Not All Food is Tasteless

Sushi with Sprite and lots of wasabi was my favorite thing during chemo.

QUESTION: All of my tastes in foods seem to have changed. My favorite dishes now aren’t that great and I seem to be gravitating towards things that are more spicy. Did that happen to you? Is it permanent? – TASTELESS

 

Dear Tasteless,

Yes, my tastes changed during chemo. The good news is that they changed again after chemo. I don’t want to say they went back to the way they were originally, but it’s much closer. And the subsequent adjustments may have been more from growing up and less from chemo. It’s unclear.

However, when I was on chemo, I stopped being unable to taste things unless they hit me in the face. It took me a while to notice because I was a white-bread-is-delicious kind of gal, but eventually everything seemed to taste, well…. bland. So I added some spice. And some sauce. And then more spicy. Eventually I was eating sushi with straight wasabi.

That was my favorite lunch actually. I had never really eaten much sushi before, but after every round of chemo, I would get back to campus and eat one of those pre-made sushi things from the campus center convenience store with an excessive amount of wasabi, soy sauce, and a sprite. It was the best. Plus, I taught myself how to use chopsticks!

The important thing during chemo is that you DO EAT. Your body really needs all the nutrients and energy that it can get. If the things that tasted good before aren’t quite as good now, that’s okay. Find something that you like, something you can taste, something that is delicious. And eat that. A lot of that. You can worry about whether eating potatoes with cheese and bacon all the time is good for you later. If that’s what it takes to get you through this, then that’s what it takes. As I’ve said before. it’s your body and you can often feel how best to take care of it.

What kinds of foods did you like during chemo? How did your tastes change?

Have a question of your own? Ask Chemo between Classes through the Question Submission Form or by emailing chemobetweenclasses@gmail.com . You can get new posts by subscribing via email in the lower right hand corner, liking me on Facebook, or following me on Twitter!

 

PS – As I was looking for pictures for this post, I came across all of this #foodporn and I couldn’t resist. You’re welcome. 🙂

 

Sprinkles (not jimmies, sorry 😉 )

A lot of cheeses have a very strong flavor….

Ice Cream Sundaes are always delicious

Fruit tarts are the thing that I miss most about living in Europe. Though my favorite was raspberry.

Powdered sugar was always a thick coating on my French Toast growing up.

Even fresh food can have a strong taste to it if you use onions and capers

Smoked Salmon is all about the texture and the toppings

French fries, hot and fresh, with lots of salt…. never gets old.

Spice up your pizza with lots of toppings

Macroons are delicious, but their flavor is very subtle.

Blue cheese has a very strong taste that could probably cut through the fog of chemo

The combo of milk and cookies is the best.

 

 

This one time….

QUESTION: I’m done with treatment and can start to move on with my life. What was the weirdest thing for you once your treatment was finished? – OVER AND DONE

 

Dear Over & Done,

Starting now (or soon anyway), you’ll be faced with the following dilemma: You’ll want to tell some story that starts with “this one time, I had cancer and….”, but you’ll be talking with someone who doesn’t know you were sick. So, you’ll need to tell them. It’s very awkward because you can never tell how someone is going to react. A lot of people will react with sadness/pity, which is annoying, a lot of people will not react at all, which is surprising. You’ll need to come up with some method of handling all the various reactions.

Also, if you make a new friend, when do you tell them? What about a new boyfriend, how long do you wait to tell him? The answers will vary according to the people and the circumstances of course, but it is something that a lot of people don’t consider.

Personally, I tend to wait a while before telling people about the cancer, until it becomes relevant to the conversations. For example, I went to France to study abroad 6 months after finishing chemo. I had a cute buzz cut and didn’t mention cancer to anybody. Eventually, I told my 3 best friends in the program, but only after we had been there for 2.5 months and I knew them really well. At that point, I WANTED to tell them, because I wanted to share these stories with them.

As another example, there are people I have been Facebook friends with for YEARS who didn’t know I had cancer until I started this blog. It’s all a matter of timing, relevance, and how comfortable you are with sharing.

 

Have you had to explain your cancer to anyone? How did you go about it?

 

Have a question of your own? Ask Chemo between Classes through the Chemo between Classes Question submission form or by emailing chemobetweenclasses@gmail.com . You can get new posts by subscribing via email in the lower right hand corner, Chemo between Classes on Facebook, or following me on Twitter!

They Want to Suck Your Blood

Chemo vampires don’t look like this.

QUESTION: Did you have to have blood taken in between treatments? I’m supposed to have a visiting nurse come and take blood twice a week which is really annoying. – DON’T LIKE VAMPIRES

 

Dear Vampires,

I did have to get my blood taken fairly often. I’m not sure the exact schedule, but 2x/week sounds right. Since I was in school an hour away from my hospital, I went to a local lab and they did it there. It is irritating, but in the grand scheme of things, not a big deal.

Did they give you a port-a-cath? Little round thing under your skin near your heart that they can stick needles in to? I got one and it was the best thing ever. Hurt so much less and was much less inconvenient than getting stuck in the arm all the time. They took it out after I was done with chemo, which was the right idea, but I still wish I had it every time I have to get blood drawn.

Of course, the reason that you keep needing to get your blood tested is to determine if you need a blood transfusion or not. In terms of keeping you healthy, giving you extra blood or platelets is really quite a simple treatment. BUT the thing to remember is that there are still risks. It’s very possible to have an allergic reaction to the blood that you’re receiving or to get a blood-transported disease (despite the rigorous screening of donations). For this reason, my parents wanted me to have as few blood transfusions as possible.

