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?

Delano Park 12-Hour - 3/12/11

Sunshine! I had been waiting on it all week. An office mate and I decided that the reason we felt so "blah" was lack of sunshine. On Thursday, I told her that I was losing my permanent tan, and that this weekend will put me back on track, lol! I came back from Decatur, AL with a slight tan line from my watch being on my left wrist. I'll take it. Bring on Spring!

Last year at the Delano Park 12-Hour, I managed 46 miles. This year, I only did 36 miles. I could have done a little better if not for two naps that totaled about 90 minutes, but I still would not have matched last year's distance even if I had stayed awake the whole time. No biggie. I was just happy to be outside moving in the sunshine. The best part of all was spending the day with my running buddies.

The course is a one mile loop on smooth, crushed gravel throughout the park. Even though there are a couple of risers, I still consider it a flat course. It's a great race to push for a 12-Hour PR. The one aid station at the start/finish area was fully stocked. I couldn't take full advantage of it, however, but I did enjoy two slices of cheese pizza, a couple of mini-powdered donuts, a few chips, and Mountain Dew throughout the day. After the race, we had the awards ceremony and dinner at a local church, and among other things, they served salad and a veggie lentil soup that was delicious.

My running buddies were awesome as usual! There are no words to describe Fred (OH). He finished the Rouge-Orleans 126 miler the weekend before Delano, and he still ran 51 miles on Saturday. He will probably double this distance at the Howard L. Aslinger Memorial 24-Hour Endurance Run this upcoming weekend. I will again have the opportunity to witness a great performance as he laps me over and over again. Fred is training for the Self-Transcendence 10-Day in New York next month. He usually runs about 500 miles in that race. I can't even imagine the physical and mental fortitude that accomplishing that feat will take. Fred is truly an inspiration and a sweetheart of a man to top it off. Check out Fred in action below in the long black tights.

Andy (FL) was there. He wanted to run a 50K and call it quits so that he could have dinner with his family. He finished the day with 33 miles. With upwards of 500 marathons/ultramarathons under his belt, he is a remarkable runner. Since he was on a mission, I did not chat with him as much as I would have liked, but we'll see each other on the trails and/or roads soon. Below, Andy is passing through the aid station and timing area on the right. On the left, several of the relay teams had set up their tents to hang out while waiting for their runners.

I have a new running buddy, Steve. He says we've met before, but neither one of us could remember which race it was. We shared some early laps together getting to know each other. He splits his time between Little Rock, AR and Chicago, IL. He and his wife are trying to sell their home in Chicago so they can be together, but she still works at a job that she loves, while he's decidedly retired. He is such a treat. His goal was "40 miles or 4 o'clock, whichever comes first". He was right on, too. He ran 40 miles in just under 10 hours (the race started at 6:00 a.m.) and then called it a day. I am genuinely impressed!

I spent most of the day with my running buddy, Gene (IL). We have run too many races to count together over the years. I know that if I can keep up with Gene, it's going to be a great day. Again, I had decided that I was going to take some time off from racing this year. But that decision causes me such mental anguish. At Delano, I was like a kid - talking and joking with everybody, running when I felt like it, walking when I couldn't run, and singing (making a "joyful noise" as stated by Fred (OH) as he passed me, lol) and dancing to my MP3 player the few times that I was alone on the loop. I miss racing every weekend. The last few months I have only been racing, on average, two weekends out of the month, but I wanted to be out there more. Gene, who is 75 years old, ran 32 miles at Delano. That's an amazing accomplishment, even for someone half his age. He never complained. He talked and joked with several runners throughout the day. He ran happily. Gene runs mostly ultramarathons now and needs North Dakota to finish his circuit of an ultra in all 50 states. He kicked my sorry a$$ into gear and taught me a valuable lesson on Saturday. I will do what I can and be grateful for it. I will no longer whine about what I can't do, because there's a whole lot that I still can do. So, I will "just do it". Because of Gene, I have registered for four more races that I know I can complete (two 24-Hour races, one 12-Hour, and a 30 Miler that has no cut-off). Thank you, Gene, for helping me to see the light!

