|Donna »||Krista »|
||Hannelie »||Susie »|
|Dorothy »||Hailey »||Sydney »|
|Doug »||Jeff »||
I was 18 diagnosed with a clival. At the same time I also found out I was pregnant with my oldest child. I was just out of high school, a year previously my dad had a stroke by a brain aneurysm, so I was hit hard by the news. I got lucky in finding my neurosurgeon on first task. Of course I got other options but all of them lead back to my original. It seemed like years waiting to have my son, I was nervous and broke down a lot. It eventually set me in depression. But the neurosurgeon and my ob-gyn kept in contact with each other when I had appointments with one of them. Always each one was updated. Of course my son was born healthy. My neurosurgeon was notified and he congratulated me, and informed me to call and get an appointment within the next couple weeks to start the process. As we did I was thankful my son gave me reason to fight and so much love. I had family support all around but a baby made it different. It really was back to back surgeries 6 weeks in between my son and my first surgery and then 6 weeks after my first surgery to my second, but the news when I woke up that they successfully removed the tumor 100%, I cried as I held my baby boy. This year will mark year 12. I still have the same neurosurgeon our visits are short and sweet, he loves seeing the progress of my son and now my two daughters. Not only did he treat me patient-wise he treated me like family and seen and knew I was going through a difficult time and took me under his wing. It has all gave new perspectives.
—Krista’s Uncommon Story
Two years ago I was attending college at EMU in Ypsilanti, Michigan. Sitting in classes became more and more taxing on me and causing horrific pain in my tailbone region. After complaining to my primary care doctor numerous times, she dismissed this pain and did nothing else for me until November of 2019. I had ongoing episodes of high fevers and blood in my urine and in November of 2019 I was sent to a urologist. I am so thankful that finally someone listened to me. The urologist called me the same day to explain to me there was a mass in my tailbone region and I would need an MRI. I wanted to dismiss this, however so thankful I did not. Christmas Eve of 2019 after having my MRI it was finally confirmed that I had a Chordoma sitting on my tailbone and it would need to be removed surgically. I again was a bit apprehensive about what to do but doing nothing would mean the cancer would continue to grow and most likely spread throughout my body. With careful thought and prayers I finally decided to have the tumor removed. I went to University of Michigan in Ann Arbor, Michigan. My team was very straight forward with me. My surgeon was Dr. Sybil Bermain who did a great job of removing the tumor. Although I am still in a lot of pain I am thankful and grateful to my team and amazing doctors and nurses and staff at U of M. Please listen to your body and get a second opinion if you feel any sort of lump in your body. Thankful I can still be here for my only Grandson who I love so very very much.
—Donna’s Uncommon Story
In 2016, I was a champion ultrarunner, yet I was given 3 months to live with a Chordoma tumor wrapped around my brainstem. Our children were 10 & 12. We chose to be really open with our kids and our friends (while keeping some details private) even before we had a treatment plan. We learned to face the fears head on. And we learned how to talk with our children about living and dying. I also had to learn how to ask for help and how to raise money. When I did ask, I was shocked by how many of our friends thanked US. With their urging, I started the Brave over Perfect blog on www.susierinehart.com, which led to a TEDx talk, and a book deal. My memoir, Fierce Joy, came out in 2019. It’s about facing the unknown, plus how we talked to our children, engaged our community, and raised funds. It also talks about healing, rediscovering yourself, and becoming a warrior in a new way. In each section of the book I offer a series of takeaways―lessons learned when life forced me to slow down and step back. I mention the book here in case it could be helpful to you or someone you love. Fierce Joy by Susie Caldwell Rinehart.
—Susie’s Uncommon Story
Good day everybody. My husband, Ampie, was diagnosed in November 2016 with a huge sacral chordoma. That was a shock no-one anticipated, especially him, being very active and healthy. He did not complain of any major pain or discomfort. From time to time during that year though, he did ask me to rub his back with either wintergreen or some sort of ointment for muscle pain.
The first sign we experienced and thought something might be wrong was when he had lost control of his bowel……and that happened in my car…hiehie….and him wearing white chinos. From there-on appointments with our GP, orthopedic surgeon; neurosurgeon; MRI-scans etc., etc. followed like meat stacked on a skewer stick.
Fortunately, we waited about 30 minutes for the radiology report. Once the orthopedic surgeon sat down to discuss the report with us, his eyes swelled up with tears and his first words were “uncle…it is bad it is pretty pretty bad.” According to the radiology report, the tumor was 14 cm in length and 9.8 cm in width.
The tumor developed around his coccyx, S1, L5 and L4 vertebrae. The tumor also caused the loss of his bowel and bladder movement. He had to have an end-colostomy done and is now using a suprapubic catheter.
Due to a misunderstanding between me, one of the service providers, and my medical aid, the original date for the operation had to be postponed to 5/12/2017. In that six months the tumor metastasized to 22 cm in length and 14 cm in diameter.
