October 22nd...

Let us know if you'll be at I'm Still Beautiful '09 at our facebook event!

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

2009 Event Poster

My Story - Erin G. Pianko

On Tuesday, November 11, 2008, I heard the words, “You have breast cancer.” This is after I had been to different doctors countless times always being dismissed. I was 31 years old and always very healthy. I had low cholesterol! I had never smoked a cigarette! I exercised five days a week! My doctor once said he had never seen better blood work on a human being. My blood work still has no tumor markers for breast cancer. The doctors played the odds game on me and lost.

And with that, my story begins the second week of June 2008. Like many women before me, I found a small lump in my breast. I had my annual exam scheduled and of course, told my obgyn. “Perfectly normal, women who are right handed have lumpier breasts on their right sides,” she said. I had no idea doctors’ didn’t know what cancer feels like. I was really naive. I went away feeling relieved and proceeded to go on a much needed vacation. While on vacation I began suffering from severe stomach discomfort. After a horrible week in the hospital I was diagnosed with a pancreatic lymphangioma. I had a very rare grapefruit sized benign tumor strategically placed between my pancreas and my small intestine. Of course it wasn’t cancer. People in my family don’t get cancer. We are immune. Only, I did have cancer and no one could tell. Months of healing passed and I still was feeling strange. I visited my family doctor and told her about my symptoms and the lump in my right breast, which was still prominent. She too, told me not to worry and that I was feeling ill because of my major abdominal surgery.

At this point the story takes another turn. I decided to go back to my obgyn to again show her the lump in my right breast. It had gotten worse and was painful to the touch. As I left she said the words, “Don’t worry, I still don’t think it is cancer.”

Two years earlier I was a girl who had just gone through a painful divorce. After that time the only thing on my mind was to become a mother. Before this mammogram I was the happiest I had ever been in my life. I met the love of my life Adam, and felt, finally things were looking up. In October 2008 we decided to try to get pregnant. I thought it would take a long time! Since I was going in for a mammogram, just in case, I should take a pregnancy test. Four tests later, they were all positive.

How do I get a mammogram if I am pregnant? I called radiology and asked that question. They told me to re-schedule. I didn’t. I insisted on at least getting an ultra-sound to rule out any malignancies. After the ultra-sound I was sitting in a waiting room in a pink paper half shirt barely covering my breasts, with women double my age. The nurse announces my name asking if I would see the doctor. At this point, the doctor proceeds to tell me that he doesn’t care if I could be pregnant. “Sign here and here and we are not responsible for what happens,” he said. What a lonely time. I assumed that medical professionals who work as cancer detectors are prepared to inform someone they may have cancer. What a wrong assumption! I didn’t get that courtesy. I had to assume the worst, based on how they were acting. I had to assume the worst alone. After the mammogram, I went back to the waiting room. A half an hour later the nurse came in and told me to leave and follow up with my doctor. This was a Friday afternoon. They wanted me to wait the entire weekend? I had just seen many women come in, get dressed looking relieved. They got their results. At this office they apparently only give good news.

On Monday morning, without an appointment Adam and I drove to the doctor’s office and waited for the door to open at 8am. We were asked to return at 9am and once we arrived back through the doors we were quickly escorted to the doctor’s private office. My mammogram was suspicious of a malignancy and a biopsy was scheduled for the next day. The waiting game continued. On Wednesday I had an appointment with a surgeon to discuss my biopsy results. Wednesday came in a blur and Adam and I soon found ourselves waiting in the examination room at the surgeon’s office. We waited in the room for one hour. This is a room with no windows and one door, waiting for what seemed like an eternity. It was the longest hour of my life. When the surgeon finally appeared, he was shocked that I had not already heard my results. He too, didn’t want to say the words, “You have cancer.” Believe me, I guessed, it was still a shock but not a surprise. At that point, I wanted to know the truth and a plan. Since I was pregnant it definitely made treatment much more difficult. The first step was to try and stage my cancer. Since my tumor was 2cm, the doctors’ seemed confident that I might be able to continue with my pregnancy. An appointment was made to visit an oncologist a high risk pregnancy doctor and scans were scheduled to verify that the cancer had not spread.

