"I'm Too Young for This!" Founder Matthew Zachary for "I'm Still Beautiful 2009"

"I'm Too Young for This!" founder Matthew Zachary talks about i2y and why you should come to I'm Still Beautiful this Thursday!

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Megan's Story

Eleven months ago, I was a 22-year-old newlywed with a plan. My husband and best friend, Peter, and I were married on August 2, 2008. We spent the first three months of our marriage imagining the wonderful life we would have together. I was pursuing my dream of becoming a speech pathologist at the University of Nebraska-Lincoln--once my studies were complete, my husband and I would move to move to Fort Wayne, Indiana where he would begin studies to be a Lutheran pastor.

A few days after my husband and I took our first trip to Illinois after our wedding, I started experiencing jaundice and felt fatigued. At first doctors thought I was having an allergic reaction to medication, but after bloodwork, an ultrasound of my abdomen, and a CT scan (all of which happened within a few hours), I was told that there was a large mass in my liver that might be cancer. My heart sank, and I recalled a sick feeling I had the night before that there was something seriously wrong with me.

After several more tests and doctors’ visits I was diagnosed with metastatic cholangiocarcinoma (bile duct cancer)--a disease which almost always affects people at least 2 or 3 times my age. Because of the advanced nature of my cancer, I was told that surgery would not be an option.

Almost immediately after my diagnosis, my husband and I moved into my parents' home to be close to Chicago's medical facilities and to our families. I started chemotherapy (a regimen of 2 weeks of Gemzar and Xeloda
followed by a week of rest), and, thanks to God, my tumors began shrinking (they’re now stable, which is certainly preferable to growing). My worst side effects from chemotherapy include fatigue, flu-like symptoms, a puffy face, and peeling feet, but the drugs have not caused me to lose my hair. Throughout the past 11 months of chemotherapy, I have learned what to expect on each day of the cycle, and I can plan my activities around my good days. I’ve had my share of bad days, but I choose to let the good days outweigh the bad.

My family and I have had moments of extreme hope followed by moments of extreme despair. I’ve had several surgeries (2 of which were attempted, but unsuccessful, resections of my primary tumor), lost both my ovaries and my gallbladder, and spent much of my time in doctor’s offices, emergency rooms, and hospitals. However, this fall my husband and I decided that we couldn’t live our life tied to the chemo chair, frozen by the fear of what might happen next. We modified our plans, found a doctor in Fort Wayne, IN, and moved so that Peter could attend Concordia Theological Seminary. So far, God has blessed us with a lot of love and support from family and friends, and we're looking forward to growing and learning during this next chapter of our lives.

Now I am a 23-year-old approaching the one-year anniversary of my diagnosis. My plans may have changed, but I am living on God's timeline, not anybody else's. I realize that I am fortunate to be doing as well as I am. More importantly, I am extremely blessed to be able to share my belief in miracles with others as well as the peace and comfort that comes with God's love.

Christy's Story

My greatest life challenge to date occurred while on vacation a few years ago. I was alone in a Florida hospital, 2300 miles from my home in Idaho, and still groggy from colonoscopy anesthesia. A nurse wheeled me in to receive the results from a man who had just become my gastroenterologist. He began by saying, “Is there anyone nearby that you can call?” The reply was in my expression and with that, he sat down in front of me and said, ”Well, It’s not good. We found a tumor. A tumor so large we couldn’t get through to scope the rest of the colon. “ He went on to explain that it was cancer. The moment he said the word I laughed it off and said, “Of course it is.”

Moments later, as the nurse rolled me to my room I slumped down in the wheelchair and began to sob. Preparations were being made for emergency surgery. My colon was in danger of rupturing. The tumor had already grown through a wall of the colon and later it was determined, into the lymph nodes.

That night, I climbed into the hospital bed that was to be my home for the next ten days. My mind reeled. Could I really have cancer? How could I have cancer? I’m only 31 years old. Why did I have cancer? Next came a flood of emotion as I reflected on the not so distant memories of my birth father and his battle with cancer. It had only been five years since brain cancer took his life at the age of 53. At diagnosis he was given three months to live. He endured two brain surgeries, physical therapy, and round after round of radiation and chemotherapy. A year and a half later, when one brain tumor had become three, his body succumbed to the disease. I was there. What I knew of cancer was what I saw take my father. What I saw take my father was excruciating. Now I had my own battle with cancer to face.

