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.

Diagnosis: I remember my girlfriend and I were practicing cheer-leading routines as we were about to enter 7th grade and we wanted to be cheerleaders. All of a sudden I hit my knee on my bicycle bar and from that point on, the pain would grow each day. Finally my mom sent me to a chiropractor and he told my mom to get me to an oncologist. The oncologist told my mom that I most likely had osteogenic sarcoma and he recommended that she take me home to die. My family doctor, who was bull headed and stubborn, made arrangements for me to get treatment at St. Mary’s hospital in Rochester MN.

Treatment and Metastasis: Back in those days, the leg was removed, not salvaged. My right leg was amputated above the knee. It’s been so many years that I really do not remember what drugs I was given, but I do remember being very sick. I was fitted with prosthesis and sent home. Every three months I received chest x-rays, as they said the cancer could metastasized. Well, it did, three times: 1968, 1969 and 1970.

Recovery and More Cancer: I went about twenty years without any more problems and then in 1996, I was diagnosed with breast cancer. I had a mastectomy and reconstructive surgery.

Life Now: I have been fighting cancer for most of my life. People tell me I am too stubborn and too mean to die…..well, they could be right. However, just a few months ago, I developed a pressure sore on my rear (I now use a wheelchair to get around as I am OLD!) Well, the pressure sore didn’t heal and I ended up with a staph infection that settled into my one and only knee! I had to have knee surgery and my recovery has been really tough as my knee is very unstable and hurts most of the day.

People I meet and tell them what I have been through are amazed….however, my emotional health has been less than great. I suffered from depression, anger, and self pity. BUT, on the bright side, and this is HUGE, I do have a wonderful 27 year old son. Growing up with a disabled mom has made him into a warm and compassionate human being.

Thoughts and Hints for Patients: I really get frustrated when I see people still getting diagnosed with cancer. My diagnosis was over thirty years ago and I had hoped by now there would be a cure….HOWEVER, thank God, now docs can perform limb salvaging surgeries.

I am not the perfect survivor of cancer…but I have survived. My advice is to fight HARD! Don’t ever give up.