The meeting with the high risk pregnancy doctor was scheduled before the results of my scans had been given to my oncologist. The meeting went very well and I was optimistic that we could do it. That was until she opened my file that was shared between hospitals. “Brain fine, CAT scan clear, wait, there is something in the spine”, she said. I heard I had stage 4 cancer from a high risk pregnancy doctor. Everything we had just discussed, all of my hopes and dreams, went out the window with one look at the computer screen. Immediate chemotherapy was required. We directly met with the oncologist and tried to wrap our heads around what the next few months would entail. Keeping the pregnancy would risk my life severely and because I was pregnant I could not harvest eggs to create an embryo. The high dose chemo would certainly put me in early menopause and could damage the remaining eggs. It was the worst case fertility nightmare. All of this happened in the span of five hours. The oncologist thought it would be wise if I spoke to a counselor.

When the counselor came in the room and started asking me questions. She was shocked that I wasn’t hysterical. She said if I didn’t have a severe breakdown in a week, she would be worried. It was at that moment I decided to get on a plane and go to a different hospital. I don’t need emotional breakdowns to be ok. I wasn’t going to be ok with or without a breakdown and I definitely didn’t need a random person who had never been given a diagnosis telling me how I should act and feel. Luckily, because of that move I was able to have a new procedure where they freeze your ovarian tissue with the hopes of putting it back at a time when you are off chemo treatments. This procedure gave me hope at a time when hope was pretty much non-existent.

My day to day life focuses on healing. What can I do to give myself the best change of getting well? Luckily, I am not working. Once a week on Friday Adam and I travel an hour for my chemo treatments, during the week I juice, and do yoga everyday.

I am so lucky to have a wonderful man to stand by my side as I go through the hardest time of my life. I am so thankful, especially after hearing stores of so many survivors who have their lives, but lost their loves during their struggle. We march on!

Fast forward to August 2009! I just have received my first set of good scans. My journey is far from over. But along with my daily cancer fight I am going to Italy and planning a wedding in Spain. I am still living my wonderful life everyday and I am definitely still beautiful!

Erin

Musical addition to ISB 2009: THE MINOR KINGS!!

We on the ISB crew are so excited to announce the addition of The Minor Kings to our incredible musical line-up this year. Below is their bio. For more information or to check out their kickass tunes go to their website (www.TheMinorKings.com).

BIO: The Hall boys, Alex and Ryan, uttered their first words on earth amidst the chaos of father Jimmy Hall's incessant touring with his band, Wet Willie, and other music giants such as Jeff Beck, Gregg Allman, and Hank Williams Jr. But it wasn't until a mutual close friend urged them to form a band while on his death bed that the two brothers began to consider music as a career.

Ryan moved back home and began writing on his upright Baldwin, while abandoning the pre-med program at Vanderbilt. Little brother Alex, whose attraction to the spotlight earned him several impromptu freestyle appearances on stage with his Dad, began sharpening his vocal skills into razorblade melodies. The duo soon recruited high school buddy Chris Smith to be their axe man after hearing stories involving him locking himself into his parent's garage every summer with nothing but a 50's Les Paul, an amp, and a boombox...for real.


The trio traded musical ideas by email as well as chi transmission, and jammed on holiday breaks. Before long, after a little professional seasoning, they had themselves a full roster, a couple of benchwarmers, and a full flock of cheerleaders in some pretty weird places. They are The Minor Kings, and they proudly present to you their unique rendition of rock 'n' roll, righteous and sweet.

Jamie's Story

In early February '08, I was diagnosed with Stage 3, Invasive Ducal Carcinoma Breast Cancer, I was 39 years old. I found a lump while doing a self examination in November '07. Because I live out in the country it took some time to get all the tests that were needed to render the diagnoses. In the end it was the core biopsies that told the story.

I remember waiting in my surgeon's office for the results. It was the longest and scariest 15 minutes of my life. However, I knew, in my heart of hearts, back in November ’07 that I had cancer. But since no one had actually said the words to me...Maybe I could hope and wish it away. No such luck.

After my surgeon used my name and cancer in the same sentence, my life as I knew it changed. Every aspect of what I had come to know to be true and believed in had either come into question or changed completely. The next two weeks went by in a blur. I had so many decisions to make and my brain would not function…it could not process anything.

I had to call my mom and have that conversation you never want to have with your parents, " Mom, I have cancer and it's serious." We cried and she said what every little girl wants to hear when she is scared, "I'll be right there and we'll do this together." That phone call was the beginning of our journey together to kick cancer's ass. My mom left her home and partner in Washington and arrived at my front door 2 days later, prepared to put her life on hold to help me for as long as the journey took.