Fun story: One time my counts were too low and I went in to get a transfusion. I started getting hives (allergic reaction), so my nurse immediately whisked away the current pouch of blood and replaced it with an IV of Benadryl to counteract the allergies. I was sitting in the IV chair and my mom and my nurse were sitting on the other side of the room chatting. Then, as the Benadryl kicked in, I started falling THROUGH my chair. I felt as if I was on one of those Tower of Terror vertical drop rides where you drop straight down and your stomach is in your throat. Logically, I knew that I was fine, but it was TERRIFYING. I couldn’t speak, so I couldn’t ask my mom to hold me up. My fingers wouldn’t move, so I couldn’t grip the chair tighter. Very scary.

Thankfully it passed once the Benadryl dissipated and everything was fine by the time I left. Still. Being high on Benadryl….. not recommended.

How do you deal with the multitude of blood tests? Have you had any reactions to a blood transfusion?

Have a question of your own? Ask Chemo between Classes through the Question Submission Form or by emailing chemobetweenclasses@gmail.com . You can get new posts by subscribing via email in the lower right hand corner, Chemo between Classes on Facebook, or following me on Twitter!

Chemo makes you sick

QUESTION: Did you feel sick all the time during chemo? – NAUSEOUS NANCY

 

Dear Nauseous Nancy,

Yes and No When I was physically in the hospital being pumped full of drugs (like y’do), I was low-level nauseous the entire time.  But for the 3 weeks between treatments I was fine for the most part. It was really only during the hospital stays that nausea was a problem for me.

However, one time, during one of my final chemo round, they hooked me up to an IV and EVEN BEFORE THEY GAVE ME DRUGS I was throwing up in the trash can in the lounge. Which totally didn’t make ANY sense, because the only thing that I had been hooked up to was saline in order to get pre-hydrated. Well. It turns out that normal standard bags of saline contain 0.5% sugar. And that much concentrated sugar  at that moment was more than my body could handle. So, I made the nurses switch out my saline bag for one that didn’t contain sugar. They exist. But I had to argue with them every single time I got a new bag of saline, for that visit and for the rest of my visits, in order to make sure it didn’t have the added sugar. They all thought I was crazy, but whatever. That was the only possible explanation and I never threw up again (due to saline), so I’m pretty sure I was right.

Overall moral of the story is, they may be professionals, but it’s YOUR body. If you know something is wrong or it needs to be done a certain way, make sure it is. They can’t do anything unless you let them. You’re the one that has to do this time after time. You’ll be an expert by the end.

How did chemo make you feel? Where there any things you had to argue with care providers about during treatment?

Have a question of your own? Ask Chemo between Classes through the Question Submission Form or by emailing chemobetweenclasses@gmail.com . You can get new posts by subscribing via email in the lower right hand corner, Chemo between Classes on Facebook, or following me on Twitter!

Pediatric Wards are Better

QUESTION: I was supposed to start college this fall, but I have to defer a year for treatment. I read your bio and I thought it was really interesting that we both have tumors that are usually in much younger kids. – NOT A KID

 

Dear Not a Kid,

In my opinion, it is WAY BETTER to have a pediatric cancer. This way, you get treated in the pediatric ward (I hope this is true for your hospital) and pediatric wards are way more fun than adult wards. They’re colorful, they have tons of stuff to do for the kids, all the nurses are super nice because they’re used to dealing with 5 year olds.

The waiting room for my pediatric oncologist’s office was awesome. It had tons of movies (animated and live action kids movies), plug coloring things, legos, stuffed animals, sometimes there was a lady doing crafts, etc, etc. It was really way more entertaining than and other doctor’s office I have ever been to, which just has old copies of People magazine from 5 years ago. Even if I didn’t have the inclination or energy to actually play with any of the things, it was a much more welcoming atmosphere. And once you were back tucked away into one of the exam rooms, who knew how long you were going to be there? Or on a day when you had to hang out in the office to get some kind of transfusion, it was so nice to have kids movies going on around you. What do they even DO in the adult offices? Reruns of soap operas and ….. that’s it? Pretty boring if you ask me.

The pediatric ward was also much more entertaining when I had to stay overnight. They had a toy room with playdough. They had a patio with that squishy playground stuff on the floor. They had a specially-devoted-to-teens office at the end of the hall that had movies and things that were more for me than the 5 year olds. Santa came around at Christmas and gave out presents to all of the kids (me included!). Since, at 19, I was way older than any of their other patients, the staff pretty much let me do what I wanted, but were always smiling and trying to make sure I was being taken care of.

I stayed in the normal, adult chemo ward for my first round and it was extremely depressing. Everything was that standard hospital grey-blue. Everyone in the ward was like 85 years old. I couldn’t leave my room because it was less closed off from the rest of the hospital. The staff was perfectly polite, but they really only interacted with me when it was time for my next dose of drugs. I was very happy when I got switched to the pediatric ward for my next round of chemo.

What do you think? Pediatric Cancer Wards vs Standard Adult Cancer Wards, which do you like better and why?

 

Have a question of your own? Ask Chemo between Classes through the Question Submission Form or by emailing chemobetweenclasses@gmail.com . You can get new posts by subscribing via email in the lower right hand corner, Chemo between Classes on Facebook, or following me on Twitter!