Sunday, December 6, 2009

In loving memory of Marilyn DeCarlo.

Another one of my September/October marathon events was the Avon Walk for Breast Cancer. I started doing this event because one of my good friends was diagnosed with breast cancer 2 ½ years ago. She was only 36. Because of this, a walking team quickly formed. The name of our team was Keepin’ the Faith.

The walk is pretty rough. You walk a marathon the first day. You camp. Overnight. In a tent. The next morning at o’dark thirty, you have to get yourself up, pack up your sleeping bag and tent, then walk a half marathon. By the end of day two you have walked almost 40 miles. Not impressed? Next time you take a drive, clock 40 miles on your car. It’s either impressive or insane. Oh, and did I mention—you have to raise $1800.00 before they will even let you participate? (These are the not-so-fun aspects of the walk.)

The bright side of the walk is that you are surrounded by hundreds of women (and a few brave men) who are all walking together for one cause. It’s fun—there’s pink everywhere: pink ribbons, pink clothes, pink hats, pink hair. One guy had shaved his head, except for a pink ribbon. Another person had a dog with a pink ribbon sculpted into its fur. People speak freely about breasts—and every name in the book is used for them. It’s quite comical, really. A group of Harley-Davidson riders provide crossing guard services. Their club name is ‘Scooters for Hooters’. People in the community come out to support the walkers. They handout drinks, food, stickers, bandanas, buttons, tiaras, balloons—almost anything you can think of—to help the walkers along the way, physically…emotionally…psychologically. If you ever have the chance to do it, I highly recommend it.

I walked in 2007 because my sweet friend, Marilyn, was diagnosed with Inflammatory Breast Cancer (IBC). This is a rare form of extremely aggressive breast cancer which does not present itself in the “normal” breast cancer symptoms. The tumors do not come in clumps or masses, they come in sheets or nests, so you won’t feel it if you are doing your monthly self exams. (Please tell me you are doing them!) IBC actually feels more like mastitis. Your breast can be hot to the touch and it can get red. Then it can start to swell. Sometimes it can swell up to 2 cup sizes, virtually overnight. It’s important to educate yourself on what to look for, both with IBC and “regular” breast cancer, but especially IBC, because by the time it is diagnosed, it is usually in Stage 4 (the final stage). This happened to be the case with Marilyn.

The 2007 Walk was exciting because it was new. I walked with a team of 15 women, Marilyn being one of them. We wore our pink shirts. We walked together, until blisters claimed one of our girls. She met us at the end of the walk. We had fun. We laughed and talked and joked and it was hard to believe that Marilyn had chemo two days before. Every time the other 14 of us started to get tired or started to feel a pain, we would look at Marilyn—and we’d push on. Our team started out dead last the first morning. Not that it’s a race, because it’s not, but we were mortified. Last? We had psychologically crippled ourselves before it even began…and so, we decided that we needed to step it up. And, thanks to Marilyn’s sister, Kathy, we started to pass the other walkers. We skipped lunch (lunch at 10 am) by putting our food in a bag and eating while walking. We turned into a hard core team of Breast Cancer Warriors…which was all fine and good until about 12 pm when my stomach decided that it never agreed to do this walk and tried to slow me down by getting my bowels to gang up on me. Since Kathy only authorized rest stops for grabbing a snack, grabbing a drink, or (quickly) going to the bathroom, this did not bode well. By this time we were in the top 200 walkers, many of which were adhering to this militant mind-set for the walk, so that was the good news—we were ahead of the pack. The bad news was that potty breaks were in—you guessed it—port-a-potties. (Note: I find port-a-potty use tricky…the phone booth size rooms are always hot and smelly, so I start to sweat the moment I shut the door, and I have to hold my breath because I do not do well with the smell, and being a germophobe, I have to hold onto the interior handle and balance my backside over the black hole to do my business, then (in this particular situation) there were other challenges to consider, such as the water bottles attached to my fanny pack that had to be strategically placed out of the line of duty, the time factor due to the lines of hundreds of walkers waiting impatiently on me to hurry, etc.) I am so glad that I was not a walker who had to use the toilet behind me! But I guess my dire need to use the loo helped me to walk a little faster. Diarrhea on a 26 mile walk is not pleasant, so if you decide to do an Avon Walk, which I highly recommend, just try to do it without having diarrhea, because walking 26 point something miles, with diarrhea, is something that I recommend not so much. Even when the walk was over for the day, and we were back, safe and sound at the camp site, my stomach did not let up. I had to go continually until 10 pm. This also posed unique challenges because, when was the last time you used a port-a-potty that had good lighting—if it had any lighting at all? These did not. The camp site toilets also happened to be at the very edge of the park where we stayed, which was probably a good half mile from the tents. So, even you weren’t impressed with the 40 mile distance back up there in paragraph 2, you can add another 36 miles onto my total mileage…because I had to go that many times…in the dark…in the port-a-potty. You do the math. Day 2 was much more pleasant. I had the good sense to eat small amounts of very bland food—and carry a bottle of Immodium with me. We finished around 12:30 and we carried Marilyn over the finish line. We felt amazing—tired, yes…sore, some of us…but we had done it! And right at the end of the finish line was a booth to sign up for the next year. I think the runner’s high most of us were on—or the delirium—made most of us do it.