I am always a little concerned when running buddies drop from the racing scene. I had been asking around about David (GA) because I had not seen him. He was no longer on Facebook and his Blog had been removed from the Internet. To be honest, I feared the worst. But David was there in full force. He's been running but has not been racing as much so that he could spend more time with his family. He is a noble man and has his priorities straight. We walked several loops together, but when he was running, he was really moving, and he finished with 51 miles. We both were so happy to be at Delano on Saturday. I could tell that he missed the ultrarunning scene, because the feeling was mutual. I'm looking forward to seeing him in some future races, now that I know that he is getting along just fine. Unfortunately, I didn't get a picture of David, but below are the "pear trees" along the course that remind me of David - tall, beautiful, and majestic. I don't think David cared too much for the smell of the bloomed trees, but I took in a deep breath every time I passed the trees. They smelled wonderful to me.

My running buddy, Tammy (MD), ran a very impressive 69 miles to finish second overall female and sixth in the entire field. She was happy, smiling, joking, talking, encouraging, and taking many pictures in the process. She was a running machine in her pink attire. "Wow" is the only word to describe her performance.

Heather (AL) has new purple hair, and she looked great out there, finishing the race with 49 miles and the female master's win. Rosemary (KY) is fantastic in every race she enters, one of my favorite 100 mile queens. She even slowed down to walk a few loops with me. I enjoyed her company, and I'll see her on the roads and/or trails again soon. We've run a lot of races together over the years. Well . . . she's always way ahead of me, lol, but she is a kindred spirit. And she rocked 46 miles at Delano!

John (AL) and Fred (TN) each ran a 50K. John is young and fast, so I think he was just doing an easy training run. He walked a little with Gene and me and told us about his work trip to Australia. Fred broke his leg a couple of years ago at the Chattooga 50K in South Carolina, but he is back at it and looking strong in the process.

In addition to the 12-Hour and relay race, Delano has a 50 mile option (with a 12-hour cut-off, of course). Vikena (GA), who was always encouraging when she passed by, Perry (GA), and Scott (GA) ran excellent times in that race. It must be something in Georgia's water, lol.

Running is a great sport that allows you to compete with the elites. I was in awe as the elites lapped me too many times to count. I enjoyed watching them going for their goals. Jamie (CO), Dink (AL), Robert (AL), Liz (GA), Beth (GA), and Susan (GA) are elites whose running careers I follow on a regular basis. It was a pleasure to run "with" them on Saturday as well. And one of these days, I'll have the courage to go up to them (before or after the race, of course) and talk with them.

As a side note, good vibes from Delano spilled over into my health. I had chemotherapy today, after being off for two weeks again because my blood counts have been too low. My CT scan on Friday showed regression in my liver. A 19-millimeter tumor in my liver is now down to 16 millimeters. The lung tumors are stable. My bones are showing no new lesions but a lot of new scar tissue, which is a good thing and means the Zometa is still working. Stability, regression, and a beautiful day with my running buddies at Delano. Tiger couldn't have asked for more.

Black Warrior 50K - 2/19/11

I love my legs. They are long for my 5-ft and 3.5-in frame. And thanks to chemotherapy, hardly any hair remains on them. In the past, the thigh muscles bulged in the right places, the hamstrings had long and thick muscular ridges, and the calves were tight as a drum. Long gone are the beautiful muscles that I worked so hard over decades to maintain. They moved fast at the 2007 Black Warrior 50K in 7:32:39. They moved slow this year in 10 hours. They started one hour and 30 minutes sooner than the remainder of the field, and time wise, they will still be listed as the last finisher of the race. I like to say that my legs enjoyed the trails longer than anyone else's legs, lol.

And what a beautiful trail, even with all the roots, rocks, stream crossings, small ups and downs, and horse poop. It's a runnable course, if your legs are in shape. My legs are not. My legs don't lift like they once did. They are like dead weights. They try, but after a while, fatigue sets in. And then they do what I call a shuffle. My feet barely clear the ground, and I pump my arms to propel my body forward. It's wasted energy, I know, but I can't help it. Oxygen doesn't get to the leg muscles to make them work. I feel like I'm running at altitude. I huff and puff trying to get air into the lungs, but the air gets caught some how, and it doesn't make it down to the legs. I have to be careful, because now, the dizzy spells are pretty frequent throughout the day. The fight to breathe makes my throat raw. My high-pitched girlish voice turns into a raspy, male voice. I always wanted more alto in my voice like Gladys Knight, but this sound that comes from my throat is not what I had in mind. I now wish I had that irritating high-pitch back. I can't get air through my noise either, because of the small blood clots that I blow out periodically. I always have a stuffy and runny nose these days. I carried wet wipes with me to take care of this problem during the race. The blood clots are really bad in the morning and then they taper off during the day.