After about 5 hours in theatre, the anesthesiologist popped out to me telling me that: “they are now turning Ampie around.” By then I knew he will be okay.
After the operation the orthopedic surgeon popped his head around the door having a big smile on his face and looked like a little boy who just received the biggest gift in the world, showing both thumbs up. Hubby’s stay in hospital however, was longer than what we expected. He picked up a bacterial infection. Due to the removal of the Chordoma, coccyx and vertebrae, he also experienced loss of movement and is therefore now wheelchair bound.
Not only did we have to deal with cancer and the chordoma, we had to deal with the loss of his bowel and bladder movement as well. That in itself, was challenging. No one is prepared to deal with one of those challenges, let alone all three of them at once.
Ampie remained positive throughout this period, his faith in God and the good in people never squandered. God had given me “cancer-shoes” to wear (size 13) because I am literally hubby’s feet, and He had sent angels along this road to share their wings with me. The wings of knowledge, wisdom, patience, strength (just enough) and calmness (especially calmness). At times I was so thankful for the calmness God gave to me, because without “calmness,” “strength” would have let me down seriously….lol
—Hannelie’s Uncommon Story
In early 2018, my husband and I bought a swing set for our two young children. In late March 2018, he built a cinderblock platform for it. After that weekend, he never felt right. He was exhausted, going to bed by 8:30, wasn’t eating, and wasn’t interacting with us due to the severity of the fatigue. Ryan developed a terrible headache in the back of his head. About two weeks later, he was in the ER with lactic acidosis. They gave him some fluids and we left with orders to follow-up with an endocrinologist due to an abnormal thyroid test. I scheduled him with the endocrinologist and found a primary care doctor.
We saw both doctors May 3. The endocrinologist wanted more bloodwork drawn the following Tuesday. The primary care doctor thought he was healthy but decided to run a testosterone test. We got the results Saturday night that his testosterone was in the 80s (should have been in the 600+ mark). I called the endocrinologist Monday, and asked for a repeat draw because I thought it was an error. We got those results Wednesday morning, and it was now in the 70s. The nurse called and told me Ryan had an MRI scheduled in 20 minutes. Two hours later, they called and told me there was a mass.
The original MRI stated it appeared to be a chordoma. However, our first surgeon swore up and down it wasn’t. The first surgery was easy. The doctor was confident he got it all. On June 12, our world was rocked when we learned it was a chordoma, then in the following weeks we learned there was still tremendous tumor left. We followed up with MD Anderson where he had a second surgery. Dr. Raza got all of it out, but it had spread into the cavernous sinus and the first layer of dura. There were no symptoms and our surgeon said we were lucky to have caught it. He did end up with meningitis from this surgery due to a spinal fluid leak, but it was easily resolved with 5 more days in the hospital and 10 days of home antibiotics. He ended the year with 35 rounds of proton beam radiation with very little side effects.
My biggest piece of advice would be to listen to the people at the Chordoma Foundation (they originally said I should wait to see another doctor before the first surgery if there was a single bit of suspicion that it may be a chordoma). Ask for help, because it will come from everywhere, even places you didn’t expect. Ryan is now a stay at home dad and travels to Houston every three months for the next three years. We have all slowed down and enjoy the moments more. We can’t live our lives for those three months, hoping for good news. We just make the most out of each day and try to make memories to last a lifetime, no matter how long that may be.
—Carolyn’s Uncommon Story
I was 15 when I was diagnosed with a Clival Chordoma and my only symptom… I snored. I then proceeded to get 2 major surgeries within a week of each other and get radiation treatment in a different country. At 15 years old, leaving all my friends for 2 and a half months for something I didn’t understand was devastating. I got through it seeing the world a little darker and a little brighter. Enjoy the little things because the darkness in the world can be very dark. I smile a little bigger now to spread the good in the world because you never know who needs it. My dark days however are also a little darker because of it. Two years later it came back in a lymph node in my shoulder. I then got another surgery to remove it. Four years later its back again. We found out it was growing again because the radiation from the first round had deteriorated my spine so much it broke. I was bed ridden for about 6 weeks in so much pain that I couldn’t stand long enough to go to the bathroom. I then met my surgeons on a Wednesday and was in for surgery on the Friday where they fused my C4 to my skull and took a piece of hip to do it. They told me they couldn’t stop the tumor anymore because I had gotten my max dose of radiation for my lifetime. I sent it away for testing to see if there were any other options for me. To everyone’s surprise they found things. I now have a few options. However, while I was waiting for the results I pursued other non-traditional medical treatments. My 2 month follow up CT showed no growth since starting these non-traditional treatments. Now I’m not sure what to make of it. I do my best to hold onto the good moments and live my life to the fullest. When I first started this journey, I thought I could do the surgery and radiation and be done. I realized when it came back the first time that it would be a lifetime of monitoring and got very depressed for a long time. I still struggle with it. This is a lifetime diagnosis for me. I am still working on living with it and hoping to help some people along the way. I would have loved to have known I wasn’t alone in this diagnosis and through all the hard things I had to go through. My family is great and always there when I need them, however, it would have been nice to know someone was going through something similar. At the time, the chordoma community wasn’t large especially for a 15 year old. So, for anyone reading this. You are not alone.