2008 was going to be another great walk. We added 5 people to the team. We knew what to expect, we were seasoned walkers. I only had one problem. No, I was not diagnosed with Irritable Bowel Syndrome. I was going to be 8 ½ months pregnant at the time of the walk. My doctor said she would clear me to walk, but Avon could not guarantee that their medical staff would as well. So I decided to sit this one out. I went to the team dinner the night before the walk started, and I was there at the finish line, but I wasn’t there for the blood and guts (and sometimes diarrhea) of the walk. Marilyn, however, walked again. She had appeared to be cancer free in January of 2008, but by May, it was back in full force. It had spread to her stomach, her liver, her spine and her brain. This inspirational woman had been through more chemo, radiation, gamma-knife radiation on her brain, full brain radiation, several surgeries, a double mastectomy, reconstructive surgery, and a number of other assorted procedures, but she still walked the 40 miles. I had baby number two seven days later. (I might have had her sooner if they had let me walk. Maybe, though, they were thinking that I would have to come up with another 1800 dollars…?)

In 2009 Marilyn had a number of set backs. One of the tumors in her brain grew so much that it caused her to have a seizure while she was driving. She lost the use of her left arm. And then the DMV revoked her license. This beautiful mother of 4, ages 3 to 11, was then relegated to having friends and family taxi her and her kids around to their various activities and appointments. She regained the use of her arm, but never got to drive again. She started holistic treatment, alternative treatment in other countries, went on a religious pilgrimage to Lourdes, France. She did everything within her power to fight this insidious disease. And this beautiful, courageous young woman did it all with a smile, with grace, with unwavering faith in God, and total acceptance. She never said “Why me?” but rather, “Why not me?”. And then in July one of the tumors on her spine caused her to become paralyzed from the waist down. She underwent a brutal series of radiation treatments to shrink the tumor, but it didn’t work. She went home and then her chest cavity started to fill up with fluid. She underwent surgery to drain the fluid, put abrasions on the cavity wall, and place talcum powder to prevent the fluid from returning. She said it was the most painful thing she had gone through so far. That surgery was unsuccessful and they had to do the most painful thing she had gone through so far—again. Finally, at the end of August, Marilyn made the decision to stop any further treatment. Her doctors felt that all possibilities had been exhausted. She decided that she wanted to focus her attention on being at home with her family, enjoying the remainder of her days, surrounded by loved ones. Hospice care was called in and put in place.

