My parent decided that I would take an ambulance ride because I was in agony. That was cool because the paramedic was giving me a laughing gas to help to ease the pain. Upon my arrival in the Emergency department at Middlemore hospital, a Bone Specialist check me and ran a blood test.  He look at the x-ray and both were negative, so he said he would refer me to Dr. French and Dr. Flint, Bone Tumor specialists.  I could see my mother’s face turn to sadness and worry. I am the only child and I know I am her world. Even while I was in agony I give her assurance that I was fine and it was nothing serious.

I was admitted to the Middlemore Hospital to have more tests (MRI,  CT Scan), but there was no sign of cancer growing. My doctor order a bone scan and the bone scan come back negative. Lucky I have a very stubborn doctor. He performed an operation on my broken arm and got a little piece of my bone and send it to the lab for a biopsy. On October 9 2008, a phone call from Dr. Flint confirmed the result that it was high grade osteosarcoma. My first thought that was for my parents, especially my mother, because I knew my mom would not handle it well. Lucky in our country we have a lot of support, but still my mother was not handling it very well. She cried 2 days continuously until I told her “even if she flooded the whole country by her tears it doesn’t change the result: I have cancer.” I gave her an ultimatum: either to walk with me or kill herself. I told her the match is not over yet, yes I lost the first set, but I will fight to win.

Doctor French referred me to the Auckland Hospital Oncology Department. I meet Dr. Porter, an oncology consultant. He told me the plan; he said that I would have 4 cycles of chemo first in order to save my arm.  November 1, 2008, was my first cycle of chemo treatment, Cysplatin and Doxorubycin. I remember I was teasing the nurse who treated me when he give me the steroid drug that if I was playing a tennis match and  I will be banned for a year for taking the substance. She laughed at me. It was boring for the whole day because all I could do was lay in the bed and go in the toilet. I was watching the clock ticking and couldn’t wait until 5pm because I was allowed to go home. I went home and was happy that I did not feel sick, but 9pm struck and I was sick as a dog. My mother rang the 24 hours hospital help seeking for assistance. The nurse told her to take me back to the hospital.

I lost 14 kilos in one week. I was joking with my oncology registrar, Karen, that chemo is a very good diet. She laughed at me. I am very lucky because all my doctors and nurses are wonderful. I remember during my 2nd cycle of chemo that I give Karen a fright. Because I was very sick in my first cycle of chemo, Dr Porter change the anti-nausea treatment he order to give me a 24 hours automatic nausea release treatment. When Karen came to visit me the next day at 8am I was still asleep. So she left me alone and told my mother she would be back at 11 to talk to me, but when she came back I was still sleeping. She woke me up but I could not manage to stay awake for long. She jumped very quickly and ordered the nurse to remove the automatic release nausea treatment. Karen knew that was not the Bryall that she knows, because at that time she was the one who was doing all the talking. Mostly when they come to my room I am always making jokes to them. I worried her so much that she visited me 3 times on that day. My nurses came and checked me every hour. I was very lucky to have a wonderful team that looked after me. After 4 cyles of chemo, I  finished the CT scan and MRI showed that the cancer did not shrink. The good news was I responded to the treatment well because the broken bone was healing,  but it was not enough to save my arm. My Doctor give me 2 options: (1) keep my arm but 50% chances the cancer will come back. (2) Amputate my arm and 95% chance the cancer is cured. To me I only have one option, I wanted to live longer. So on February 4, 2009, Dr. Flint amputated my arm. Six weeks later I had another 3 cycle of chemo. Being an athlete for my whole life helped me to recovered quickly.

Next year I will be going back to University which I did last year before Cancer. I will continue to study Psychology to become a counselor. I want to help both cancer patient and survivors. My life now is wonderful, I open another door which is close before, I become a face of our Daffodil Day appeal to raise money for the Cancer Society. I also do  inspirational speaking for the Canteen (Cancer for Teenagers) to raise money. I refuse to dwell on what might have been and instead have focused on what I have to do to adapt to life as an amputee and cancer survivor.

Since the operation, I have been learning to write with my left hand, and working hard at mastering the everyday tasks that are second nature for those with two hands. It has been tough. For three months, I’ve been practicing my writing every day. The fact I don’t have my right arm to keep a grip on the paper makes it especially difficult, getting dressed is a lot harder than it used to be. Before I go out I have to have my clothes prepared. It takes ages to open a drawer because we normally need two arms to do that. I’m adapting though, and I’m doing totally fine.

