Hi, I'm Caroline!

 

I'm sorry you find yourself under circumstances that bring you to this site, but I hope you'll find information here that will ease your journey.  Unfortunately, I have experienced chemo first-hand and have seen what family members and friends have gone through in caring for me.  (For those friends and caretakers who are reading this, thank you.  Dealing with cancer and chemo is overwhelming, and we, the patients, could not survive it without you.)

 

If your experiences have been at all like mine, you've had countless medical questions answered with, "it all depends on the person."  Unfortunately, I can't give any better answer than that, but I can offer up my own experiences.  If nothing else, I hope you'll get an idea of where I'm coming from in my suggestions of how to deal with chemo.

What inspired this project?

 

I have always loved to bake - I rolled out my first pie crust when I was nine and never looked back.  When I began having digestive issues in high school, food took on a new significance.  For six weeks while on a strict liquid diet of Modulen, a complete nutrition beverage which tastes even worse than Ensure or Boost, I started helping my mom more in the kitchen just so I could be around food and enjoy working with it as a medium even if I couldn't enjoy eating it.  After the limitations of a college dorm, cooking for myself as I entered the workforce reignited my interest in working with food and flavors.  Then, in quick succession, I recieved a copy of the book Taste: Surprising Stories and Science about Why Food Tastes Good by Barb Stuckey, was diagnosed with cancer, had surgery to remove my colon, and began chemotherapy.  With the science and theories of Stuckey's book still fresh in my mind, I went into chemo with the intention of seeing if the theories applied even under extreme circumstances.  I believe that that knowledge did help me find foods that tasted good, and am certain that having some knowledge of the science of taste let me feel a bit more in control of a situation that was frighteningly out of my control.  Now, on the far side of chemo, I think that the combination of theory and experience of applying that theory puts me in a unique position to help others find that same bit of stability and control.

What side effects did you experience?

 

I'll breeze through the less interesting side effects before getting to the tasty bits: I experienced fatigue, numbness and tingling in my hands and feet; cold sensitivity including hand, arm, and leg cramps; nausea; dry mouth; and hair thinning.  Diarrhea and constipation, two of the most infamous side effects of chemo, played a less significant role in my experiences due to the way my guts had been reconfigured during surgery.  The lack of a colon allowed me to sidestep the constipation issue, while while having an ostomy and bag gave me greater control over the issue of diarrhea.

 

Since my treatments were on two-week cycles, I had time to recover to a near-normal condition as the effects wore off over the second week of the cycle.  This proved to be a blessing.. and a curse.  On the one hand, it was a relief to be able to continue with some of my regular activities toward the end of each cycle, when I was feeling almost normal; on the other hand, it was agonizing to be reaching that peak and looking down into the next treatment, knowing what it would bring.  The longer cycles also helped me maintain my weight over the six months.  Although I always lost a few pounds in the first week while my appetite was shot, I could count on regaining it during the second week and so not have to force myself when the idea of eating was just too much.

 

One of the hardest side effects to cope with was cold sensitivity, as this prevented me from making use of the common chemo recommendations to consume cold beverages and enjoy treats like ice cream, which were supposed to be less offensive while under the influence of chemo.  The cold sensitivity manifested primarily as a strange feeling in the back of my mouth and throat when I swallowed, an unsettling granular texture and clenching feeling.  While that distressing sensation was the main deterrent, I also found that cold foods and drinks would cause painful tingling and numbness in my mouth and lips.  Just skipping ice cream would have been doable, but unfortunately the temperature sensitivity extended even to regular refrigerator temperatures, so things like milk, yogurt, and chilled juices were also off limits until the effects wore off after each treatment.  Perhaps halfway through the course, for the first 12-24 hours after being disconnected I couldn't even tolerate room-temperature drinks, but had to make sure things were at least lukewarm.  

 

Although I didn't encounter the metallic taste that many chemo patients complain of, my sense of taste was subject to an ever-varying array of afflictions.  For several days after each treatment, I found that I could not drink plain water due to the strange taste it acquired; this taste was usually accompanied by a thick white coating on my tongue, which I could sometimes peel off in gooey stringers.  My ability to taste salt fluctuated erratically over the course of chemo, and was almost always noticeably lower than normal.  I also went through unpredictable phases in which one food or another simply held no appeal at all - for a span of about two weeks, for example, even the thought of putting chocolate in my mouth was repugnant.  I frequently struggled with sensitivity to tactile flavors: the burning of acidic substances like citrus, and the spiciness of things like ginger and cinnamon.  Interestingly, the cooling sensation of mint was never bothersome.

 

As I'm sure you've heard - probably ad nauseam - side effects vary greatly from person to person and yours will very likely be completely different from mine.  Nonetheless, there may be some overlap, or you may find that some of the tricks I used work well for you for different reasons.  Keep reading to find some of the techniques that worked for me as well as some general suggestions that you might try.

How did you cope with those side effects?

 

My six months of attempts at dealing with chemo tongue brought me to this set of top recommendations:

• If you're hungry and if something sounds good, EAT IT.  Even if something sounds strange to a "normal" tongue, give it a try; one day I decided that nothing sounded so good as cottage cheese and soy sauce.  I got some funny looks, but it hit the spot.  

• Don't worry about repeating meals.  If something sounds good, EAT IT.  One week I had the exact same thing for lunch every single day: a ham and cheese sandwich with mayonaise and a cup of V8 vegetable juice.  My tongue was over the moon every time.  In the weeks to follow, I still enjoyed both the sandwich and the drink, but never with the same relish and repetitive devotion.

• Keep a snack readily available for when you wake up in the middle of the night.  My preferred munchie was Oreos.

• If you have the energy, hit the grocery store on the way home from a treatment session.  In addition to getting some circulation going after sitting all through treatment, I found that "window-shopping" through the aisles was one of the best ways to figure out what I was going to sound and taste appealing over the next several days.

• Citrus-flavored hard candies often did a good job of cutting through strange tastes in my mouth.  Be careful with really sour ones, though, as they may be more irritating.  Even the tartness of the regular candies is enough to help get saliva flowing and ease a dry mouth.

• Sauces and spreads are a great way to help get sandwiches down even if your mouth is a bit dry.  My favorites were ketchup, margarine, and mayonaise.  I've never been a huge fan of mayonaise, but the combination of a bit of fat, a hint of sourness, and a cutting flavor made it extremely useful.

• I used regular gargling with salt and baking soda in water to help avoid getting mouth sores (and indeed, I developed only one or two over the full six months).  I found this gargling solution also served to let me know how well I was able to taste salt on any given day, depending on how salty the solution tasted.  On days with poor salt reception, I knew to expect that salty things like crackers and chips would taste funny, and to hold off on those foods until my ability to taste salt returned.

• Foods that were high in umami flavor (see the Science of Taste page for more details) were almost universally appealing and helped bring out salty flavors.  The ham and cheese sandwich with V8, for example, is full of foods that rank high in umami.  Soy sauce also provides an umami component.

• Though I won't tout them on an overall nutritional basis, some of my staples and favorites at least provided calories and - my greatest personal challenge - protein: fish sticks, hot dogs, KFC potato wedges, cheese, hard candies, rice crispy treats, anything with soy sauce or ketchup.  And, my lifesaver on days when water was unbearable: single-serving instant drink mixes, particularly instant peach iced tea.