—Sydney’s Uncommon Story
I was diagnosed with cervical spine cancer at the age of seventeen. It changed my world forever. I discovered that I now will always be a warrior, not a worrier. I learned to love my self, have courage in myself, and for sure know that I was stronger than I thought. I never thought I’d be spending twenty-six days at the Children’s Hospital of Philadelphia. Having my mom, dad, brother, sister, so many other family members and even strangers by my side during this entire journey. I underwent two major surgeries over the course of a month in August. Having PT, OT, and so much more just to regain my strength back. I even had to learn how to walk again. I wore a neck brace for five and a half months. I went through forty-four doses of high radiation and even though it was one of the worst things to go through, I definitely came out a stronger person and was praying that this crazy machine would kill this awful cancer. I was no longer the normal girl in school, I was now known as the girl with cancer. I get asked questions every single day. Days I didn’t even want to come to school because I got stares and talked about in every class. I felt and knew I was the outcast. Going through this makes you a stronger person for sure. You learn not to take things for granted. Children, adults, and even elderly people are never alone no matter what. There is always someone you can talk to, never feel like you’re different. There are people in the world that are just like you, so don’t be worried. You may feel different, but if anything you’re special in your own way. I learned that cancer is a serious situation and they need to find a cure. Chordoma is one of the rarest cancers out there, that more than half the world doesn’t even know about it. Even though this took over my life and I wish I was never given it, I know there is a reason for everything. Everything happens for a reason. Cancer will only be a chapter of my life, not the whole story. Love yourself and stay strong. You are loved.
—Hailey’s Uncommon Story
My story with a clival chordoma (skull based tumor) started 13 years ago. I began having migraines, which a Neurologist told me was probably hormone related – “lots of women get them during menstruation.” I said no, this is something new. The pills he gave me didn’t work. I asked for a brain scan, and he told me it was a waste of time. I said “it’s my time,” so he ordered the test, and 2 weeks later he told me that they spotted a small cyst. He said it was probably nothing so they wanted me to have an MRI with contrast, and if anything is growing it would “glow.” He assured me that nothing is going to glow, as cysts show up all the time in these tests, and insisted it’s just a “waste.” Two more weeks went by, and he apologized to me. I said, “It’s glowing, isn’t it?”
I couldn’t believe I had a tumor in my brain, as a single mother with two children ages 13 and 7. I was in a panic, but had to be strong for them and keep my full-time job. I did a lot of praying and crying. I was told to schedule an appointment with a neurosurgeon. I chose Dr. Carlos David at Lahey Clinic in Burlington, MA, and we proceeded with total a resection. He wanted to know how it was found because he had never seen one so small. He explained to me that usually they are found when they are baseball sized, and interfere with vision and hearing. I said I insisted on having tests done. He said it was a good thing. I had a transphenoidal resection (which basically means the tumor was small enough that they removed it through the sinus cavity), no head shaving or anything. I had Gamma Knife radiation in case any cells were left. It was a difficult and painful time for me and my children. I had wonderful support from my family and friends. My daughter’s cheerleading coach was simply the best. She picked her up, and dropped her home to keep her busy, and even donated gymnastics lessons for her. I was truly blessed. I had follow=up MRIs two times a year for the first few years, and now every two to three years. I just saw my daughter get married, and my son grow into a fine young man. I married a man five years ago who is my best friend. Life is good.
Always listen to your inner self. If you think something is wrong, don’t take no for an answer, you only get one life, and it’s your life. Take care of yourself, and be your own advocate. Your life and your family depend on it. I thought it was the end, but it was only the beginning. Never give up hope, or faith. God works miracles. If you are going through this know that you are not alone, and it’s not hopeless. God bless you.
—Dorothy’s Uncommon Story
I am 62 years old and have worked in hospitals since 1975, so I was used to being on the outside of people’s pain and anguish. I had no symptoms, but I had stomach surgery on August 2, 2017. I began suffering a lot of pain in my shoulders, and the surgeon decided he’d get an MRI of my head and neck to see if there was a reason for the pain. He found nothing, but the radiologist found “a cyst.” They scheduled an appointment with a neurosurgeon to whom I went a couple weeks later. The surgeon began explaining a fairly elaborate set of diagnoses and methods of removal, which I took in as non-emotional data…right up to the point when she stood up, cocked her head sideways and said, “I’m very sorry.” Suddenly, I realized this was real, about me, and not so good!
