One of the original goals of our trip was to celebrate Gab's sixteen years in remission from Hodgkins Disease and to show people that a healthy and happy life after cancer is very possible. Emails from fellow survivors and families of individuals who are currently undergoing cancer treatment tell us that we are on the right track. But perhaps we could talk a bit more about this aspect of our journey.
This page will do just that. We are dusting off this space to use for some, for lack of better words, cancer-specific stuff: Advocacy, news about research, meeting other survivors, and other things that might be of particular interest for those of us who have had run-ins with the "C word" (as Gab's cousin Don likes to call it).
What do you think? As always, we welcome your thoughts and comments at firstname.lastname@example.org.
It's that time of year again! Those shivering students holding cans and containers at corners and intersections across Pennsylvania aren't passing the hat for party funds; they are "canning" for the Penn State Dance Marathon in support of the Four Diamonds Foundation.
Give them a hand and drop a few bucks in the pot. Your contribution might help them surpass last year's donation of over $4 million dollars to Four Diamonds. You can find out more about the largest student-run charity event in the world at www.thon.org.
The 2005 Penn State Dance Marathon raised a total of $4,122,483.65 for the Four Diamonds Fund! Go to www.thon.org for news and information from this year's THON and ways you can help prepare for THON 2006.
Think of a place you want to be, more than any other place in the world.
Donít think too hard. What is the first place that comes to your mind? For me, the choice is easy. The beach. A beach. Any beach with white sand, black sand, seaweed-strewn shores, frigid whiteĖcapped waves, or warm ripples of water. Preferably the ocean, but in a pinch a lakeshore will do. This is where I need to be.
We are on South Padre Island, just off the gulf coast of Texas, a place infamous for its wild and crazy Spring Breaks. Today, itís just me, some Winter Texans who are settling into their seasonal condos and an occasional family. We all know the beauty of a beach town off-season and have come down to the water this afternoon to enjoy it together. Michael is in the motel room, choosing college football on TV over sandy hair and soggy clothes. The beach isnít for everyone. Actually, I think he knows how much it is for me and has decided to let me savor it alone.
I canít explain the magic the seashore holds for me. I can tell you that when all else failed, conjuring the sights and sounds of the ocean relieved the sickness that no traditional medicine could.
Like most people receiving chemotherapy, I suffered from nausea and vomiting that would take me out of commission for days after a session. The day of my first treatment, we found out the hard way that I was allergic to the anti-nausea drug usually administered to kids. In subsequent treatments, my parents and doctors tried using other meds, wristbands touted to prevent motion sickness, special teas - you name it. I was a guinea pig and I didnít mind. Anything to stop the sickness.
When it seemed as if we had tried everything, my Child Life Specialist Trudy suggested self-hypnosis. Fine. Whatever it takes. I went into the experiment willing, but not too convinced.
We found an unused room at the clinic, dimmed the lights and then Trudy said to me:
ďThink of a place you want to be, more than any other place in the world.Ē
So I did. I closed my eyes and let her quietly talk to me. I wasnít really in Hershey, PA. I was on my raft, not far from shore, letting the waves pick me up and set me down, the sun making my eyelids warm and the water making my skin sticky. Before I knew it, the nurse was taking out my IV and mom was going to get the car. What?! Not only did I not get sick during treatment, but I made it the entire car ride home, well almost, before the first wave of sickness broke through.
Now this is where it gets cool. The next week, we tried something a little different. Before we found a quiet place, I was connected to a biofeedback device. This little machine measured my heart rate and body temperature. We had used it before with the other (failed) anti-nausea experiments. With the wristbands, my mom and nurse actually knew when I would get sick before I did by watching the readings on the monitor. Novel, I suppose. This time, we would see how well the self-hypnosis worked.
Like a charm. This time, I could see for myself that I had power over my bodily functions. I was in control, not the chemo. A little bit of empowerment goes a long way. I made it home that week and if I remember correctly, I think I even went to school the next day.
According to a research article on the American Cancer Society website, Self-hypnosis can be especially successful with children and adolescents. Progressive muscle relaxation, biofeedback, and guided imagery can help patients of all ages .Of course, I didnít know that at the time. I was just thankful it helped me.