I miss running. I really do. When the field caught up to me, I watched as runners who had taken the regular start, cruised by me as I stepped aside on the single track trail. I did not want to impede their progress. Some spoke as they passed. Some were silent as they concentrated on the task at hand. I truly envied them. Even in my running days, I did not move as effortless as they did, but at least, I was running. Now, I am so embarrassed by my awkward movements that when someone comes along to pass me, I discontinue my shuffle and walk instead. The shuffle is a pitiful sight, but if I'm walking, maybe the other runners will think that I'm taking a little break from the running. The walk and the shuffle are about the same speed at 3 miles an hour, so it really doesn't matter which one I do. When I am breathing comfortably and no one is in sight, I shuffle again. I am so very, very tired and wonder how I will ever make it to the next aid station, not to mention the finish line. And after a few strides down the trail, I am back to huffing and puffing and then I walk for a long way.

I should quit. I know I should. It's not fun any more. It's not fun to struggle at something you love. I've always said that when I stopped having fun at running, I would quit and take up another hobby. But that was before I knew that it would not be an easy thing to do. It's difficult to break an 18-year habit. I'm having a hard time giving up the idea of running. My legs were made to run, but they can't now. No matter how hard I push them, they will not lift. It's the cancer and the treatments for the cancer that are trying to force me to quit. I think if I was quitting for any other reason, it wouldn't be such a difficult choice. I feel like my hands are being forced, and I don't like being pushed in a corner. I always come out fighting. It's the Tiger in me. So I struggle on, shuffling when I can, walking when I can't, and most of the time, huffing and puffing for air. I have to keep going. I just have to. Cancer can not be the reason for quitting.

My right hip has been hurting again, so my shuffle is more of a Quasimodo move. It looks like I'm dragging the right leg behind me. But my most recent CT Scan on Monday was stable. Stable. If stable was on Facebook, I would "like" it. I have been waiting almost four years to hear that word. The little bit of chemotherapy that I've been able to handle (and stay on) has been working. In almost four years, this was the first scan that showed no progression. Stable gives me hope. After stable, maybe regression will follow. After regression, maybe I will get to dance with NED (no evidence of disease). I am assuming that we are on the upswing. I am so grateful. Black Warrior 50K was my reward (and punishment) to my body and mind for doing so well.

Keith, the race director, allowed Andy (FL) and me to start the race early. I kept up with Andy for the first 8 miles, before he found his groove. He has been having back problems, but he says that he does better if he starts off really slow so that his back warms up and then he increases his pace. Other than that, I was alone most of the day. The weather was a little warm. Everyone wore shorts and short-sleeved shirts, while I sported long tights and a long-sleeved shirt. I tied my jacket around my waist and stuffed my gloves into the pockets when it became too warm, but I was pretty comfortable all day. Another runner asked if I was hot in all of my gear. How do you explain without getting into a deep conversation about your health issues? I usually say that I'm just not running as fast as everyone else, so I'm not overheating at all. But for some reason, I wanted her to know that I was cold most of the time because of the chronic anemia. But maybe she didn't understand the symptoms of anemia, and I just confused her. I should have just stuck with the lack of speed answer. It was also the truth.

I didn't eat a lot at the aid stations, although they had plenty of food. My stomach feels so full these days. I eat a lot of small meals throughout the day, but I'm not losing any weight. Nothing tastes good to me. The chemotherapy has killed the taste buds. A potato chip tastes the same as a cookie. I'm just going through the motions of chewing and swallowing. I drank a lot of Mountain Dew to combat some of the fatigue, but it didn't last long. A mile or two outside of an aid station, and I was dragging again.

