You Don't Look Tired - 5/10/11

"Did you have treatment today?"

"Yes," I responded without going into details. Because I arrived at my office in the late afternoon on a Tuesday, my co-worker should have known the answer to the question before it left her lips. I have had chemotherapy three out of four Tuesdays a month for the past six months. The routine has not changed. She knows this, and she still asked the question. We were about to embark on another one of our cancer discussions.

"So, when do you get tired?"

I almost didn't answer the question, but then I gave her the benefit of the doubt. Maybe she was just curious. Maybe she was concerned. I don't mind answering questions of curiosity or concern. I would rather people ask me about metastatic breast cancer than for them to assume something about the disease that is incorrect. With breast cancer as prevalent as it is, women and men should gather as much information as they can about the disease. I won't force it down anyone's throat. I rarely bring up cancer in daily conversations, unless I'm asked. It's like with running. I won't initiate the topic, but if asked, I'll talk about it until the person's eyes glaze over. However, with this person, I know that it's not about curiosity or concern. I was going to let it slide one more time.

"I'm always tired," I answered. It was short, stated nicely, and to the point.

"You don't look tired," she said simply.

At that moment, I wanted her out of my office. I stared and typed at my computer, hoping she would say what she had to say, get the blunt message that this conversation was over, and then leave my cubicle. I'm sure she didn't mean to be insensitive, but I think she was trying to get a more detailed explanation out of me, and I was not in the mood today.

She's done this to me before. In 2003, the chemotherapy "cocktail" that I was on made me very ill. I was nauseous mostly all day and every day for three months before my mastectomy and then three months following my mastectomy. My stubbornness would not allow me to vomit. I learned early on that slipping in very small meals throughout the day when I wasn't feeling too badly helped me a lot. Those rare moments when I thought my body would not rebel were the best times to sneak in some Sprite, a cracker, or some tomato soup.

In 2003, the conversation went similarly to the one above:

"When do you get sick?"

"I'm always sick."

"You don't look sick."

I mean, how am I suppose to respond to that? Maybe she thinks she's complimenting me in an off-handed manner. Maybe her statement is synonymous with, "but you look good," which is what I normally get from other people. Or maybe I was reading her wrong. Maybe I was being overly sensitive.

She is the type of person who comes to work when she doesn't feel well and proceeds to tell everybody in the office what is wrong with her on that particular day. She's had so many illnesses since she's worked in my office that I'm surprised she hasn't keeled over by now. Don't get me wrong. I don't wish her any ill will. I know that she does it for attention. I even play into her little game. The game gets old, but I won't say to her what she says to me. She really does look sick, hobbling when she's had a foot problem, a back problem, or a shoulder problem. Her eyes look tired and sad when she has a headache or her allergies are bothering her. But just because I don't profess to the office my health condition on a daily basis like she does, doesn't mean that I'm not ill or that I'm not tired. When asked, "how are you," I will not go into a long dissertation about how I'm feeling. I have to be caught off-guard, in a talkative mood, and with a person that I trust before I do that. I will only do that with a true friend or family member who I know really cares and is concerned. Someone who is just asking so that they can compare illnesses will not get the same answer.

I don't want to burden my friends and family every day with what's going on. Metastatic breast cancer is a chronic illness, just like, for example, diabetes. On a daily basis, a diabetic deals with blood sugar levels, what to eat, what not to eat, when to eat, when to take insulin, when to exercise, etc. I'm sure he or she doesn't work diabetes into every conversation and with every person that is encountered every day. There are a couple of diabetics in my office, and although I will ask how they are feeling occasionally, I have never said to them, "wow, you sure don't act like your blood sugar level is through the roof." Wouldn't THAT be inappropriate?

Whether I want to believe it or not, whether I appear sick or not, or whether I look tired or not should not be the determining factor about my situation. I am sick, and I am tired. I accept it, and I go on, but I don't give in to it. I am not going to mope around like I lost my best friend. I'm going to come to work showered and dressed professionally. The thin hairs on my head are going to be brushed neatly. I'll wear cute earrings to try and detract from my bloated face (a side effect of the steroids). And when someone asks me, "how are you," my standard answer is: "I'm good. How are you today?"