So today, Iím walking alone in my happy place, smiling and having conversations with myself. Every sense confirms my affection. The heat making my day pack cling to my back; the sight of gulls, terns and pelicans swooping and gliding through the haze; the scent of salt mixed with sunscreen and my own sweat; the constant yet arrhythmic crash of waves and the feel of the tiny shells, each with a pinpoint hole in them, that Iíve been collecting as I rub them between my fingers. This place is real and wonderful and for as many things as I have seen and done, I never feel as alive as I do at the beach.
I am a cancer survivor. I know that at least one out of ten Americans can (fortunately or unfortunately depending on how you look at it) can say the same thing. I donít think I am anything special. I donít necessarily feel good when people say that I ďbeatĒ or ďconqueredĒ the disease because to me that implies that all of my friends who didnít somehow fell short, or maybe didnít fight as hard as they could. I know thatís not the case.
Having cancer has shaped who I am. It is a part of my identity. But it is not My Identity. There are people that have known me for years that had (have?) no idea that I was once really sick. Itís not that I avoided the issue. I just never thought to mention it.
There are times when I am reminded, sometimes gently, sometimes like a punch to the gut, that being in remission from cancer does make you different. One of those times was climbing the Inca Trail to Macchu Picchu where oxygen is already scarce because of the high altitude. Scar tissue over my lungs and diminished lung capacity, two leftovers from cancer days, combined with the physical exertion to make me feel like I was going to die. Seriously die. Thank God for my patient husband who climbed ľ mile back down the trail to retrieve the blubbering, shuffling mess that I let myself become.
That entire day I was feeling sorry for myself, constantly reminding myself that I had serious disadvantages over the rest of the people on the trail. That may or may not have been true. I used my cancer as a crutch and clearly it wasnít a very good one because it didnít get me very far. Michaelís perfect walking stick ô would have worked much better.
That was four years ago. I am much stronger, physically and mentally now. I know that there is probably nothing I will do that will be more physically challenging than the Inca Trail. It is my benchmark. As in, ďIs this as hard as the Inca Trail? No? Then keep moving!Ē Thatís my toughy inner voice, which shares space with my not-so-tough inner voice and the virtual jukebox in my head when I hike.
My not-so-tough voice was getting ready to note her objections to the switchbacks that steadily lead the way up to Indian Gardens, our next camp, when I had to step aside and make way for a mule train that was coming down the trail. I glanced up from my boot-gazing stance to say hello and found myself looking at at least twenty women wearing Race for the Cure t-shirts astride the mules. Some had short spiky hair. Are you a survivor?? I couldnít help wondering. Are you a survivor? My heart started racing. Because I am a survivor, too! Hey! Iím a survivor!! I was so excited I think I was trembling. I kept smiling and trying to speak but I couldnít. The words were caught in my throat. I am a survivor, too!!!
The mule train passed, probably wondering what the heck was wrong with this teary mute on the side of the trail, and I continued on my way. As usual, Michael was distances ahead of me. I was alone with my thoughts, which were no longer mundane. I felt alive, elated, proud of myself, proud of those women. I felt grateful. I felt thankful. My steps had new purpose. I am hiking the Grand Canyon. I can hike the Grand Canyon. I am a survivor! Darn it if that darn Destinyís Child song wasnít stuck on continuous loop on Gabbyís virtual jukebox.
I made it to camp in record time. I donít think I stopped once. Michael was shocked and amazed. He had barely put down his pack and filled his water bottle when I turned the corner. I didnít need him to come to my rescue this time. I did it on my own. My cancer wasnít my crutch; it was my motivation and my reason. I donít think I am anything special for being a cancer survivor, but boy do I feel lucky.
August 4, 2004 Four Diamonds Summer Newsletter
Gab and the C2C trip get front page on the Summer edition of the Four Diamonds newsletter! This totally freaked out her brother, who wasn't expecting to open the mailbox and see his sister's face staring back at him. Sorry about that, Chris.
Ben Franklin, Edgar Allan Poe and Thaddeus Kosciuszko were to be the focus of this morning's destinations. But the real highlights occurred on an evening trip to Villanova to see Tori Maley, a dear friend and fellow survivor and on the corners of 9th and Passyunk at Geno's and Pat's venerable cheesesteak institutions.