I am still waiting for the nail on my right big toe to fall off. The nail has partially separated from the toe bed, and it's dark and ugly. It hurts on some of the down hills as it hits against the top of the shoe and feels even worse when I stumble into a root or rock. The tips of my fingers underneath the nails, which are a light purple, are really sore some days, too. Today is no exception. I squeeze my hands into little balls to calm the tingling sensation throughout the day.

Emotionally, I was happy. I was amazed that my legs were working. It was a good feeling. I was out in the forest, enjoying the day, shuffling when I could, encouraging the runners who passed me, joking with the horse people, and giving them the right of way on the trails. They were all very courteous to us runners who were invading their trails for a day. They were impressed that we were running 31 miles that day. Ten hours passed quickly. Despite my struggles, it really was a beautiful day to be out on the trails. I would rather be here than at home on my couch with my feet up watching senseless television.

At the start of the race, we are on a dirt and gravel road for about 2.5 miles before we hit the single track trails. At the end of the race, we run that same road again down to the finish. Towards the end of my races, I always have a little talk with God. While I shuffled and walked the last 2.5 miles to the finish, I thanked him for allowing me to arrive safely, for a beautiful day, wonderful trails, friendly volunteers, Keith for allowing me to take an early start so that I would get an official finish time, and Andy for keeping me company for the first 8 miles. Most of all, I thanked Him for allowing my legs to move 31 miles that day. And then on that lonely dirt road, after 10 hours, after willing my body forward, exhausted from the effort, the tears flowed uncontrollably and I cried. I'm still here, I told God. Thank you, God, I'm still here.

Pat Down - 1/28/11

I have been flying to marathons and ultramarathons since 2004 on a regular basis, but this weekend was the first time that I have ever been pulled out of the screening line for a "pat down". This is truly an unpleasant experience, and later as I thought about it, it was also unnecessary. And it's not just because I know that I'm not a terrorist. It's because I still don't know what the process accomplished. The reason I was pulled for a "pat down" is because the airport that I fly out of has started using the new x-ray machines for screening. A few weeks ago when I flew to San Antonio, TX for the Bandera 50K, both airports were still using the old metal detectors. I have never set off any alarms when I walked through those machines, but the new x-ray machine picked up shadows in my upper torso.

When I stepped out of the machine, a TSA worker asked for my cap. I took it off, gave it to her, and watched as she ran her gloved hand along the inside band of the cap. She explained that she was making sure that there was nothing hidden in the band. I usually wear a cap when I'm going and coming from a race, and in all of these years, this was the first time I was asked to remove the cap to have it inspected. After she gave me the cap back, she told me to step to the side because they would have to do a "pat down". She asked if I had anything hidden under my clothes, because the machine had detected objects on my upper body. Without going into great detail, I told her that I have a port in the right side of my chest and that I have a prosthesis on the left side of my chest. She said that they would have to check this out. What???

Two other female TSA workers joined us and grabbed my duffle bag and the bin that contained my shoes, purse, and a small plastic baggie of toiletries. They led me into a small room and closed the door. One of them explained the "pat down" process, while the other one stood off to the side as an eye witness. As I stood with my legs spread shoulder width apart and my arms out to the side, parallel to the floor, with the palms facing upward, she moved her gloved hands all over my body, from my neck down to my ankles. I beg to differ with their definition of a "pat down". It's more of a rub down.

She started by running her hands along the inside collar of my shirt and then continued down my back. She examined both arms and then moved to the lower part of my body. She lifted up my shirt and ran her hands along the inside waist band of my pants. She then continued to "pat down" my butt and the back and sides of my thighs and calves. She also examined the inside of the thighs, touching, of course, the crotch. Unintentionally, I flinched just a little. By this point, I was totally shocked at the thoroughness of the "pat down". I'm glad I wasn't concealing a deadly weapon because she would have found it.

She then moved to the front of my body. She started again at the inside collar of my shirt, and then, she finally examined the area that had set the machine off in the first place. I stubbornly did not want them to know that I was bothered by the process, but my body betrayed me. I flinched again when she touched the port and the right side of my chest and then the prosthesis on the left side of my chest. The breast and the prosthesis were individually lifted as she ran her hands across the stomach area, which caused me to flinch a third time. My shirt was again lifted up, so that she could inspect the front waist band of the pants and then she continued to "pat down" the front of my legs. The whole process probably took less than five minutes, but I was just about mentally done when she finished. I felt like I had been molested, and if I wanted to get on the airplane and go to my race, I had better be quiet and let her feel me up. The least she could have done was offer to buy me dinner before hand.

