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 diagnosed on May 22, 1996 at the age of 25 with osteogenic sarcoma of my right distal femur. My diagnosis came 2 days after a bone biopsy. My story goes like this:

In the summer of 1993, with visiting family in CA, a sudden sharp pain overcame me along the back of my right knee/thigh area. The pain came and went so I didn’t think much of it. Thought maybe just a strain or stepped wrong. Upon returning home the pain worsened and I figured better safe than sorry so I went to see an orthopedic specialist. After visiting 2-3 different orthopedic doctors a small bone tumor was revealed through x-ray and then confirmed by an MRI in April 1994. At the time it was felt to be a benign non-ossifying fibroma. With little knowledge about bone tumors my orthopedic, Dr Fletcher, felt it was best to watch it and wait. Seemed like nothing was helping, did PT, anti-inflammatories, and rested my leg as much as possible. Out of frustration I decided to just deal with the pain and swelling. Two years later the pain had worsened, becoming unbearable at times, causing me to return to my orthopedic. A repeat MRI showed slight tumor growth with irregular margins. So a biopsy was schedule for a month later, the longest month of my life.

On May 20, 1996 I had a bone biopsy done. Two days later on the 22nd I was diagnosed with high-grade osteogenic sarcoma of my right distal femur. The day of my diagnosis was a whirlwind of activity. I was off for chest x-rays, chest CT, bone scan, blood work, and met with my oncologist, Dr Weissman, in Latham NY. The following week I met with my orthopedic oncologist, Dr Springfield, at Mt Sinai Hospital in NYC.

Treatment: Two weeks after my diagnosis I had surgery to put in a port and started chemotherapy. Neo-adjuvant chemo was 2 cycles high dose Methotrexate with Leukovorin rescue. Which were 5 days in the hospital, scheduled 2 weeks apart. Then came 3 cycles of Adriamycin/Cisplatin combo (YUCKY!!!) administered at my oncologist’s office each 3 weeks apart, finishing that course in late August.

Limb salvage surgery was September 10, 1996. Consisted of radical resection of my right femur with osteoarticular allograft, patella replaced, and short head of my quadriceps muscle resected. I was in a long leg cast for 2 months and then a custom long leg KFO block brace for another 3 months. After surgery I spent 10+ months on crutches, started with no weight bearing then toe touch, to 75% in June 1997 and finally walked with a cane in July. Adjuvant chemo began in October 1996, ending with 3 cycles of Ifosfamide. Again 5 days in hospital given 4 weeks apart. On December 7th I turned 26. And on Dec 13th I finished my last chemotherapy. What a way to celebrate the holidays and bring in the New Year.

My hospital experiences were difficult. At 25, I was no longer a pediatric case so all my treatment was given on the adult ward. Which consisted of mainly dying elderly patients. Not a fun experience at all. My first 2 treatments were like living in a time warp. My second treatment ended with an early 1 am breakout. Couldn’t take it anymore. Felt like I was living in a fog in extremely slow motion. Just wanted to be at home in my own bed. The doc loved that wake up call. LOL! My last 3 chemos were at a hospital my oncologist visited. What a wonderful experience. The nurses treated me like one of their own. I had a private room, special meal requests, slept with my door closed, kicked out the maids, my doc wouldn’t wake me but rather do all his rounds then come back to me, he even made special trips to see me, I ruled the floor. I became the “queen of 3S.” At times it was lonely as everyone was working and carrying on their lives while I was fighting for my life. But I made it through. No worse for wear.

Recovery: Well, one could consider me a physical therapy “lifer” at this point. LOL! My therapy began in Dec 1996 and has been going strong ever since. Since my limb salvage surgery I’ve had 5 knee surgeries: 12/97 TKR (total knee replacement), 4/98 removed cement that leaked in TKR surgery OOPS!, 6/01 lateral patella release, 2/04 TKR revision – replaced plastic components to TKR, and my latest 12/04 – partial TKR, lateral release, and button on patella. [Click here to see my x-ray.] Can yah see why PT is still part of my life? Plus, in between I’ve managed to severely sprain my left ankle and a wild spill off my bike while off-road biking, all with a sprained ankle resulting in a rotated pelvis and tail bone that to this day is off about 1 inch to the right side. So I’ve managed to have a bit of fun that changes up my therapy needs. Takes the focus off this damn knee at times. My orthopedic oncologist says he’s ready to “take me out back and shoot me.” LOL! I love that guy. Not sure he realizes how much I appreciate all he’s done and continues to do for me. I’m his nightmare patient. He also says patients are discharged when there x-ray files weigh more than the patient, which is about true in my case. LOL! Guess someone needs to keep him on his toes. Right?

Life Now: The key is I am ALIVE. Life now is still filled with a lot of medical “stuff.” Most of my time is spent running to doctors appointments and dealing with long term effects of dealing with cancer. Although, I have two wonderful dogs Zephyr and Sheba, who I enjoy spending lots of time playing with. Needless to say I do not work. I did go back to school after treatment and have my BS in Biology graduating in Dec 2002. I also have an A.A.S. in Criminal Justice. Maybe one day I’ll get to use it. I’m thinking pharmaceutical rep. maybe? My passion is working with other cancer survivors, especially young adults. But I’m so not into going back to school to start over again. I volunteer at a local Gilda’a Club that recently opened. It’s like a second home to me, very welcoming and inviting. Which is adding purpose to my life.

