips and takeaways that I have found helpful over the past few years…

[list type=”like”]
[list_item]be on time to reduce stress.[/list_item]
[list_item]it is really important to rehydrate after the scan so I like having a bottle of water on hand.[/list_item]
[list_item]dress appropriately so that I don’t have to change into some awful hospital paper outfit.[/list_item]
[list_item]wear some sort of sweater that will keep me warm in the chilly hospital and has no metal (no zipper for instance) but that I can also roll up the sleeves.[/list_item]
[list_item]having some fabric (like a rolled up sweater sleeve) under the tourniquet they use to start the IV, makes that process a bit more comfortable.[/list_item]
[list_item]choose someone to handle your treatment that you are comfortable with.[/list_item]
[/list]

Do you have any others that I have missed or forgotten?  I’d love to add them to the list!

Waiting

With a cancer diagnosis, you get bombarded with a ton of information. Disease info, hospital info, oncologist info, treatment plan info, clinical study info, drug side effect info, etc. One of the things they don’t really spell out in all that info is how at least half of the treatment plan is waiting. Waiting for your appointment, waiting for the doc to come in, waiting for blood counts to see if chemo can start, waiting for the chemo to arrive, waiting for your blood to be typed, waiting for the blood transfusion to arrive, waiting for test results, waiting to see if the drugs are working… waiting for answers.

In the midst of all that waiting leaves a lot of time. Finding things to do with that time is very important for me, because if I’m not staying occupied, my mind can wander to some fearful places. I’ve learned over the past 2 years to never expect to just be “in and out” when it comes to a clinic visit or a chemo appointment. Something always seems to come up that has us waiting, so we show up prepared. Bastian brings his iPad, or his Kindle, or a movie to watch. I bring my laptop and catch up on work, or read on my Kindle. I keep a suitcase packed in my trunk with clothes for the both of us, just in case a short clinic trip ends up becoming an overnight stay in the hospital for one reason or another.

Because I know I’m going to be waiting a lot, there are things that I always make sure we have when heading to the hospital. Besides clothes, below is my personal checklist:

  • Phones, Kindles, Ipad, Laptop
  • Chargers for all of the above
  • Cash/change for the vending machines or cafeteria
  • Paper and pen/pencil
  • Dry erase markers – to decorate Bastian’s windows should the need arise
  • Chewing gum/candy
  • Bastian’s next 2 med doses (even if I’m sure we’ll be home in time)

With Bastian being a juvenile patient, most hospitals have some kind of Child Life program with volunteers who come by to see if he needs anything, or wants to participate in arts and crafts, music, or various other activities. However, a lot of the time, he feels crummy and just doesn’t want to be bothered with anyone else, especially when the docs and nurses are in and out all the time. So, we come prepared to entertain ourselves the best we can, while we wait.

Dressing To Stay Warm

As a human I am ostensibly warm-blooded, but I sometimes have my doubts.  I feel cold most of the time, and this is amplified when I have a migraine,  so I have become an expert at dressing to fight the cold.  Here are some tips on dressing to stay warm, in case your illness,  your treatment, your hair loss, or your life in the Yukon are making you cold.  Note: Because of additional restrictions, such as keeping ports accessible, we will cover dressing warmly for chemotherapy sessions in a later post.

Air – as long as it isn’t moving – is an excellent insulator (this is what lies behind the incredibly cool Leidenfrost effect).  This is how hair and fur mainly work: they trap air and keep an insulating layer next to the skin.  Much of the heat generated by the body is retained by the cushion of still air held against the body.  If you are looking to dress to stay warm, you should use materials and techniques that mimic this – that means dressing in layers, using fabrics that trap air, and covering up as much skin as possible.  My go-to fabrics are wool, silk, flannel, down, and synthetics designed for warmth, like polar fleece.

  • Wool can irritate sensitive skin, so I either use it as an outer layer, or stick to products from companies like SmartWool, which treat their wool to reduce itchiness (and to make it machine-washable).   Wool is especially well-suited for socks, hats, sweaters, and coats.
  • Silk is almost guaranteed not to irritate your skin, and it is breathable, so it’s a great base layer.  I like long silk underwear under my regular clothes, silk sock liners, and silk/wool-blend sweaters.
  • Flannel is extremely cosy.  At night I double up – I wear flannel pajamas and use flannel sheets on my bed.  I can’t get away with this during the day, so instead I buy flannel shirts, and flannel-lined pants and jackets.
  • Down might be my favorite material for warmth; I love my down winter coat and my comforter.  If you’re at home, I strongly recommend a down robe.  If you need to be out, a down vest will keep you toasty while still counting as normal clothes.
  • Fleece is lightweight and thin, so I like it for layers and linings – fleece-lined wool hats or a fleece jacket under my down coat.  The downside is that it isn’t very breathable, so sweating can become an issue.

Dressing in layers and covering up as much as you can will help trap even more air, and will also let you adjust your warmth level as you need to.  You probably can’t get away with wearing a balaclava to class, or wearing ski gloves in the office, but you should be able to pull off a scarf or turtleneck, a snug cap, and fingerless gloves or wrist-warmers.

Hiking and sporting goods stores are great sources for warm clothing, and a key phrase to look for is “performance apparel”.  If an undershirt is designed to keep you warm while camping in Minnesota in February, it will probably help to keep you comfortable when chemo or a migraine steals all your body heat.

image via

Check Out Our Pre-Launch Content!

While our blog here at Lacuna Loft is definitely still in its growing phases, there were a handful of posts that went live before our official launch.  We thought, on this lovely Thursday, we would point you back to those posts that you might have missed!

[list type=”like”]
[list_item]a really cool DIY project decorating mugs (you could do plates or vases too!)[/list_item]
[list_item]a post about buzz cuts and hair loss[/list_item]
[list_item]starting to learn the process of surviving[/list_item]
[list_item]some tips on how not to say the wrong thing to a young adult in crisis[/list_item]
[list_item]free, printable puzzles to take anywhere[/list_item]
[/list]

Happy Thursday!

Food Tips For Chemo – Eat What Tastes Good!

Early last year, 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.  🙂