Don't get me wrong. I don't blame the TSA workers at all. They were just doing their jobs, and I'm sure they didn't enjoy this part of their job either. For the most part, they were very professional. In return, I was nice and accommodating. And I'm all for homeland security. Do whatever you have to do to keep us all safe. But there has to be a point where you question the "pat down" policy.

When she had finished, she told me that I could put my shoes on, while she went to retrieve my driver's license and boarding pass. The other TSA worker stayed with me. I told her that I fly often and asked if there was a way to get a letter of some sort from my doctor or, alternatively, from the airport saying that I had been through this process before. I don't want to be subjected to the "pat down" every time I decide to board an airplane. She stated that it was not acceptable and that people with hip and knee replacements have medical cards explaining their condition and they were still pulled from the screening line when the old machines were used. She also stated that the new machines would no longer send up an alert for those with hip and knee replacements. I wish she would have stopped talking right there, because the next statement out of her mouth was just as puzzling as her explanation of why a medical card is unacceptable. She said that when I fly next time, make sure that I don't have anything external to my body that can be detected by the machine, because even tampons and sanitary napkins have set off the new machines. That's just wrong! I plainly stated that I don't have periods any more, so that won't be a problem. I guess I need to remove my prosthesis from my bra and then surgically remove the port from my chest and place them in the bin with my other belongings, so that I won't set off the new machines? There has to be a better way! Using a medical card and/or having something on file at the airport about a person's medical situation would eliminate the necessity of the "pat down".

My next point of contention is that if the machine revealed shadows in the upper torso, why in the world do they have to touch my inner thighs or any other areas that do not set off the machine? Am I being unreasonable? To me, although mentally uncomfortable, they should have checked the upper torso only. Heck, you can see the protrusion from my chest where the port is. You don't even have to touch it to know it's there. And if it's a weapon of some sort, I would have to cut myself open to use it. Furthermore, even if I can't feel it, why does the gloved hand of a stranger have to touch my prosthesis while it's on my body? I have no qualms about removing the prosthesis from my bra in a private room for them to examine.

And this brings me to my last point of contention with the "pat down" policy. If the port and prosthesis were the problems, why didn't they at least examine the prosthesis? How did they know that something wasn't embedded in the material by just touching it? So, why was I given a "pat down"? Touching only proved that there was a small device in the right side of my chest and a bigger device on the left side. The x-ray machine had already given them that information. Touching other parts of the body that did not send up an alarm proved that their x-ray machine was right again. So, why even waste time checking areas that don't show up on the x-ray machine? Do they not trust the x-ray machine?

I need to research the "pat down" policy. I admit I haven't read all of it. I made my flight into Phoenix, AZ for the Desert Classic Marathon. That airport is still using the old metal detectors, so I didn't have a "pat down" before boarding the airplane to return home on Saturday night. At some point in time, all of the airports will be using the new x-ray machines. Will I have to subject myself to the "pat down" every time I decide to board an airplane? That's crazy!

Bald . . . Again - 1/18/11

I am completely bald again. I really don't mind. Hair is over-rated for me. For over a year, I have sported a short Afro because I was so tired of fooling with my shoulder length hair. It had to be permed every 6-8 weeks, trimmed, and styled. If I wanted curls, I had to roll it every night, and then fuss with it the next morning. Most of the time, I combed it back and pulled it into a ball at the nape of my neck or left it dangling down in a pig tail. Even permed, my hair was never totally straight. After a run, it would almost revert back to it's natural state, lol. It takes up too much time to keep it up, and if I pay a beautician to do my hair for me, it's expensive. So in October of 2009, my sister cut it off for me. No more perms to deal with. Going natural is the way to go. A male friend trimmed my Afro close to my head about once a month to keep it neat. I loved getting up in the mornings, adding a moisturizer, brushing it, and just going.