I consider myself lucky that I broke my bone because if I hadn’t found out then, the cancer would have spread to my internal organs. Now on my way to recovery, I have rekindled my passion for competitive sport. As a child I use to swim.. Now I been selected as an xcellerate swimmer paralympian athlete in New Zealand. I swim one and a half hour 7 times a week. I started competing last November, and my aim is to compete in Paralympic 2012. My ordeal has taught me to value every day. “I believe you should live your life to the fullest – you never know what is around the corner.”

Bryall’s Story
Osteosarcom at the Proximal Humerus
Date of Diagnosis: October 9, 2009
Age at Diagnosis: 19
Location: Auckland, New Zealand
Surgeon: Dr. Flint and Dr. Gary French
Oncologist: Dr. David Porter / Dr. Karen Amies

That summer I went to sleep over camp. I feel and hit my knee on a rock- no big deal until I got a bump that wouldn’t go away. I had my physical the week after I got home so I mentioned it to our NEW pediatrician. She felt it and kept her hand on it while talking to us. She sent me for an X-ray that day (a Wed), and that night I went to my friends summer home. The doctor called my mom the next day and said I needed an MRI and it needed to be done Friday. I had it done and we received a phone call around 7pm that night saying there was something on the MRI and whatever it was needed to be checked.

An appointment was made for me at Mass General on Monday morning. We went to the appointment- outside the office was a sign that said “orthopedic oncology.” At 13 I had no clue what that meant, but my parents knew. The same day I had a biopsy done and within an hour we had the results that it was osteosarcoma. I went home that night crying, afraid I was going to die. Wednesday I was back at the hospital to get my central line put it and to start chemo.

Treatment: I had 10 weeks of chemo and then an allograft done, then had another 7 months of chemo. What a way to start off my freshman year of high school! Before I started chemo my mom asked about freezing eggs because she knew it could affect fertility, but they told her we needed to think in the now not the future.

Life After Treatment: During a routine CT scan to follow up after chemo they found a cyst on my ovaries-totally unrelated to the cancer. They needed to remove it, and in doing so ended up taking the ovary also. I was told then I would probably never have children. I was devastated. Two years later I found out I was pregnant! I was a miracle and a dream come true. I now have 2 beautiful children 6 and 4. It is hard some days when my knee is bothering me and I can’t get around easily and I can’t really run. It is a constant reminder of what I went through.

Thoughts and Hints for New patients: People tell me all the time they couldn’t do it. You might think that but when you are faced with this you don’t give yourself an option. My biggest thing that helped me was I never let myself get down. I always stayed positive. You have to stay positive and know you are going to get through this!

Osteosarcoma at the distal femur
Date of Diagnosis: July 1996
Age at diagnosis:13
Location:Massachusetts
Surgeon (optional): Dr. Hornicek
Oncologist (optional):Dr. Ebb

Diagnosis: I was playing high school field hockey (fall 1998) and my back hurt more and more each day. The pediatrician thought it was from my backpack being too heavy. Then basketball season started and it was hurting even more. One morning I woke up and my feet felt strange. I didn’t think too much of it. The next day my legs and chest were numb. We called the orthopedic doctor (since I was so healthy and only broke my arm once). They said it sounded neurological and gave us names of neurologists. Well one could schedule me in a month, another on Monday (it was Friday). My mom was on the phone with my dad trying to decide what to do and the third neurologist broke into the phone line and said he was off that day but to come in anyways. He did some tests and when we returned from the MRI, he had an oncologist, surgeon, anesthesiologist, etc. lined up.

I had an egg-sized tumor pressing on my spinal cord at T3 and T4. It was already rapidly suppressing my breathing and emergency surgery was in order. I had the surgery early the next morning. Thankfully I regained all my feeling during surgery. I started chemotherapy within a few days when it was determined it was Askin’s Tumor (in the Ewing’s Sarcoma family) It all happened so fast but I recall comforting my mother and worrying about letting people know about what I was going to miss. From the first minute of this crazy journey, I accepted it and whatever I had to do to get through it, I just would do it.

