Some Things Are Just Hard To Explain

I read a book recently about how difficult it is for people who are close to a cancer patient to fully understand what they are experiencing. I believe this to be true because until my Dad had Cancer and now me, I really had little grasp of chemo, other than the fact that I hoped I would never have to experience it. Someone asked me the other day if chemo is like getting a shot and I realized that others are no different than I was. They just have no grasp of what chemo actually is or how it affects you. Since tomorrow is a chemo day again, I thought I would see if I could find any clear descriptions of chemo and some of its effects that I could share with you.

First of all, chemo is not like getting a shot. Not in my case anyway. Actually, there are many, many different chemo drugs and ways of receiving them. For me, however, it is intravenous, through a port that was surgically implanted. In a short procedure, the PowerPort* device is implanted, which means it is placed completely beneath your skin, and the catheter is inserted inside one of the large central veins that delivers blood to your heart. The PowerPort* device is usually implanted on the upper chest. Here is a diagram of it. You can see the port under the skin and the cap/needle that is attached when drawing blood or infusing chemo drugs.

In my case, I receive drugs through this for about three hours every week. This massive infusion of killer drugs results in many side effects. Some of the ones you may be least likely to understand include fatigue (that's right, it is not the fatigue you are familiar with), neuropathy and the inability to enjoy the taste of foods and beverages. Here are some descriptions I came across which may help this make a little more sense.

FATIGUE - (from the iccnetwork) 

Who We Are

We are among the majority of people who experience fatigue throughout our battle with
cancer. (1) It is a near universal problem that affects approximately three quarters or more
of us and is the most common side effect of our cancer experience. More than half of us
experience fatigue on most days, and it affects our daily lives more than pain or nausea.
Fatigue associated with cancer is not the kind that will disappear after we take a nap or get
a good night's sleep, but tends to be more severe and ongoing. For those of us who are
fortunate, our fatigue is mild and temporary. For others, it can last for months or sometimes
years after treatment and makes going about our daily activities nearly impossible.
The impact of our fatigue is profound and affects our ability to work, walk short distances,
be intimate, and meet the needs of our families. We often have difficulty performing even
the most simple of tasks such as cooking, cleaning, or taking a shower. Some of us experience
difficulty concentrating or making relatively simple decisions. It even causes us to
feel distant from our friends and our social networks.
We call our specific type of fatigue CRF (cancer-related fatigue). It is one of the most debilitating
yet least understood or addressed side effects of cancer treatment. (1) Although the
majority of us as patients experience fatigue, it is also one of the most overlooked and
under-treated side effects of cancer. In fact, CRF is now the most important untreated side
effect of cancer today. (2) It is by far the most problematic symptom that affects our overall
quality of life. We feel completely exhausted - physically, emotionally and mentally.
The exact cause of our CRF is unknown. Sometimes the root of our fatigue is caused by the
cancer itself; in other instances, it is caused by the treatment. What we do know is that cancer-
related fatigue can be caused by a variety of other factors such as dehydration, depression,
anemia, electrolyte imbalances, decreased nutrition, and medications. (1) There is often
more than one contributing cause. It is not predictable by tumor type, treatment or stage
of illness. Usually, our CRF comes on suddenly, does not result from activity or exertion,
and is not relieved by rest or sleep. We often describe it as "paralyzing" and it may continue
even after our treatment is complete.

NEUROPATHY - Neuropathy is the medical term for nerve damage, usually to the peripheral nerves in the hands, feet, arms, and legs. Chemotherapy drugs are toxic to healthy nerve cells, as well as to cancer cells. When those nerves begin to stop working, the result is tingling, numbness, weakness, and pain, even an impaired sense of touch.


Loss of feeling in the hands and feet can make it hard to pick up small objects and cause clumsiness and difficulty walking. Some people with nerve damage first notice a "pins and needles" feeling, not unlike when an arm or leg falls asleep.

TASTE CHANGES - There are 4 main types of taste: Sweet, sour, bitter, and salt. Sense of taste is primarily located on the tongue. Each type of taste is located within taste buds on different sections of the tongue. As you chew your food, it mixes with saliva and as it comes in contact with the taste buds, messages are sent to the brain regarding your sense of taste. The brain processes the messages and helps you identify different tastes. Taste changes are common during chemotherapy. The exact reason for taste changes is not clear, although it is thought that it is a result of the damage to the cells in the oral cavity, which are especially sensitive to chemotherapy. About 50% of patients getting chemotherapy experience taste changes. Most people report taste changes involving a lower threshold for bitter tastes and a higher threshold for sweet tastes. Some drugs also produce a metal taste during the actual intravenous infusion. In addition, the association between taste of food and chemotheraphy may lead to taste changes. Chemotherapy loss of sense of taste can occur purely from the association of an experience of nausea and vomiting with chemotherapy. Taste changes may occur during therapy and last for hours, days, weeks, or even months after chemotherapy.

Found another chemo patient blog and she described it thus...But then, after a week or so, you start to notice this taste in your mouth. Little do you know you won't be able to rid yourself of this taste/smell until your chemo is done. It's not altogether unpleasant at first, it's metallic, but that's its only similarity to anything else I can imagine. As more time goes by, this taste is more and more disturbing. It's especially noticable when you're actually getting the chemo done (and some kind of strongly-flavored food is required to help ease it), but it's noticable all the time. It makes you feel sick. Whenever you visit the restroom your urine smells like it too. No matter how much you eat or drink, that taste is ever-present.

Don't know if these descriptions help, but I do realize that the scope of these things is hard to comprehand so thought I would give it a try. Anyway, tomorrow is treatment #11 in Round two. Not looking forward to six hours at the Cancer Center, but being one step closer to the finish line is always a positive. Hope you have a great Friday and a beautiful week-end.

Later.