I had only two chemotherapy treatments in December, but my hair started to shed. With the next two weeks off from chemotherapy, I thought that I would keep my hair this time. During that time, my mouth sores healed, my taste buds were awake again, my nails have not darkened any more, and the tingling sensations and slight pain at the tips of my fingers have ceased. Unfortunately, I'm probably going to lose the big toe nail on my right foot. The nail has turned brown and has started separating from the toe bed. That's okay, too. I've lost toe nails from running, so it's no big deal. The nose bleeds have finally stopped. I'm still pretty anemic (tired, breathing problems, and cold, unless I'm having a hot flash). There is never any relief from the hot flashes - every hour, all day, and every day. The hot flashes are a side effect of every treatment protocol that I've been on over the past three years. They are inconvenient, but they are just a part of my life.

The hair shedding was so gradual at first that it was hardly noticeable, but then it started collecting on my clothes. The bath tub was full of little hairs, as were the bathroom floor and sink, and clean up became a real chore. My scarf that I wrap around my head during the night would also collect hairs by the next morning. But my Afro was so short and thick, that in the mornings, I simply combed out the dead hairs and kept going. There were no visible bald spots. It was coming out pretty evenly. My scalp was a little tender, which is a clear sign that the hair was separating from the follicles, but I still didn't think I would lose much hair. I'm losing hair on other body parts as well: leg hair, nose hair, and pubic hair. My underarm hair has not grown back since I last shaved. I know, TMI! My thick eyebrows and eyelashes are fully intact so far, however. Hair loss during chemotherapy is a very strange (and random) process.

On Saturday, after washing my hair, I noticed that the bath tub had more hair than as of late. When I towel dried my hair, a large patch of hair was missing on the right side of my head, from my temple to about the middle of my head. It was completely smooth. The funny thing is that this was also the first bald spot that I had when I had chemotherapy in 2003. On Monday, I was able to just run my hand across my head and come away with a hand full of hair. It was time to ask my male friend to shave my head. As he cut away the hair, he also noticed several smaller bald spots at the top of my head. The remaining hairs clearly had to go. As the scalp was tender from the hair falling out, he carefully razored off the last of the remaining hair. Good riddance! I no longer have to worry about cleaning up all of the loose hairs all over my town house.

Thankfully, today my blood counts were just high enough to restart my chemotherapy treatments. The platelets are not clotting, and the lab could not run the kidney and liver tests that they needed, but we still proceeded. I've never had blood pressure problems, but the numbers were out the wazoo when they checked. We may have to deal with that at some point in the future. Most importantly, my oncologist decided that I should remain in the clinical trial. Apparently, my bald head has taken command of the situation, lol. We are back on track.

Happy New Year - 1/4/11

"Your blood counts are too low for treatment today."

I felt like someone had punched me in the stomach. The nurse proceeded to point out numbers highlighted on her papers. None of the numbers meant a thing to me, and I think I must have zoned out while she went through what my numbers should be and what they actually were. She left the treatment room to check with my oncologist and the research nurse to make sure that it was okay for me to leave for today. I was left totally stunned. Even on my worst days of chemotherapy in 2003, I never missed a treatment. My blood counts then were so low that I had to get shots of Aranesp to help my body produce red blood cells. This chemotherapy was considerably easier on me, and yet, it had already started causing problems that I had no control over.

For a brief minute, I went into panic mode. I've only had two chemotherapy treatments. Today would have been my third and then next week is a rest week with no treatment except for the oral chemotherapy pill (Everolimus or a placebo) that I take every day while I'm in the clinical trial. I'm convinced that I'm taking the placebo and not the real thing because I have not had the infamous rash on my face that everyone seems to get while taking Everolimus. However, I'm okay with that. Being a part of the clinical trial still opens up treatment options for me if something doesn't work down the road.

While I waited, I watched as two nurses tended to a patient who was receiving supplemental oxygen. She was so small and fragile. I wondered if she was strong enough to have her treatment today. Here I was looking as strong as an ox, and I wouldn't get my treatment today. I felt like the last kid standing on the playground who didn't get chosen for a team to play kickball with the other kids. I felt like a failure. I felt like I had done something wrong to bring the blood counts down.