In 2009 I walked again. This time with 3 other girls—one was a former roommate of mine, Hilary, whom I had worked with along with Marilyn at a home for abused children. Hilary had also gone to college with Marilyn. The other two girls were friends of Hilary’s, Dana and Kelly. This walk was different from the very beginning. I walked with a heavy heart. I walked without Marilyn. There was one similarity to the first walk. No, it wasn’t diarrhea. I adopted Kathy’s walking schedule. We skipped lunch, we stopped only to fill our water bottles and to grab snacks, and we kept a pretty brisk pace. We chatted and laughed and walked our 26 point something miles…but somewhere along the way, Dana started acting funny. She stared giggling for no reason. Then she would stop and get really cranky. People driving by would honk and yell stuff like, “Keep going! You’re almost there!” and she would yell back, “Shut up (choice name) you’re in a car!” Now, granted, her feet were covered with blisters, but she was acting a little crazy. (On a side note, at all of the rest stops there are sandwich boards with signs of dehydration and heat exhaustion posted on them. Dana’s behavior fit a number of these signs, but she insisted that her feet hurt, she was drinking enough, and she just wanted to get to the camp ground…and so we pressed on, girls behaving badly and all.) With a little over two miles to the end of Day 1 we came upon a fellow walker who had collapsed. Some other walkers were calling the emergency number on our wristbands to get her some help. We should have known something was up when Dana just stepped over her and kept walking. Finally around 3:30 we reached the Day 1 finish line. We stopped at a tent to get our feet massaged and our backs massaged. We were doing OK, but Dana and Hilary had blisters—really bad blisters, so we went to the medical tent. They put their names on a list to have an RN tend to their blisters. When they called Dana, she went to the nurse and sat down. Then we saw her stand up and start to stagger around like a drunken sailor, to the tent exit, where she stared to projectile vomit. The medical staff helped her back in and put her on a cot. For the next 15 minutes, she vomited. The paramedics had been called in for another walker, but when they saw Dana, they went to her first. By that time she had been given an IV. (Yikes!) She was severely dehydrated. (Wait! What about all that water and Gatorade she insisted she had been drinking? Maybe she just thought she drank it—who knows?) She tried to convince the paramedics and medical staff and me and Hilary and Kelly that she was OK and could just rest for a few minutes and be fine. She had everyone convinced, but then she tried to stand up and started vomiting again. That’s when we insisted that she had to go to the hospital. Kelly went with her. Hilary and I went to the dinner tent. My husband and my mom brought my girls to visit me. Appropriately enough, I spent the entire visit nursing Marlo while Joy ate my dinner. (She was really hungry.) We walked them to the car and kissed everyone good-bye and had just enough time to walk across the 5 mile campground to catch the last shuttle bus to our hotel. Yes, hotel. I camped once, no need to do it again. Didn’t you read about 2007? I needed a real bathroom, with lights. Actually I just needed an electrical outlet because I had to pump breast milk for Marlo. The bus was an hour late, of course, but worth it when we were in the comfort of our hotel room, having taken hot showers and lying in a soft, comfy bed. Kelly was already there. She had showered and ordered room service and was watching TV. Dana was at the hospital for 3 hours. Her husband (get this), a paramedic, had to pick her up and take her home. Our group was now down to three. Kelly greeted us at the door and said, “I don’t think I am going to walk tomorrow.” (She has a charming English accent, so you want to agree with almost anything she says.) We tried to convince her to just do it, but she was out of walk mode. I went in to take my shower and I noticed that she had cut her wristband off—and they won’t let you walk without it. So now our group was down to two.

Hilary and I got up at 4:30 the next morning, took the shuttle to the campground, ate our breakfast, patched up her blisters, and started our 13 mile walk to the finish. She was a trooper! Her feet were covered with blisters. She stopped every 3 or 4 miles to apply moleskin, but she walked. At the lunch stop one of Marilyn’s friends met up with us. She took pictures and a video to show to Marilyn. It was very emotional. We were very proud of ourselves for toughing it out. (Incidentally, I did not get any blisters. In fact, I wasn’t even that sore. I don’t have time for being sore, I have two kids. And I just simply don’t believe in blisters. Hilary, Dana, Kelly and about 20 other Keepin’ the Faith team members would like to hurt me for this, but it is what it is.) I had to walk to the hotel from the finish line because I wanted to skip closing ceremonies. That was another 4 mile walk. When I got home, my husband told me that we were going to the neighbors for a barbeque. He thought it would be nice for me not to have to make dinner. (But he did offer to bring homemade cookies. Guess who made them?)

After 2 ½ walks under my belt I was feeling very conflicted. I guess the exhaustion of it all was weighing on me. I hadn’t expected Marilyn to last that long, but she was hangin’ tough. She was down to about 80 pounds and in extreme pain, but she held on for her son’s birthday, her baby’s first soccer game (which she actually attended), she got a tattoo with a pink ribbon and hearts colored the colors of her kids’ and husband’s birthstones, her 39th birthday, her husband’s birthday…she was OK with dying, but anxious about how her kids and husband would fare without her. And so my very lame solution was to leave my Avon Walk for Breast Cancer wristband on, as a reminder of the pain that Marilyn was dealing with daily…I know that’s kinda gross, but I wasn’t ready to cut it off. Then, on October 12th, exactly one month later, I was playing with Marlo and she reached over and pulled on it. It was so brittle from 30 showers and daily wear that it just fell off. On that cloudy, rainy afternoon, I received the message that Marilyn passed away.

And so, let us all remember that life is precious. Love every minute. Every day goes by so fast and there are no guarantees for tomorrow, or even your next breath. Hold your loved ones close. Walk with a friend who is in need. Believe in a cause. Hope. And be inspired by those who fight courageously, to the very end, and learn from them. A journey of a thousand miles starts with a single step…make your journey meaningful.

Posted by The Editor for Busy Body

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