My chordoma is still completely contained inside the clivus at this point, but the radiologist said that the edge was eroded. So, after lots of research, YouTube videos, testimonials, a second opinion from OHSU in Portland, and looking into proton therapy…my wife and I decided that we would wait three months and have a set of follow-up MRIs, in the hope that the current state may have been this way for 20 years or more! That being the possibility, we’re hoping to just monitor its size by having MRIs every six months, or possibly having proton therapy (if our insurance will pay) to shrink it. If things turn out differently, we may need the surgery (not a fan). My lovely wife needs me around so we can work together for the Lord in our retirement. We hope to go on many mission trips helping people. So, I do want to do the best thing for us. Thank you to those who share your stories. This is not where I want to be, but I think God wants to give me a good challenge! I hope I can make good of it!
—Doug’s Uncommon Story
I was diagnosed with chordoma of the clivus in December 2016. I had the tumor for at least nine years and never had any symptoms. I started getting a weird headache and finally had a CAT scan done where the radiologist thought it was a cyst. They recommended me to see a neurosurgeon. The neurosurgeon sent me for an MRI and it revealed the tumor. While trying to absorb the bad news, my wife and I were on a mission to find the right team to deal with this. We ended up finding the Chordoma Foundation and were very excited to find we were not alone. After research, we decided on the University of Michigan medical center, in Ann Arbor, MI. The team of doctors had a lot of experience with chordomas. Had the surgery on April 12, 2017. They were able to remove 99% of the tumor. They were all great. I will be starting proton radiation this month. I was lucky to find this Foundation that directed me to the right doctors. I do not have any long-term side effects from the surgery. God Bless.
—Jeff’s Uncommon Story
My chordoma story started in 2000 when I felt a pain at the bottom of my back while sitting. My pain gradually worsened over four weeks, so I decided to see my doctor. My doctor couldn’t determine the cause of the pain and prescribed Ibuprofen. I spent the next several years seeking help from different medical professionals – physiotherapists, chiropractors, and acupuncturists – who were unable to resolve my pain.
Five years passed, and my daughter, Gemma, suggested I go back to my doctor and request further investigation into what could possibly be causing me so much pain. Finally, in August 2005, my doctor arranged for me to have an MRI at Warrington Hospital.
Two weeks after the MRI, my wife, Gill, and I returned to Warrington for my results: I had a ball of matter the size of an orange attached to my coccyx. I was then referred to Royal Orthopaedic Hospital for further tests and a biopsy. The next two weeks spent waiting for the results felt like the longest of our lives.
Following the scans, we met Professor Grimer, who was to become my surgeon. Mr Grimer explained that I had a rare form of cancer called chordoma, and the way to treat it was to have it surgically removed. The tumour was very close to my bowel, and I would need to have a colostomy bag that could be reversed at some time in the near future if all went well. He told us that I was to undergo a major operation that would take about 10 hours to perform and result in a very large wound running up my back. I would be in the hospital for about three weeks and would need to learn to walk again.
I woke up from my surgery on January 4, 2006, to see Gill and my two daughters, Gemma and Gina. This was a very emotional time for us all. The next week was spent in bed until I was well enough to learn to walk again. Twelve days after arriving in hospital, I was allowed to return home. During my first month at home, I had my wound dressing changed and repacked every day at home. In the meantime, I was getting used to my colostomy bag and beginning to go outside for short periods of time. Finally, after about six weeks, I started to ride my bike again and gradually spend time at work. I was determined to stay positive throughout my journey, despite several setbacks along the way.
In April 2008, it was discovered that my tumour had recurred. It was the size of my thumbnail, and it was decided by my medical team my surgeon would try to remove it during a CAT scan. When I woke up from the anesthetic, I was told that the operation was unsuccessful and that they would try again in a month’s time when the tumour had grown a bit more. In May 2008, I had the second tumour removed successfully.
I had another recurrence in June 2011 and a successful surgery to remove it in July 2012, at which time it was decided that I was a good candidate for proton beam therapy. Proton beam was not (and is not currently) available in the UK, but the National Health System approved funding for my treatment to be carried out over three months in Florida.
I have since had clear scans, and Professor Grimer made me feel fantastic at my consultation in October 2015 saying, “Gary, if there was ever any evidence that chordomas can be cured you are the living proof.” Today I remain symptom-free.
Throughout this journey, I have always remained absolutely positive that I will beat this cancer. I am eternally grateful to my wife who has shared this entire journey with me and has always been with me during my treatments, consultations and scans. I can’t thank her enough. I am also grateful for the love and support from my two daughters (Gemma and Gina) and grandchildren (Liam, Leah, Lexie and Lacey). I now look at myself as a cancer survivor and would like to share this story with other people diagnosed with chordoma – I am living proof that it can be defeated. I hope this encourages people to remain positive throughout the journey. Here’s to the future.