The research nurse finally came into the treatment room and sat beside me. The white blood cell counts were her biggest concern. She gave me a prescription for a 7-day antibiotic. She asked how I was feeling. To be honest, I wasn't 100%, but I didn't feel bad enough that I shouldn't have treatment. I told her that I had what I thought was a cold last week, and by Friday, I had lost my voice. Five days later and I still was barely able to make a sound. I had a cough that produced a lot of phlegm. She was really interested in the color of the phlegm and was not happy that it was green/yellow, as that indicated an infection. She asked if there was blood in the phlegm. There wasn't, but blood comes from my nose daily. She asked if I had a fever last week. I'm sure I did when the cold first started, but it had been before I lost my voice that I'd had a fever. My temperature was normal when it was checked this morning. The mouth sores have started, and already, I was unable to taste my food. The mouth sores burned, especially when I ate and drank. But I wasn't nauseous, so I considered myself lucky. I've continued to eat, but unfortunately, my stomach feels full all of the time, so I've been eating smaller meals. The tips of my fingers have started to bother me, too, especially if I accidentally hit them against anything with even slight pressure. The nails are a light purple. Another treatment would more than likely make them a little darker. My hair was shedding, but it was not coming out in clumps. Again, another treatment would probably produce some hair loss. Having chronic anemia for three years now, I was always tired, but I was not at the point of being fatigued from the chemotherapy. There's a big difference. Clearly, the Taxol and Avastin were doing their jobs. I didn't want to interrupt them.

The research nurse said that I should also discontinue the oral chemotherapy pill. When I return in two weeks to see my oncologist, I had to bring in the unused pills. If it was determined that I could continue with the clinical trial, I would be given a new set of pills. I thought that missing this week's treatment was just a break in the action to allow the blood counts to come back up and that, in two weeks, I would be back in the treatment room getting the Taxol and Avastin. It finally hit me that my current treatment protocol was under consideration for termination after only two weeks. I wanted to protest that I felt fine, that I had all of next week to get my blood counts back up, and that, given the chance, I could do this. But the decision to send me away was non-negotiable. It was obvious that my oncologist and the research nurse were not going to let me deteriorate to the point where they couldn't bring me back, even if I was willing and able. They would nip things in the bud as they happened. They were that good. I, on the other hand, was so unhappy. I never wanted my treatment as bad as I wanted it this morning. I needed to stay in the clinical trial as long as I could. I knew they understood that, but I wanted to remind them. I wanted to plead my case. Instead, I promised to call them if my temperature reached 100.5, promised to wash my hands often, and promised to stay away from children and anyone that even looked like they had a cold. I sadly gathered my purse, coat, and new book and magazine that I was looking forward to reading during what would have been my three hour chemotherapy session. The good thing was that I would get to my office earlier today. The bad thing was that all I could think about was that we had just given the cancer cells two free weeks to wreak havoc on my body.

Spinal Tap - 12/15/10

This week has been busy. By Friday, I was ready to pull out my little Afro, lol.

On Monday and after almost three months of trying to see a neurologist for my headaches, I was called in for an appointment. I had an appointment for the 27th of this month, but I was also on a waiting list to be moved up if there were any cancellations. The neurologist looked at my last MRI and determined that three things could be causing my headaches. It turns out that my oncologist was not so far off when she said that the images from my MRI appeared as if I had had a stroke. The neurologist said that there may be some vascular issues that are causing the headaches. The most unlikely case would be multiple sclerosis. I even ruled that possibility out, and I'm not a doctor. The most likely case is that the cancer is in the spinal fluid. He scheduled me for my first ever spinal tap (i.e., lumbar puncture) on Wednesday to either confirm or rule out this possibility. Next month, I'll have another MRI to see if there are any changes. In the mean time, since I've been rationing out the steroids, the neurologist will authorize my oncologist to prescribe more steroids until we figure out what's causing the headaches. I'm not excited about taking the steroids, but they work. Metastatic breast cancer has taught me that just because I'm strong enough to deal with pain that I really should not if it's not necessary.

On Tuesday, I had another PET Scan. I'm not sure why my oncologist ordered another one so soon since my last one, unless they needed a base line before starting the chemotherapy next week. My poor veins in my one usable arm for injecting the radioactive dye are pretty swollen, bruised, and sore. I wish that they could use my port, but they can't, so there's no use griping about it, I suppose.