In general, I believe that people are decent. They want everything to be well in your world. No one wants to hear about a co-worker, friend, or family member who is having a bad day, a bad month, or, bless their hearts, a bad year, especially if they are not in a position to do anything about it.

So, let's get back to my co-worker. Does she think that I'm lying about my health because I don't look sick to her and I don't seem tired to her? What is she really saying? Does she want me to look as bad on the outside as I feel on the inside? Is that validation and justification for her? Is it a case of her just not really knowing what to say to a cancer patient? Does she really mean, "despite everything that you are going through, you look very well?" I don't get it. It makes me angry, rustles my feathers, and rubs me the wrong way because I don't get good vibrations from her when she says these things.

Maybe the next time she asks the question, I'll go into great details about how I've been feeling for the last six months. I should tell her that the skin hurts to the touch when I lose hairs from my head, eyebrows, legs, arms, arm pits, pubic area, and crack of my ass. I should tell her that the fatigue is really causing some quality of life issues for me now. After I take a shower, I have to sit down on the toilet for a few minutes, to keep from passing out on the floor, because I feel like I've exhausted that last bit of energy from body. I should tell her that getting out of the bed in the morning is a process. I have to sit on the edge of the bed and wait for my body to adjust. I wake up tired. My legs are weak. I'm dizzy. I'm breathless. The mile walk from the parking lot to my office takes me about 20 minutes, and I'm huffing and puffing loudly and quickly the entire time because it's a gradual uphill journey. I have to go slowly, because otherwise, my legs feel like lead from lack of oxygen. I get dizzy from trying to take in too much oxygen at once.

Maybe I should explain to her that it's truly a miracle that I can continue to do my races. I should tell her how I struggle with the pain in my hips and back from the cancer, the nausea, the breathlessness, the dizziness, and the weakness in my legs that inevitably come during the races for hours and hours. I should tell her that I shouldn't be out there and that I have to take special care of myself so as not to burden the race director or other runners with my fatigue and sickness. I should add that, even though I am physically incapable of completing the races in a decent time, I'm mentally feeling really good about myself because, regardless of the setbacks, I'm still out there on a beautiful day (even if it's cold and rainy) and on a beautiful course (with the endless hills, stream crossings that wet my feet, and roots and rocks that hurt my neuropathic toes). I'm having fun with my wonderful running buddies and doing what I love to do. Maybe I should tell her that it empowers me and gives me hope, that I'm trying to be tough, and that I'm showing cancer who's the damn boss. Do you think she'd be interested in hearing those details?

Or maybe she wants to hear about the day after my races. I can finally sleep, because the energy is totally depleted. I can finally eat and drink because my stomach is growling and I am thirsty. I am incapable of doing anything besides sleeping, eating, and drinking, but I finished another race the day before and I'm totally ecstatic about that small accomplishment. I feel like I have a love hangover, and I can't wait until the next weekend to do it all over again. She doesn't run, so she would probably not really understand trashing a dilapidated body and feeling damn good about it afterwards.

Maybe I should tell her that my tongue feels numb, that I have no taste buds, and that the mouth sores are painful. I love spicy foods cooked with peppers, onions, garlic, herbs and spices, but it all irritates the mouth sores. Besides, I can't taste them, but it doesn't prevent the food from setting my mouth sores on fire. We should talk about not being able to get enough food in my body because my stomach feels full all the time, and yet, I can't seem to lose any weight. While we're at it, we should talk about the extra 30 pounds that I have been carrying around over the last four years, from not being able to run as much as I would like, and because I can only do what my back and hips allow me to do. Let's talk about my raw throat and raspy voice that occurs for 3 or 4 days after treatment or when I've been huffing and puffing for too long. How about I tell her it hurts to button my pants, to type on the computer, or to pick up a spoon or fork to put food into my mouth because of the neuropathy in my fingers? How about the toe nail that I lost and the pain I feel when my toes touch the top of my shoes? Hey, here's a good one - my bleeding nostrils. It is really grotesque in the mornings, tapers off during the day, and picks back up during the night. Blowing the blood clots out and then having a runny, bloody nose for the next few hours is really exciting. We could get into the constant coughing and resulting phlegm, but that's just as nasty. I do not dare leave home without tissues.