—Gary’s Uncommon Story
On a Friday afternoon in the fall of 2011, on my way to lunch with my husband Sean, I made a quick stop to pick up a copy of an MRI taken a year prior for increasing and changing migraines. Sean waited in the car while I ran in to pick up the records. In addition to the CD, the envelope included the radiologist’s report which I pulled out to read…just out of curiosity since my neurologist had, after all, told me many months before that my scan was just fine. The report was short, only a few lines. It stated that I had a lesion in the base of my skull, in something called the clivus. The differential diagnosis – a short list of the most likely diagnoses – listed clival chordoma at the top. We didn’t make it to lunch…
Over the course of that weekend, I learned that this type of tumor was not just uncommon, but exceedingly rare, occurring in only one in a million people. While the radiologist viewing my film had correctly identified the tumor, my treating neurologist failed to see it and inform me. I learned that many patients similarly confront delays in diagnosis and chordomas are often mistaken for other types of tumors.
Information was hard to come by and what little I could gather was not promising. Treatments sounded dreadful and the prognosis dismal. The compounding impact of being diagnosed not only with a life threatening disease but one that is so very rare is difficult to put into words. Even among top neurosurgeons, few see more than a handful of chordoma cases in their entire careers. No one was going to have stories of family members, friends or co-workers that had gone through this before. I was alone and walking a completely unknown path. That would, however, soon change.
One of my very early searches led me to the Chordoma Foundation and a strong, knowledgeable community of survivors. Within days, I was in touch with other patients and gathering information that simply wasn’t available anywhere else. Most importantly, I came to understand just how critical my first surgery would be and not to rush into treatment. Fortunately, chordomas are usually slow growing. I was rescanned within days and thankfully, the tumor had not changed over the course of the year since it had shown up on the first MRI. The migraines were unrelated, this was an incidental finding. The collective support of this group was literally a life-line through some of my darkest of days. Not only was I able to keep moving forward, I now had a plan.
The next few months were spent consulting top neurosurgeons and oncologists who had experience in treating chordoma. I covered all the bases, got answers to my growing list of questions and with the encouragement of family and friends (many of them now virtual) I made my decision.
My tumor was resected in March of 2012 by a very experienced team of doctors in Pittsburgh. My neurosurgeon had operated on over 100 chordomas. I recovered quickly but there were a few bumps in the road. Decisions needed to be made about radiation, unforeseen complications occurred, treatment plans changed at the 11th hour and I required a second surgery to have a shunt placed. My gratitude to the phenomenal medical team who continues to get me through this with a promising prognosis is indescribable.
For many months, I did a lot of wishful thinking, not wanting to face any of it. Heading into brain surgery wasn’t easy and living with a disease carrying such a high recurrence rate has felt, on some days, to be more than I can bear. I am not particularly brave or courageous, but they say courage is not the absence of fear, it is doing what is necessary in spite of the fear. In the words of Robert Frost, “the best way out is always through”. These words have helped me find the courage needed to face the hard things that come with a disease like this. I am reminded of them every 6 months when I board another flight to Pittsburgh, when I walk through the hospital doors with the worst kind of nausea, when I lie on the table and slowly slide into the MRI tube and during those endless moments of waiting for the results. My anxiety ebbs and flows, but thanks to the Chordoma Foundation, research is accelerating and with exciting new findings, there is real hope for desperately needed treatments.
As I approach November 11th this year, 3 years from that day that I first read the words clival chordoma, I reflect on my continuing journey and how one’s perspective alters over time. In the early days, I was certain that I would never be the same. I experienced profound grief for the “old me” and my “old life.” And while it is true that I am not the same and life is different now, I am still me and life continues to hold much happiness, laughter, joy & possibility. I certainly wouldn’t have chosen this journey and I am not a “silver-linings” kind of girl, but it’s hard to deny the unique intensity and beauty of life that comes with a real understanding of how fleeting it all is.
—Allison’s Uncommon Story
My name is Heather and I am a Chordoma Survivor. Never did I think that, just over a year ago, I would be starting my cancer warrior journey. In October of 2012, I woke up with severe pain in my lower back and in my glutes. These episodes required painkillers to get through and usually a few days to recover. I finally went to see my doctor. He thought it might be piriformis pain and sent me to see an orthopedic surgeon. The orthopedic doctor too wondered if this was just muscle pain that I needed physical therapy for. The next step in my journey would be the turning point to discovering the cancer. An unrelated illness caused me to end up in the ER with a small intestinal blockage. The doctors did a CT scan on my abdomen and pelvis. The blockage cleared within 24 hours but shortly after my hospital stay, the doctor caring for me asked me to come into his office. He’d found something, they asked me to have an MRI. I was terrified but knew I had to find out what was going on. For me, faith was an integral part of staying calm as I did a lot, I mean a lot, of waiting.