Tori Maley and her twin sister Stasia looked as beautiful as ever. Tori even more so since the last time I saw her she was recovering from a pretty intense surgery and still undergoing cancer treatment. I was Tori's counselor at Camp-Can-Do the summer of 1996 and since Tori was a little under the weather that first year, I had the privilege of being her personal chauffer around the campgrounds. Me, Tori and the golf cart managed to get ourselves into plenty of predicaments, mostly, ok, entirely, due to my poor driving skills. To this day, I am really very thankful that the American Cancer Society hasn't sent me a bill. Tori celebrated six years in remission last week and was proudly modeling a Relay For Life t-shirt when we saw her. I Am Winning was her motto ironed on the back. Today's entry is dedicated to her and her family. Read entire story.
March 4, 2004 Great Day
When does 3 hours in a waiting room at a pediatric hospital clinic turn into a great day? When those three hours are spent getting hugs from social workers, nurses and doctors and result in the following sentence:
"You are in tip top shape to go on a two year adventure."
I asked Dr. Neely to put that in writing in case my mom had any doubts.
While I was at the Hershey Medical Center getting my final stamp of approval, I learned about some of the new innovations and techniques utilized by the Pediatric Oncology Clinic that are making cancer detection and treatment a little more bearable for kids and their families. One of those is active sedation, which allows children to be safely sedated while receiving chemotherapy or undergoing painful procedures like bone marrow aspirations or spinal taps. A slight amnesiac is administered with the sedation so that when the sedative wears off, the child barely remembers the events, which used to be equally dreaded by the children, their parents and the hospital staff who had to administer them. Nausea, vomiting, sickness for days - common side effects for most chemotherapy drugs - are hardly an issue thanks to new medicines.
When the medical student examined me before my doctor arrived, she was amazed at the long scar on my stomach (a crooked scar thanks to another medical student). This was the result of a spleenectomy and organ biopsy that was done before I started treatment to assess the extent of the Hodgkins - once again, a process replaced by advanced X-rays and scans that isn't even taught these days. In fact, in the rare case when a spleen does need removed, they can do it using laparoscopic surgery, leaving minute scars and much less time needed to recuperate. How cool is that?
I felt totally anachronistic, like a relic from a past age. And it felt great.
When people talk about the importance of cancer research, this is what they're talking about. And of course, the Four Diamonds Foundation is there to make it accessible to everyone who needs it. I spent some time with Sara Firestone, the Coordinator for Four Diamonds and she filled me in on some of the exciting things that the foundation is working on, including a much needed health and wellness clinic for long-term childhood cancer survivors. Did you know that The Penn State Dance Marathon (THON) raised over $3 million dollars for Four Diamonds for the third year in a row? Did you know that Four Diamonds is able to support twelve staff members including oncologists, nurse specialists, social workers, child life specialists, a clinical nutritionist, a clinical psychologist, and a music therapist? Four Diamonds has been in existence for over three decades and has never had to turn down a family in need.
February 12, 2004  Four Diamonds
President George W. Bush paid a visit to the midstate today, speaking at a local high school within walking distance from Gab's parent's house. The highlight of President Bush's visit for us was his recognition of a young woman who volunteers for, among other things, the Four Diamonds Foundation, which happens to be a local charity very near and dear to our hearts.
Charles and Irma Millard established The Four Diamonds Fund in 1972 after the death of their son, Christopher, who was diagnosed with cancer at the age of 11. The Four Diamonds Fund is named after a story that Christopher Millard wrote shortly before he lost his battle with cancer at the age of 14. In Chris' story, a knight must find the four diamonds of Courage, Wisdom, Honesty and Strength in order to be released from captivity by an evil sorceress. The four diamonds are symbolic of the traits Chris believed were necessary to overcome cancer.
I never had the opportunity to meet Chris, but Mr. and Mrs. Mallard and wonderful people who have stayed true to Chris' vision. I honestly don't know what my family would have done without Four Diamonds.
The Four Diamonds Penn State Dance Marathon is just a week away. Besides being the largest student-run fundraiser in the United States, Thon raises over a million dollars for Four Diamonds annually - last year topping $3 million. If you see any shivering Penn State students "canning" on your street corner this week, please consider adding your dollar to the can.
Back to Bush: Although he was here to promote his "No Child Left Behind" policy, less than 300 students were hand picked by their teachers to attend the event, leaving hundreds of students left behind, probably watching via monitors in their homerooms and cafeteria.
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