A surgeon was able to remove my tumor, a foot and ½ of the colon, & the lymph node system with success. With six weeks of recovery time, I found myself ready to take on seven month long chemotherapy treatments. It was during recovery that the consideration to stay in the South to undergo treatment began. My home in Idaho was in the Teton Mountains, where winter temperatures can dip well below zero for long periods of time. This would not work well for my fingers and toes dealing with chemotherapy side effects such as neuropathy. Not to mention the stressful hours of commuting through ice and snow for treatment. So in the south I stayed. This was a terribly difficult decision considering the fact that I owned and operated a busy restaurant in Idaho and had planned to be gone for only one week. So, after a roller coaster ride of preparations, I settled in the Franklin, Tennessee area with my adopted family and finished treatment at Tennessee Oncology in the spring of 07.

Finally, I traveled to M.D. Anderson for extensive testing, where I was given the “all clear’” release from my oncologist. Oh what a liberating day! It was, to say the least, a very emotional experience. My thoughts returned immediately to my birth father. He’d spent months at M.D. Anderson not so terribly long ago. Now I had a deeper understanding of what he’d been through. In his memory, and in celebration of the new victory, I decided to pay a visit to his favorite outdoor place to rest during treatment. What I found brought me to tears. Where once stood only a concrete wall, was now a beautiful rose garden. It was just what he would have loved. This provided the perfect place, the perfect time to reflect and let go of the tears.

In departure, my wonderful doctor’s last bit of advice was to keep my stress level down. I told him that would actually be tough to do because I owned a restaurant. I owned a restaurant and had a lot of work to catch up. He said, “Well, do what you need to do.” So I returned from my nine month ‘vacation’ and decided to sell my restaurant, my home, and move back to the hills of Tennessee. I’d fallen in love with Tennessee during treatment and knew this was where I needed to be for healing. First, I had a lot of work to do in Idaho. Seven months later, November 2007, I turned over the restaurant keys to the new owner and moved from the Rocky Mountains to a hollow in Tennessee, just south of Leipers Fork.

Last month I moved into Nashville to pursue massage therapy and become more involved in outreach for the community. I feel so blessed and strengthened by my journey with cancer. Life has taken on a whole new meaning. I hope to continue as a source of support for others who are touched by this disease or other adversities.

October 22nd...

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Kay's Story

In May of 2008 I was diagnosed with a re-growth of brain tumour. I could write down the medical terminology but the words would probably take up the entire page. All you need to know is that I had a tumour in my brain towards the back. I had been diagnosed with a brain tumour not less than a year before in August of 2007. I had this headache constantly for about a month, but I thought that it would just go away. One night I went into work and couldn't lift my chin up off my chest. At that point I thought to myself 'This isn't right', and went to a hospital here in Nashville. I told them about what was happening to me, how I felt, and the fact that when I was five I had my first brain tumour! Knowing my history they rushed me straight upstairs and gave me CT scan. After, a doctor told me they had found something but didn't know what it was, and that they would like to do an MRI scan and have a specialist take a look at me. They found it to be a tumour, probably a re-growth of the one I had operated on when I was five. I remember when they told me I was more scared of phoning my mom and telling her. She remembers everything from the first one and I didn't want to put her through that again. I opted to go back to England, where my mother is and where healthcare is free. Just those three days in hospital, the two scans, and the specialist came to just over six thousand dollars! And I can't get health insurance as I have a pre-existing condition, so I don't qualify.

So, there was a big hold put on my life I was 24 and, not to discriminate against any other age, but time lost in your mid-twenties seems like forever. You are still trying to build a life for yourself. After four months, two operations, many weeks in hospital, a bout with meningitis and a whole galaxy of drugs (setriods being by far the worst becuase they make you really fat!) I came back to Nashville, thinking that all of my bad luck was behind me. I mean I've had pretty much the same thing twice now and I was still only 24, surely it can't happen again, right?

Wrong.

One of the stipulations put on me by my neurosurgeon was that I had to have an MRI every six months here in the US and send the images over to her. When I got back, I admit, getting a scan was not at the top of my list of priorities. I felt fine, I thought I was fine, and I had a lot of stuff to catch up on in trying to build my life again. After a few times of my mother telling me to go and get it done, I did. I sent it off and thought no more about it.