I recall the surreal feeling of visiting my oncologist’s office the first time. Surrounded by the beauty of Seattle, this building was filled with people with in their own cancer story. I even recall the hospital band being placed on my arm. I felt marked, and it felt ominous. When we finally sat down with my oncologist, he said that the MRI results indicate a cancer called Chordoma. I had no idea what that really was. I had done some researched but had decided to take what I learned one step at a time. Next, I was sent for a biopsy in order to get a more definitive diagnosis. The week of waiting seemed like an eternity. I considered this journey and prayed a lot and talked a lot and tried to process the potential diagnosis that could change my world. What will I become after this? I even thought that I might be preparing to fight a battle that would also be my end in this world. The day finally arrived and we waited, nervously, but with a strange peace, to hear what this THING that was growing in my body is. The answer came. “Heather, you have Chordoma.” I said very calmly, “Ok, what do we do?” My doctor informed me that I would need surgery to remove the part of my spine that had been invaded by this unwelcome visitor. “What does this mean, what is going to happen to my body, how will I be when it is done?” The questions swirled in my head and I spent a lot of time writing down my questions and asked them and noted the answers. I was determined to be as prepared as I could be. As I prepared for the surgery, I thought about who I wanted to be during this fight. I wanted me to shine through no matter what and remain true to myself and that faith and strength and courage would carry me!
One of the most heart-wrenching parts of this battle was sharing this diagnosis with my family and friends. This proved to be what would help me be brave. My husband and son were my primary support system here, and my daughter, who lives in another state, could not be here but sent love and support that I needed. My friends and family created a Facebook page for me where they would send messages of and love and support. The messages gave me courage and helped me remain me, not just a woman who has cancer. I didn’t want to be labeled or hold the cancer diagnosis too close. It would be something I would come through and not stay in.
Surgery day came and I felt more peace than ever and was ready to face this challenge. I was very blessed to have my husband stay by my side through it all. My brave teenage son held down the home front and cared for our dogs while I was in the hospital. My very best girlfriend came to stay with me in the hospital too and helped me keep my sense of humor as I learned what this surgery had done to my body. The doctors were confident that the surgery had accomplished what they had hoped – clean margins and no evidence of cancer! Part of my sacrum was gone- S3 down to my tailbone. I woke up from that surgery delighted that everything seemed to work and move well!
I discovered that I was able to keep laughing, keep believing that I could beat this cancer and come out a better more true self. It took a long 4 months for my surgery wound to heal, but all the while I knew that I could and would get through this. Starting in late January, I began 32 treatments of IMRT radiation. I gained strength even just walking from my car to my appointment. I came to love my team who helped me through this part of my cancer experience. Laughter, smiles, and lots of gentleness kept me going. I found an invincible part of me could help me stay true to me and this challenge helped me become even more of who I could be. Ringing that bell at the end of radiation treatment seemed to release me back to life. I have grown stronger and more determined to take each day as it comes and beat this cancer. If I can do it, anyone who is visited by this cancer can do it!
—Heather’s Uncommon Story
My journey with Chordoma started on October 29, 2004. The doctors in my state give me a 50/50 chance of survival. The doctor at Memorial Sloan Kettering gave me an 80/20. No brainer there, so On December 29, 2004, I had an 11.5 hour surgery and they removed a vertebrae that the tumor was grown around and put in an artificial one. I have 2 titanium rods with a cross over that holds me together. I then had 35 treatments of radiation. It took me a year to recuperate. It returned again in 2011 when I had another small surgery and a small patch of radiation. This was a walk in the park compared to the first surgery. In 2013 I had a chordoma tumor that started growing on my side. They removed it and put in a wire mesh. Now in 2014, I have 3 more small spots in my back, so they are getting ready to do radiation on me in that area. It is so close to my spinal column and nerves they have to be extra careful not to damage them with the radiation.
I was a wood worker by trade and had to give up that part due to a weight limit of 30 lbs for the rest of my life. However, I can still do small and light stuff with wood and being able to do this has given me great joy. I believe having a great outlook on life and keeping yourself busy is 3/4 of the battle. Having awesome doctors and believing in a much higher power through God and lots of prayers to get us through this trial in our life. Now I have a granddaughter and that makes me want to fight harder so I can be here for her as she grows up.
—Scott’s Uncommon Story
It was a long road to recovery after I was diagnosed with chordoma in 2009. Following surgery to remove a large clival tumor, I spent four weeks in ICU, underwent radiation treatment and battled with side effects that lasted long after I left the hospital. Having had the benefit of world class surgeons and a superb radiation specialist, I began to consider what I could do to help the broader chordoma community.
After meeting with the founders of the Chordoma Foundation and learning more about their model for advancing research and the progress they were making, I realized that this small organization was going to have an exceptionally large impact. My wife, Shari, and I began providing regular financial support to the Foundation and, in 2011, I joined the Board of Directors.