Let's talk about the debilitating headaches that I'm still having. The neurologist has ruled out cancer involvement, but I'm still having them. Let's talk about the hot flashes that I have every hour, all day long, since 2008. They are a side effect from every treatment that I've been on for the last three and half years. During the day, they're irritating to say the least, but at night, I wake up every hour, tossing the sheet and comforter, grabbing water from my bedside, and fanning myself until it goes away. Then I'm cold and wet, and I pull the covers over my naked body and sleep for another 55 minutes or so until the next hot flash occurs.

Let's talk about the steroids, that keep me wired, even though I'm tired. I can't focus for long periods of time, and even though I want and need quality sleep, I rarely get it. Let's talk about my high blood pressure, a side effect of the Avastin, one of my chemotherapy drugs, and the high blood pressure medication that I have to take that doesn't seem to be working. My low blood counts (red, white, and platelets) are worth a few minutes of discussion, thanks to the Taxol, another one of my chemotherapy drugs. Let's talk about the hip pain that I still have. Some times it's a dull roar and at other times it's screaming murder, but make no mistake about it, it's always there. Let's talk about the tracks in my right arm because my left arm can't be used for blood draws and contrast injections for the scans due to lymph node removals in 2003. Several veins in my right arm and hand have been blown. The veins are swollen, painful to the touch, and slow to heal. My arm is in multiple shades of black and blue.

I really don't want to complain, but since I'm telling her all of this, I may as well tell her about my mental state. It's really hard dealing with all the little problems from the cancer and the treatments. Some days I don't know if I'm coming or going, because so many things are going wrong at the same time. How can I issue a technically sound permit to my facilities if the tips of my fingers are hurting from typing the permit conditions on the computer, while a hot flash is occurring, sitting in a pool of sweat, and then five minutes later, I'm shivering from the cold, and then I unconsciously swallow and the back of my throat throbs from the pain, or my tooth accidentally touches one of the sores on my tongue? When I get up from my desk after working for more than a few minutes to go to the printer to retrieve a document, I have to slowly stand up and stretch the hip a little before I walk away because the pain is begging for attention. But before I walk away from my desk, I feel a stream of blood running from my left nostril, so I grab a tissue to blow, and out comes a couple of blood clots. The once white tissue is now completely soaked with bright red blood.

It's close to lunch time, but my stomach is not growling from hunger pangs. It's still full from the orange juice or green tea that I had for breakfast, even though I know that's not enough to sustain me until dinner. And then what should I have for lunch? It doesn't matter. Nothing I eat has flavor to it, and after a few bites of food, I have to push it aside until my stomach opens up some room for the remainder of the meal or until the mouth sores stop hurting. And I'm tired. I want a nap so badly, I want to cry. But, even if I laid my head on my desk for a few minutes, it will be time for another hot flash, which will wake me up.

I may not look sick and I may not look tired, but there's enough going on in my body that I know that I'm not a well person. I don't want sympathy. Am I suppose to go through the day, disheveled, moping, cursing, placing the back of hand onto my forehead, walking around the office stating, "woe is me," hoping that someone will see me and ask me "what's wrong?" Should I proceed to waste 30 minutes of their day with bad news? That's not me. Sure, I'll tell it to the Blog all day. That's the purpose of the Blog, to listen without judgement. But I'm not going to burden and alienate my co-workers, friends, and family about how I'm feeling on a daily basis. Let's just assume that six months of chemotherapy is cumulatively tough on my body and leave it at that. When I say I'm tired or that I'm sick, regardless of how I look on the outside, my co-worker should not be flippant and say that I don't look sick and that I don't look tired. She has not earned the right to discredit how I feel. I should tell her that. I should ruin about 30 minutes of her day telling her how sick and tired I really am. But, you know what? This person has known about my Blog for years and will periodically ask about how to assess it, but I doubt that she's even read one post. That says to me that she is neither curious or concerned. What in the hell is she expecting from me?