Then in May of 2008 my mom phoned me from England, she sounded nervous, almost frightened. She told me that it had grown back. It was more aggressive than before and there was a chance that it had become cancer. I was on my cell phone in the middle of a busy street and I started crying...But something somewhere in me wasn't surprised and almost expected that call. I put off for as long as I could not going back to have the operation. I wanted to have a summer here, I wanted to have the 4th of July here. I knew that the more times they operate on a place the lower the chances of surviving are, so it could be my last summer. I even considered not having the surgery and letting myself die. I knew that after the surgery it would be rough and if it could happen again now, perhaps it could happen again in the future and I didn't want to be at the whim of an illness. But eventually I decided to give it a try. I went back to England on the 5th of July 2008, went into hospital on the 8th and had the operation on the10th of July. I remember going into the prep room before surgery, never once have I actually been scared in all the operations I've had. I look at it this way; firstly I will be asleep, secondly me being afraid helps no one and may end up doing me more damage, and third it's in the hands of the surgeons now, there is nothing I can do.

The night before I went down to surgery I had my last cigarette. After the surgery I was in hospital for a couple of months. Again I got meningitis, again I couldn't see properly, again I had problems with my speech, and again I was forgetting everything that happened around me even things I had just said. After a few weeks I was called to go and see the Oncologist. They had done a biopsy of the tumour which thay had removed, and it was cancerous. A detailled plan of what they intended to do was laid down in front of me, radiotherapy, chemotherapy etc...It would take about a year. I fell silent and I don't think I spoke for a few days. It wasn't the fact I had cancer, it wasn't the fact that I had to have all this treatment and it wasn't the fact that I knew all of this would actually make me feel worse. It was the fact that I would lose so much time. I was 25 and everything that I had had was now gone. Over the course of the next couple of months I had to let go of my apartment in Nashville, I wasn't going to come back to the job I had there. I trained as a dancer, I can't do that any more. I wouldn't see alot of my friends again. I couldn't imagine anything worse.

The radio therapy started. To stop your head from moving around they make a plaster cast of your mouth, like when you are fitted with a pallet brace. They then make this into something which fixes your mouth to a head brace, which is fixed to a bed. The only problem is I couldn't lie down on the back of my head as I had a huge sack of brain fluid that had not drained. When it was pressed this would give me terrible headaches. They had to figure out a contraption for that too. Radiotherapy was horrible. It was uncomfortable, it was everyday for six weeks, it made you really tired and sick and it made me lose my hair where the laser was directed. I had a reverse mohawk going on. I was bald down the middle of my head with hair on the outside. Like so many other people losing my hair was the most shocking thing to happen. I prised my hair. I used to have long thick dark locks that fell into ringlets. I loved my hair, I was like Samson.

Then came chemotherapy which was a largely experimental drug called Tramozolomide. It lasted for six months and it was awful. It didn't make me go bald though, but it did make me sick and tired all the time.

I had a LP shunt fitted into my spine (actually a second one as I had one fitted after the previous brain tumour but it no longer worked), this was supposed to help drain the brain fluid that had built up at the back of my head. I had it put in in December of 2008. It was horrible. I was extremely sick because it was draining too much and I couldn't stand or else I would get pressure headaches, really dizzy and fall over. I should've stayed in hospital, but I didn't want to be there and it was Christmas...On New Years Eve I was taken by ambulance back to hospital to have an emergancy operation to remove the shunt. I could stand after that. What a great feeling to be able to walk, stand or even sit up. Believe me I won't ever take it for granted again.

Eventually everything came to an end and I am back in Nashville again. This type of tumour can grow back again so I have to have MRIs every six months and go back to the cancer hospital in

England every year. It has taken a long time, the first (or really the second, but the first I remember) was diagnosed when I was 24...I'm now 27 and it's still not completely over. I carry the scars and the memories of the last two and a half years with me. It is really hard to try to rebuild your life, especially when you have lost so much time. But I am not bitter, not in the slightest. Having cancer made me a much better person, I used to smoke and drink...I no longer do either.
There are so many other stories that I have as a part of this, so many experiences that come out of this, if I was to write them all it would turn into a book. But maybe one day, hopefully, we'll get to meet, have a coffee and a good chat. You could tell me your stories and I can tell you some more of mine. I would like that.

Take care,

k

Brett McLaughlin booked for ISB 2009!!

Hey Guys,

We are happy to announce that Brett McLaughlin has been added to our stellar musical line-up for the event this year.

Check out his tunes at http://www.myspace.com/brettmclaughlinmusic and also to get more info.

Love,

The ISB Crew