Several things have particularly impressed me about the Foundation – the incredible research it has sponsored and promoted; the applicability of this research to more common forms of cancer; how the Foundation has become a model for other rare and orphan diseases; and how the Foundation is increasing its commitment to education and outreach to ensure that every patient has the information and ability to make the best treatment decision.
I am excited knowing that the Chordoma Foundation has made remarkable strides toward new treatments that will mean better outcomes for everyone affected by this rare disease. We are making great progress and, together, we are moving closer to a cure.
—Joel’s Uncommon Story
On December 19th, 2013 I started to have health complications which included severe double vision, dizziness, and nausea. Over the course of the next week, Sarah (my wife) and I made visits to different doctors and specialists. It was explained that I am suffering from ‘6th nerve palsy’, which means something was affecting the nerve that controls the movement of my right eye. I was scheduled for an MRI on December 26th. The very next day, I received a phone call that would immediately change our lives. I was told that I had a large tumor in my head pressing on the nerve behind my right eye. The doctor then scheduled a meeting with a Neurosurgeon a week later. On January 3rd, I met with the Neurosurgeon and the news he delivered was what we feared most. He explained that my tumor was not benign, but, in fact, cancerous. It is called a chordoma tumor, located at the base of my skull. The 2-inch wide tumor is positioned between both of my carotid arteries, below the pituitary gland, and in front of the brain stem, so the surgery and radiation are very risky due to all of the major structures which are located around the tumor. Over the next week, Sarah and I did everything we could to find the best doctor/surgeons in the country to remove as much of the tumor as possible. We are hopeful that a total resection will happen, and then proton beam radiation therapy. We have our good days and our bad days. We sometimes wonder why this would happen to us. But we have faith that God will see us through this. We have faith in God’s perfect plan and that He will give us the strength we need during this journey of ours. We are determined to beat this cancer through our faith in God, our diet, and personal fitness. We are so lucky and blessed to have amazing support and love from friends and family across the states and around the world. I am most thankful and blessed for a wife that has amazing strength and hope. I would never be able to fight this without her. We are determined to beat this and we WILL beat this!
—Jeremiah’s Uncommon Story
I was diagnosed in June of 2009 at the age of 26! I had been complaining for over ten years of extremely bad back pain. They had told me it was because I was overweight. Finally, in March of 2009, I found a doctor that would do an MRI and not just give me some pills. By April I was having back surgery because they thought I had a blown disc. When an amazing doctor went in and did surgery, he came back and said in his 40 years of practicing he had never seen gunk like that! They sent it off to the lab and in June I got the call that I had chordoma. They told me there was nothing they could do and no cures so just go home and live every day like it was my last. Well, being a single mom of a 5-year-old that just wasn’t acceptable! In September of 2010, after lots of blood, sweat, and tears, I learned about a treatment called proton beam radiation at Loma Linda University. In January of 2011, after fighting with insurance companies, I finally got an appointment. In February I was seeing another surgeon to see if they could remove more of the cancer. By March I was having another surgery and in May I started proton beam radiation. It was 40 session, 5 sessions a week. That meant raising money, moving to a big city for 3 months, leaving my daughter with my parents, and going through it alone! Thankfully, I made lots of friends at Loma Linda that were having proton treatment for prostate cancer. It wasn’t the same cancer but they knew what I going through. I am now stable. The cancer is still there but it hasn’t spread thank God! Just try to remember if you are down everyone around you is going to be down, so if you stay positive through your fight, you will be an inspiration for everyone else!
—Jessica’s Uncommon Story
In 1998, I developed double vision while visiting with my wife’s family in Mississippi. Several MRIs later, surgery was scheduled to remove what was thought to be a pituitary adenoma. Dr. Mark Krautheim discovered that this was not a pituitary adenoma and stopped the surgery to await pathology results. It turned out to be a clival chordoma. I scheduled a minimally invasive procedure with Dr. Hae Dong Jho and followed this with Gamma Knife with Dr. Dale Lunsford and the tumor remained stable for 5 years. At 7 years post diagnosis, I had another minimally invasive procedure to reduce tumor size. Over the years, I’ve had several more procedures, some complications, but overall, I was able to continue ski instructing, fishing, hunting, and enjoying life.
In 2010, my physical abilities were compromised after the cranial bleed. I developed hydrocephalus and dysmetria. It is now 15 years since my diagnosis. Last year, I had my first open craniotomy and followed that with Proton Therapy. In August of 2013, I entered a clinical trial for the brachyury protein at NIH. My tumor has been stable for over a year.
