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 began having shooting pains in the fall of 2002 in my right femur while I was attending college full-time at the University of Kansas. I was an active 22 year old at the time and had no reason to suspect that there was anything wrong. I loved to run, was always pretty active and never felt any physical limitations growing up as a kid.

After steady pain, I decided to make a visit to my general physician and see if he could provide any insight into the pain. He said he thought that I might have a “baker’s cist” behind the knee and an MRI would tell us if that was the case.

The MRI came back negative and showed no signs of anything abnormal. Following those results he decided to send me to an orthopedic doctor in hopes we could find more answers. The doctor had some ideas of what he thought might be wrong and proceeded to send me through two MRI’s (one of my back, one of my lower leg) and one CT scan of my pelvis area. The MRI’s came back negative and the CT scan showed some enlargement of the veins in my pelvis.

The doctor told me that there wasn’t anything conclusive that there indeed was anything wrong. He said I would need to “wait until whatever it was got worse” so they could diagnosis it. Discouraged, I left the doctors and dealt with the pain for the following year.

It was not until I graduated college and moved to Chicago that I decided to once again follow-up on the pain I was having. With new insurance from a new job I went to a new general physician and explained my story. She began to examine the area where I said I was having really bad pain (mid-femur area) and she made an appointment for me to have an MRI of the area the next day.

I was at work on a Friday in February 2004 when the doctor called and told me to sit down. She said that there was a grapefruit sized tumor on my right femur and in her opinion amputation might be the best option. I had no family in town as I had just moved, so I did a lot of phone calling and spending time with friends to soften the blow.

My doctor called me the following couple of days and let me know that there was an orthopedic oncologist who was trained in bone salvaging…the concept of doing all that can be done to keep one’s limb from amputation. A few weeks later I met with Dr. Walter Virkus of Rush University Medical Center here in Chicago. He was great and said he’d do all he could to save my leg. We did a biopsy and found out the tumor was indeed periosteal osteosarcoma. Next steps…surgery.

Treatment: I had my first surgery April 8, 2004 to remove the orange-sized tumor I had on my right femur caused by periosteal osteosarcoma. The surgery was 7+ hours and Dr. Virkus and his team of specialists removed 9 inches of my femur bone, replaced it was a cadaver bone from a donor and inserted some metal rods to help support the femur (see MRI scan photo). I stayed in the hospital for around a week with a 17 inch scar running from my knee to my hip. I was released from the hospital and taken home where I was on crutches for 3 months and not allowed to walk with my full body weight. I had home health nurses, family flew in to stay with me and I began home and outpatient physical therapy.

I went through 3+ months of physical therapy to learn to walk again and get mobility. It was one of the most painful experiences of my life but at the same time, a great lesson for me to realize my internal strength.

I began to walk again with no limitations in July 2004. I had worked so hard that I could now walk without anyone even noticing that I had cancer – which was always important for me. I began to work out 3-4 days a week and things remained well until April 2005.

Recurrence and Metastasis: In April 2005, I went in for my one-year check-up and doctor told me that there was another small growth in my right leg and we would have to remove it. On May 5, 2005 I had a small follow-up surgery and the growth was removed and I was on crutches for 2 weeks and back to normal within the month.

Things remained well until June 2006 when my scans once again showed that a tumor had returned in my femur area, as well as a small spot on my pelvis. Since this was my second recurrence, I met with an outstanding oncologist (Dr. Paul Kent) at Rush University Medical Center here in Chicago. I underwent 12 weeks of in-patient chemo in hopes of shrinking the growths in my leg and pelvis. Once I completed chemo, we moved into surgery and I had the growth removed, as well as a bypass surgery on the veins and arteries in hopes of preventing any further recurrences.

After the surgery, pathology results showed there was no significant decrease in my tumors due to the chemotherapy I had just completed. It was discouraging; however you move on and do what you can. It was recommended post-surgery that I undergo radiation therapy. I underwent 5 weeks of radiation treatment and recovered fully in January 2007.