Treatment: I had emergency surgery Dec. 5, 1998 for my first tumor. They removed as much as they could of the egg-sized tumor but it had spindles that went all over. I did a year of chemotherapy–I had a “lovely” time with VP16 and Ifosamide every 6 weeks. Then every 3rd week in between I’d have “fun” with juicy red Adriamycin (the word still makes me shudder) and Cytoxan. Vincristine was a weekly event until I had trouble walking in March of 1999 and it was stopped. In March and April, I had 6 weeks of radiation interlaced with the chemo.

I was in remission for 2000. December of 2000 stem cells were taken to store in case I ever needed them. While studying them, cancer cells were discovered. I was more IN than out of the hospital for the next 5 months. Cisplatin and Ironotecan were the enemies of choice this time. June 3rd, 2001 I was admitted for my autologous stem cell transplant. Days of fluids led to VP16, Cytoxan and thiotepa. I was in for a good 6 weeks and had many complications.

Another year and a half of remission followed. Then Nov. 2002, a new tumor was found between my heart, lung and spine. I had maxed out on a lot of chemo and had a lot of radiation already and a transplant. Everyone else who ever had Askin’s Tumor and relapsed after a transplant had died within weeks. My prognosis was nonexistent. Months passed and the tumor only grew slightly. I had a tiny bit of radiation and a tiny bit of chemo just to keep me comfortable and help with breathing. A year passed and it seemed stable and not growing. The PET scans showed little to no activity in the tumor region. In May of 2004, a cardiovascular and thoracic surgeon took the tumor out safely. It was the size of a small nerf football. When they biopsied it, it was completely dead. The doctors were baffled and it is a HUGE miracle. It is believed I am the only person ever to survive this long with my type after a relapse after a transplant. I have been in remission for 4 1/2 years now and just take it a day at a time–there’s no one to compare me to!

Recovery:I have come a long way but still deal with many long-term side effects and take various medications. I have a weak right lung from radiation, my knees have arthritis, my gall bladder was removed and my thyroid does not work so I take medicine for that. I also have hormone deficiencies and chronic pain in my back and legs along with chronic fatigue. My intestines are damaged from my transplant and give me some problems although with time, it has improved dramatically.  Despite all of these possible deterrents, I live a very active and full life . There have been lots of ups and downs physically, emotionally and psychologically in this journey.

Life Now: I received my Associate’s in Interior Design last year and am now finishing my bachelor’s in Studio Art and Art Therapy (to prepare for a Master’s in Art Therapy). I do art commissions (murals, furniture, t-shirts, logos, canvases, a little bit of everything). I travel quite a bit for cancer related events and speaking opportunities. I help out with cancer kids’ camps and do things for local and national charities having to do with various aspects of cancer and other causes. I am also a published writer, national inspirational speaker and maintain a blog- www.obsessedwithlife.com.  I was voted as Glamour magazine’s 2008 Woman of Your Year which was a very amazing honor. I am always up for helping people and meeting new people.

Thoughts and Hints for New Patients: Trust your instincts and speak up.  Ask lots of questions! Find a doctor that you feel comfortable with and is familiar with your disease. You can get through this. Take it a day at a time. Plan little things to look forward to: a trip, buying a new book, whatever it is. It’s key to have things to life for and work towards. Accept that some days are bad and some are good and that’s ok. Surround yourself with people who support you-not ones that bring you down.  And don’t ever underestimate hope!

Editor’s Note: Rachel’s poetry has been published here and here. She has also written an essay in Cure Magazine. Visit Rachel’s weblog to learn more about her and keep in touch.

Diagnosis: I first went to the doctor in 1986 complaining of numbness and soreness in my left elbow. They took an x-ray of that arm, and happen to catch the left side of my spinal cord in the film. The doctor was able to see that there was missing and degraded bone centering around my T1-C7 spinal column.

Treatment: I was referred to KUMED for diagnosis and treatment. They did a biopsy which confirmed Ewing’s Sarcoma. For treatment at the time I was on alternating rounds of Cytoxin, Actiniomyacin, Adriomyacin, and Vincristine. I also did Radiation for 9 months concurrent to the chemotherapy. By the time my high school graduation came around in May of 1988 I was free and clear. At least for the next 15 years.