In February '08 I had what I was told to be a left breast mastectomy (more about that later) with centennial lymph node dissection. The surgeon took a total of 12 lymph nodes, 8 of which contained cancer cells. The last 4 lymph nodes were completely clear. I awoke from the surgery with such a sense of relief, that the cancer was out of my body and could no longer continue to grow and harm me. Many wonderful people came to see me in the hospital to offer their support, prayers and love. I think I called on every single one of them over the course of the next year.

Two weeks after surgery, I was scheduled to start chemotherapy. One small glitch had to be dealt with first. I need to move out of the house I had been sharing with my partner. During this whole process I got to see my partner as person who’s actions I could not live with. So the weekend before chemo my gang showed up to paint the new place and move me in.

On Monday Cheryl, my best friend, took me to my first chemo appt. I was schedule to receive 4 months of High Dose Dense ACT, every 2 weeks. I was scared. I remember when the wheeled in the IV pole that was strung with several bags of chemicals I could not pronounce, that it was real "I had cancer and I had to do this to save my life." Cheryl held my hand and was my strength while I cried over my new realization, She gave me one of the greatest gifts that day, she loved me unconditionally.

I had a very hard time with Chemo. I was almost immediately violently sick and lost 40 pounds off my already shrinking frame in the first 2 months. I had to go to the infusion center almost daily to receive IV hydration and anti-nausea medications in an effort to stay out of the hospital. I remember during one of my chemo treatments having to ask the nurse if it was “ok to puke with all these tubs in me”. It seemed like I was either getting sick or lying on the bathroom floor recovering from being sick. I got shingles, carbuncles, chemo soars in my mouth, all of which delayed and hence prolonged my chemo treatment, I was hospitalized twice and in if losing all my hair was not bad enough, I also lost all my toe nails. I must say that by the time I was done with chemo not only did I feel like the walking wounded, I looked like it too. I had to learn to be gentle with myself during and after chemo. I could not do what I used to be able to do and on some days all I could do was get up. My mom feed me as best she could and cared for me when I could not care for myself. And we made it threw chemo alive!

Radiation was just as hard for me. I had to commute for 1 ½ hours one way to get my treatment. The radiation made me so tired. I experience 2nd and 3rd degree burns all over my left chest and back and I basically slept for 8 weeks. I was so frustrated with still being so sick at this point. I just wanted to be able to stay awake for more than a couple of hours and have a coherent conversation with the people I loved. Both were not possible for me. Again I needed to be gentle with myself and keep believing that one day, I would start to feel better.

After radiation, I went to Stanford to seek advice about my right breast and reconstruction surgery. At Stanford I met 2 wonderful doctors who told me several things. First the surgeon, Dr. Wapnir, informed me that the surgeon who had performed my left mastectomy had left “a lot” of breast tissue behind. Not a good thing with the aggressive – estrogen positive, Stage 3 Invasive Ducal Carcinoma that was found in that breast. I was beside myself. This quake had left milk ducts and breast tissue behind. I wanted to scream and then ring his neck. So, with this new piece of information I scheduled surgery to complete the left mastectomy and perform a prophylactic right mastectomy. Second, the plastics guy, Dr. Lee, let me know in no uncertain terms that he could not do any reconstruction to my left chest until my radiation burns had healed. I was looking at a 6 to 12 month wait. Sigh, I just wanted to be whole again but it was not in the cards I held at that time. So on December 3, 2008 Dr. Wapnir removed my breasts without any reconstructive surgery. She removed over ½ a pound of breast tissue from my left breast. I was shocked and wanted to ring the first surgeons neck again. The pathology reports for each breast came back clean!! Thank God !!! I was so I relieved. The reports from my oncologist also came back clean. For now I was done. God, my mom, my doctors, my friends and loved one and myself had kicked cancer’s ass!!! Now I could get on with the business of healing and rebuilding my life.

February 2, 2009 was my one year anniversary. Over the past year I have started to come to terms with the many, many loses that have punctuated my life over the past year and I have begun to embrace the many, many lessons and insights this journey has given me. Never take today for granted…it just might be your last. Cherish everyone you love, and tell them that you love them daily. Smile if for no other reason then because your are alive. Be good to yourself and others, it heals the body, mind and the soul. Laugh a lot just for laughter’s sake. Remember your loved ones and friends will save your ass when you just can’t save yourself. You are so stronger than you can ever imagine. You back bone is composed of courage, honesty, compassion, determination, and faith. Start walking towards those impossible dreams (that you have held close to your heart) and before you know it you will have achieved some of them. Because I know, if God and I can kick some cancer ass than you can do anything. May God bless each one of us as we stand tall and walk into the next phase of our lives as survivors!