I do have physical impairments, but with some minor assistance, I can care for my basic needs. I have a sense of humor and enjoy people. My dancing has slowed a bit, but I still enjoy music and a few slow steps. My wife and I travel a lot…usually adding days to medical trips. It has been wonderful to attend family weddings, to enjoy our nieces and nephews, and to visit with friends all across the U.S. Our faith is strong, our physicians have helped us throughout this journey, and our 33-year long marriage supports us in the difficult times. Dr. Jho told me that no one knows how long we have, but we do have choices about how we live what time we do have. I know that I will continue to fight to live, and I am so excited about the new research and possibilities for future treatment. While the diagnosis of chordoma is scary, there is hope for a future and a good one at that.
—Adolf’s Uncommon Story
Like most single, young women living in a big city on their own, I couldn’t foresee anything threatening the bright future ahead of me. But my life turned upside down one morning when I woke to a blurry vision. Within an hour, the symptoms progressed to a severe headache and nausea, and a brief episode of numbness in my left hand. The instructions from my doctor’s office were straightforward: Come here now. Don’t drive your car. My doctor performed standard neurological tests in her office, but couldn’t find anything suspicious. She said she rarely ordered MRIs, but wanted me to have the test to put her own brain at ease. A few days later, I got a call at work I was never expecting: “It’s a good thing we did that MRI after all. You have a mass in your brain, and it needs to come out.”
The next day, a local neurosurgeon explained that the tumor was on a bone at the base of my skull called the clivus, measuring 3x3x3 cm. Still dumbfounded, I saw three additional neurosurgeons from top medical institutions, who all suggested different approaches with varying prognoses. With no consensus, I realized it was up to me, a layman, to make a medical decision that would affect the rest of my life. Research led me to an expert who was confident that I had a chordoma, a rare, slow-growing tumor comprising just 0.2 percent of all brain tumors, less than 200 people a year. He told me that my treatment, involving surgery and radiation, would consume the next year of my life. Armed with this information, I refocused my search and sought a fifth and final opinion with a brilliant and compassionate team of surgeons – Drs. Chandranath Sen and Peter Costantino.
It took a tremendous amount of strength for me to schedule the surgery, and even more to walk through the hospital doors. After waking from the nine-hour operation, I wiggled my fingers and toes. Yes! I’m OK! But unfortunately, only half the tumor was removed and I would have to return six weeks later for another surgery of the same magnitude. I was devastated that I had to do it all over again, and almost gave up. Walking into the same hospital for the second time was the worst kind of déjà vu I’ve ever experienced. But this time I woke to good news: they got the whole tumor out! I followed my surgery with proton beam radiation at Massachusetts General Hospital, which at the time, was one of only two centers in the country offering the specialized treatment. I was humbled by the other patients I saw over the two months, some who were on the road to recovery like me, and many others, who were still at the beginning of their journey. My treatment culminated with a flight home from Boston on May 18, 2004, exactly one day shy of a year from that one and only day I had symptoms. As a side effect of the surgery, I permanently lost my sense of smell; but gained a tremendous sense of self. Years later I married the love of my life and delivered a healthy, beautiful baby girl.
—Lindsay’s Uncommon Story
Dad was diagnosed in July 2012 when an MRI identified a tumor on L1 – L2. I reached out to the Chordoma Foundation via Facebook in search of advice on how to proceed. The Foundation responded very quickly with your phone number. During our one phone conversation, CF was able to provide me with some meaningful and actionable guidance. Some of this included the importance of seeing a doctor with specific experience in treating chordoma, such as the surgeons at Johns Hopkins. The Foundation also advised us to seek out multiple opinions on treatment plans and to not necessarily go with the first surgeon we met.
Together, the two surgeons, a radiologist, and a team of other doctors devised a plan for pinpoint radiation (cyber knife) followed by back-to-back surgeries in September 2012. During the first surgery, which took about 11 hours, they put two titanium rods through eight vertebrae. On day two, the surgeons removed the tumor and two impacted vertebrae and installed a mesh cage to fuse the remaining sections of his spine. This second surgery lasted about six hours. Dad stayed in the post-surgical unit for a few days, then recovered in the rehab wing for about two weeks. His total stay at the hospital was only three weeks.
The operations were deemed successful at removing all signs of cancer and minimizing collateral damage. Dad was walking carefully on his own when he left Hopkins. By Thanksgiving, he was fairly mobile and going up stairs. By Christmas, he was back to cooking as usual and hosted our family for Christmas dinner! Today, 10 months after surgery, he still has numbness in his quadriceps, some swelling in his lower legs/ankles, and stiffness in his back. But he remains in control of all bodily functions and is back to his optimistic, sarcastic self. Actually, I think he remained optimistic and sarcastic the entire time.
While we aren’t sure if Dad will be able to play tennis again, he can certainly drive a car, fly fish, cook delicious meals, enjoy a good microbrew, and teach his granddaughters to sketch beautiful drawings. We are blessed by the results of his surgeries and rehab, and I am so thankful for the guidance and support CF gave me last summer. Thanks to the Foundation’s encouragement, we were able to meet this frightening, intimidating situation head-on…and beat it.
—Stephanie’s Uncommon Story