Recurrence: In September of 2001 my back started hurting in the same area. It soon developed into excruciating pain. I went to the emergency room at KUMED, told them of my previous condition, and they did a chest x-ray, gave me a couple of vicodin said I was fine, and sent me on my way. Two days later, I walked, or rather hobbled myself to the cancer center there, where they confirmed through an MRI that there was a problem again. This time I had a biopsy, which confirmed it, and five other surgeries to relieve pressure and remove scar tissue from my spinal cord.

The first time had me maxed out on radiation and most of the chemotherapies that I had previously been on, so this round I was on Ifosfamide and Mezna. I have had countless MRI’s bone scans, gallium scans, Ct’s and X-rays over the years. To be quite honest the thing that got me through this last time was the narcotics they had me on. I was in excruciating pain so the dilauded certainly helped with that, but it also made my feeling numb as well, and let’s just say, I didn’t get really emotional during that time.

Because of all the surgeries this time I lost my ability to walk, and I had to teach myself to do that over a period of nine months.

Everything slowly got back to normal, and I took a really long vacation after everything was said and done. After that I got back to working full time again, and just went on with day to day life.

Life now: Everything was going fine until about six months ago. I started having some minor pain in my back which was determined to be a compression fracture by an MRI scan. I got help with the pain, but it quite never went away. Over the last five days, the pain has become excruciating, and last night I finally went to the emergency room. This time, they sent word to the Oncology team and one of the oncologists, Dr. Flemming came down and ordered an immediate MRI. I found out this morning that there is a mass outside my spinal cord on the left side causing pressure on the surrounding nerve clusters. The oncology team is coordination with my orthopedic surgeon, Dr. Burton. Looks like round three is coming up.

Thoughts and Hints for Patients: I really don’t have any helpful hints, or lessons learned or inspirational thoughts. For me this has been a lifelong battle, and it doesn’t seem like it’s going to end any time soon.

Diagnosis: I was having stomach pain and went in for a CT scan to rule out appendicitis. While that was clean, they mentioned that there was a three inch mass that appeared to be in my lung. My doctor tells me that I’m her only sarcoma patient to not have any symptoms. At first, the doctors didn’t know what to make of my tumor. It seemed to be in the space between my lung and ribs on my left side. We went from doctor to doctor until we arrived at the professor of surgery at UNC. He said he didn’t think it was anything bad, but decided to take it out just to be sure. After opening me up, they saw that it wasn’t anything good and took out my eighth, ninth, and tenth rib, and the nerve that runs along there.

Treatment: After the chest wall resection, my next surgery was a port placement. They started me on chemo three weeks after surgery. A five day treatment of Ifex and Etoposide and a two day treatment of adriamiacin, cytoxan, and vincristine every two weeks for a total of fourteen treatments, seven of each. I am currently receiving treatment and am halfway through. I get a transfusion almost every treatment– I just got number six yesterday. The doctor has had to cut my chemo by 20 percent to try and keep me on schedule. I get Neupogen shots for wbc and a booster for rbc. Masks in public– I have some that have nice mustaches drawn on them.

Recovery in between sessions isn’t much fun, but I’m making it. The first three days are somewhat hellish, but after those I feel pretty normal. My current problem resides in low platelets, which keeps delaying treatments.

Right now, I just go from treatment to treatment. I’ve started baking to allay the boredom in between treatments. Friends visit occasionally. Most are in college, which is where I should be. I’m going back in the fall whether or not I’m done with chemo. My ribs hurt. I haven’t sneezed since the surgery, can’t do a full yawn or take a sharp breath. I also haven’t hiccupped, which isn’t necessarily a bad thing. I’ve had to change sleeping positions, too. My heart isn’t liking the chemo too much and reminds me of that occasionally. Overall, it’s not as bad as I thought it would be. However, that doesn’t make it good. Oh! I kinda miss having hair.

Thoughts and Hints for Patients: Be patient. It’s hard, I know, but take your time with everything. After all, there’s not a whole lot for you to do anyway. Let your doctor know about any problems from the chemo. There’s nothing they haven’t heard, and most of the time they can help. Don’t be scared. Cancer is scary, sure, but don’t be afraid of it. Try writing letters to it. I like to tell mine how much it sucks every once in a while. Don’t be afraid to use the C-Card when necessary. Having cancer sucks. Use it to your advantage. Finally, stop making plans for a while. Just sit back for a while. You deserve a break, anyway.