Things seemed great for a few months until April 2007 when I had my third recurrence. This time I had a spot in the soft tissue of my femur and two nodules on my lungs. I had VATS lung surgery on April 20, 2007 by Dr. Michael Liptay of Rush University Medical Canter here in Chicago. He was amazing and we were able to remove the two nodules without major complication. I healed up from the lung surgery and we decided to move forward with more chemo, this time more aggressive doses. We decided to leave the tumor in my leg as a marker so we could determine the effectiveness of the treatment. Mind you, I had 3 previous surgeries on the leg, so going in to remove it would be risky and proved to not be successful in the past.

I’ve undergone 6 months of the more aggressive chemo (outpatient, 5 days a week, 8 hours a day) and we had some successes (one tumor disappeared completely) and some loses (two more showed up). The results were mixed and I decided to stop the chemo treatments in October 2007. I began to recover for the next few months, building my system back up.

In February 2008, I went back in for another scan/check-up and we discovered I had a new lung nodule – my fourth recurrence and second in the lungs. The nodule was small and we monitored it closely and in April 2008 it had doubled in size; however still small about 1.5 cm. We also found a second nodule that was 4mm in size. Currently, I’m still monitoring the growth rate and making a determination when/if I want to take these out with another surgery.

Life now: My life is actually great. I still work full-time in a marketing division and enjoy everyday. I hang out with my friends, talk to my family daily and look forward to what the future can bring. The weather is great in Chicago and I can’t wait to enjoy the summer!

Thoughts and hints for new patients: One of my favorite quotes is “You have to accept whatever comes and the only important thing is that you meet it with the best you have to give at the time!”

Diagnosis: I found the lump in June and my doc told me it was nothing to worry about. So as it got bigger and started to hurt more I went back and then she sent me off for tests. I found out September 13 that it was cancer, and that they just didn’t know what kind. After losing my slides I finally found out what kind, and started chemo in December (Merry Christmas to me). What a present I got – I lost all my hair two days before Christmas.

Treatment: Well my surgery was scary. I had to learn how to walk all over again. And I had an 18 month old to take care of. I wonder many times why is this happening to me. I just was feeling better after having the baby, depression after having her, and now this. My treatment started in December, and it lasted for 6 months. I had to do two days of chemo with three weeks off, and then 5 days of chemo with three weeks off for six months or so.

Recovery: I had to have someone come into my house to help me learn to walk, which I hated, but did it anyways. I still don’t have full feeling in my leg and the swelling the docs say with never go away.

Recurrence: It came back again when I was pregnant with our second child. But we didn’t know that until he was 4 months old and it was the size of a grapefruit sitting on my groin. How I ever pushed him out (all nine pounds of him) and no one found the tumor is beyond me . This time the surgery caused my leg to be much worse than before, and now I had to try to help be a wife and mom to two kids while trying to figure out this whole mess.

Life Now: I can’t work because of this damn thing and at 28 that makes me mad. But on the flip side, I always said when I was little I wanted to be a stay at home mom and god gave me a way and I even get a disability check for it. Haha. I am not the person I was and I am more understanding. Life couldn’t have taught me what cancer has in such a small amount of time. But life looks different through cancer glass and I wouldn’t have it any other way.

Thoughts and Hints for New Patients: Well first you have to get mad in order to fight this thing. If you don’t then the “oh me” will keep you down. You need the anger to fight and fight hard. I laughed the whole time I was going through it both times. And I found someone who never once asked me how I felt, just knew by my voice, and talked to me like life was and is still moving around me.

Diagnosis: I first went to my family doctor in August of 1976. At that time I thought I had broken the arm. The doctor took one look at the x-ray and sent me to the cancer clinic. I was at the clinic on a Monday and had my first operation of many that Friday. At the time thought it was no big deal. Let’s just get on with curing it.

Treatment: The first four or five operations they removed the tumor and packed the hole with bone chips from my hip. That didn’t work. The next operation was to fuse my left wrist since it had become unstable. After the wrist had healed they removed a bone from my leg and replaced the radius. Then I started on my chemotherapy rounds. Took chemo for a year. My chemo treatment would last for seven days. Sorry but never did know what kind of
chemo I was given.

Recovery and Metastasis: I never had physio. I had to go back to school to learn a new trade. I had a recurrence in 1993 when I was 40. They amputated the lower part of the left arm at that time.

Life Now: My life at the moment is not to bad overall.

Thoughts and Hints for New Patients: Do research, ask questions, listen to what they are saying to you and keep a positive attitude.