On Wednesday, I had the spinal tap. Like I always do, I did a lot of research on the procedure over the last couple of days. I was not comfortable with what I read - horrible back pain, inability to walk afterwards, terrible headaches, lying down flat for hours, and blood patches inserted a few days after the procedure due to complications. I am happy to say that my spinal tap resulted in none of these adverse side effects. There was very little pain, besides the initial prick of the needle for local anesthesia. There was some pressure in my spine when the fluid was being drawn, but even that wasn't too bad. Other than that, I just laid very still on my stomach with the right leg bent up and my face turned towards the wall. It took the radiologist all of 15-20 minutes to finish the procedure. The preparations prior to the procedure (answering questions and having my back scrubbed for sterilization) and the two-hour "recovery" (lying flat on my back with as little movement as possible) after the spinal tap were harder to deal with than the procedure. I'm still waiting for the results of the spinal tap.

On Thursday, I had an echocardiogram. The whole point of the test is to see if my heart is strong enough to handle the rigors of chemotherapy and to have a base line of my heart's function, since the chemotherapy drugs can cause congestive heart failure. Other than seeing snakes or bears on the trail during a run, it's a good thing that I don't scare easily. I'm hoping that my background in running mitigates any heart problems that may arise from the chemotherapy.

After the echocardiagram, I had an appointment with the research nurse for the clinical trial. Honestly, I think she could have told me what she needed to tell me over the telephone, but I know how my oncologist's office is. They like all of those warm and fuzzy, make you feel good interactions. I'm not going to complain. We had a nice chat and ended the conversation with the both of us anxious to get started on the new treatment. She is really optimistic about the chemotherapy getting my liver and lung back on track, so that we can then go back to working on the cancer in the bones.

I'm mentally exhausted. I hate missing time off from work, and I even missed my section's annual Christmas breakfast on Thursday morning at the Loveless Cafe. The biscuits there are wonderful - not that my hips need any biscuits, lol.

Over the last few days, I've been reading disturbing articles about Avastin, one of the chemotherapy drugs that I will be using. It appears that the FDA is revoking its approval of the drug for treatment of metastatic breast cancer because the success rate does not outweigh the side effects of the drug. That's my rough summary, and there are all kinds of details in regards to the revocation. I have a lot of questions for my oncologist before we start this treatment protocol. The articles indicated that those patients using Avastin would not suddenly be taken off the drug, but if the drug has been proven not to help, my question is why stay on it? And in my case, why even start taking it?

Okay. So, Friday finally arrives. My entire Division had its Christmas breakfast at Montgomery Bell State Park. This is a bigger deal than my section's breakfast, so I was glad that I was able to attend. I had biscuits, but they were not as good as the ones I would have had at Loveless Cafe, lol. After the breakfast, I left for my six-hour drive to Huntington, IN for the HUFF 50K. I was so ready to hit the trails and stretch out my legs for a long run. It was going to be cold, with highs in the low 20s. There had been snow all week, so the trails would be covered. But still, I was ready. I would look like the Michelin Man with all of my clothes to stay warm, but all I could think about was running for hours to clear my head.

It's been a couple of years since I've run HUFF. It's a relatively easy 10.5 mile loop (repeated three times), with a few miles of road for easy running to make up for any slow time on the trails. Besides a couple of ups and downs, it's pretty flat with very few roots and rocks. It turned out that the snow was hard-packed, so the footing was better than I thought it would be. I've been on this course when the snow was deeper and powdery, and the trail was a lot harder to run on. My ITBs didn't even scream that much because there was very little sliding. The right ITB hasn't been fully functional since the Equalizer 24-Hour in October, and the left one met the same fate during the Mother Road 100 Miler in November. Once my toes warmed up and since the ITBs were behaving, I was moving well, slowly as usual, but having a good day. So, it was with a heavy heart that I was pulled from the race after the second loop because I was over the cut-off to start the last loop. Well . . . isn't that just how the rest of my week had gone, lol? What was I expecting? Groan and sigh, lol.

Christmas is coming up. I still have presents to buy for the family. Other than trying to catch up on projects at work, that will be the focus for this upcoming week. I'll then spend the long holiday weekend with the family, which is always an enjoyable experience. Even though I start chemotherapy on Tuesday, this upcoming week will be a major improvement over this week. I'm sure of it.