Even with all the changes that have taken place in my life due to my cancer diagnosis I wouldn’t give it back. Sounds crazy but it’s true. The people and opportunities I have had over these past 9 yrs have been extraordinary. I’ve been places, done things, and learned more about myself as a person than I probably would have otherwise. My mom was my rock during treatment: living with me, carting me back in forth to treatment, caring for me day and night, and being my emotional support. My dad has been my rock after treatment: helping me financially by giving me a roof over my head, car to drive, and helping with medical expenses, while offering as much emotional support as a dad can. It’s because of all those people who took time out to help me during my cancer experience that I’ve made it this far. Some of my fun adventures have been – living with my gram in OH for 5 months and being with her during her death, several trips to Miami beach and cruise to the Bahamas, a trip to Ireland, several trips to CA to visit my older sis and her family (4 nephews and a niece). My most recent trip to see them was this past October (2004) where I witnessed the birth of my sister’s fifth child, my nephew Michael. More adventures include several yearly trips to OH to visit family and friends, summer trip to San Diego, getting to spend lots of time with my best friend Kristi and her husband Paul, and much more.

Thoughts and Hints for New Patients: My advice to you – Take one day at a time. Laughter is truly healing to the body, mind, and soul. If possible find someone to connect with who understands what you’re going through. Know that all your thoughts, emotions, fear, anxieties, etc., are normal. Listen to your body. You are the best indicator of how you feel and your best advocate. So ask the tough questions and don’t be afraid when necessary to demand answers. Don’t settle for anything less than what you deserve. Choose doctors who are not only top in their field, but are also warm compassionate souls. This will go a long way during and after treatment. Don’t stress over the little things. Set goals. No matter how big or small and cross each off when you have accomplished it. Keep a journal and/or scrapbook. Great for reminiscing and when need pick me up. Remember no one’s life is guaranteed. We’re just the special people whom got to learn this before it was too late. Live life to the fullest as everyday is a gift.

It is possible to live after an experience with cancer. Maya Angelou wrote “Surviving is important, but THRIVING IS ELEGANT.”

Update (February, 2009): Since I last reported not much has changed. I have undergone several more surgeries: 12/05 removal of calcification in popliteal area (behind knee). I fractured the allograft bone and there was loosening of the cement along the rod in my femur which led to surgery in 2/08 – removal of plate and screws in femur and allograft bone, revision to total knee replacement (TKR), and insertion of partial prosthetic femur and long rod extending up near hip joint. For some reason this surgery didn’t go very well. My body rejected the metal prosthesis which led to another surgery where they did another revision and cemented the rod in my leg in 4/08. I am currently waiting for my next surgery due to the loosening of cement around the rod in my femur. Not sure what my doc will be doing. I’m still going to physical therapy regularly and other maintenance dr. appointments. I’m praying that this next surgery will be it for a long while. I’m itching to get on with my life. I’m still not sure what I want to be when I grow up but I’m sure it will come. One of the best thing that has happened to me since my last report is that my pain level has drastically decreased with the Feb. 08 surgery and removal of the allograft bone. With the Lord’s help I am living each day as it comes. My spare time is spent attending church, bible studies and hanging out with a core group of special friends and of course my family and dogs.

I actually knew I had a tumor in my leg, because when I was 12, I cracked it while I was running. The specialist at that time said that it was benign and not to worry about it, because something that is benign would not turn malignant; so life went on. In January of 2003, my shin and knee were extremely swollen and I began to have daily pain that would even wake me up at night, but being the stubborn person that I am, I didn’t actually go into the doctor and complain until June 2003. Eventually I was referred to a specialist who (in August) said the best thing to do was a biopsy so we know what we were dealing with. A week after the biopsy I was told it was Osteosarcoma. I was actually told on a Friday and by Monday I had an Oncologist, was in the hospital on Wednesday having a catheter placed in my chest and was to report on Monday morning for my first round of chemotherapy. The first day of chemo was September 19, 2004. WOW what a week! The initial tests done were an MRI, CT scan, Bone Scan and many different X-Rays. It all happened so fast – I actually don’t know how I handled it.

Treatment: I had 7 rounds of chemo before surgery. The chemos were Doxorubicin, Ifosfamide, High dose Methotrexate with Leucovorin rescue, Cisplatin. I had about 3 weeks off before surgery so I would have enough strength to make it through. Surgery was on January 6, 2004. I had limb salvage surgery which consists of inserting a titanium rod into my femur, taking out my knee and replacing it with a prosthetic knee and removing my tibia and in it place titanium rod. Basically I am titanium from 3 inches above my knee all the way down to my foot. I was in the hospital for 7 days, pretty much drugged and was not allowed to bare any weight on my leg until March. Two weeks after surgery I reported back to my oncologist for the next 13 rounds of chemo. Same as listed above plus Etoposide. Out of the 13 rounds I was suppose to have I only had 5 because my body would know longer recover after each treatment. My blood counts would remain too low and the risk of infection was to great so my doc and I decided we would have to take the chance and end chemo. YEAH, that was actually a good thing as far as I was concerned. My last chemo was June 23, 2004.

Recovery: In March 2004 I began physical therapy — OUCH! I am still in it! I have lost a lot of mobility. I can not bend my knee past 90 degrees. I can’t make it completely straight. I can walk, but I still have a lot of pain so walking is not the easiest thing to do. I probably will never be able to run, jump, squat, kneel, crawl…anything having to do with the knee. I am still missing a lot of feeling through my shin and ankle, but that might not stay that way my docs are not really sure. To this day I continue to walk with a brace, because my knee will buckle pretty easily, especially when I am tired. I cannot bend it enough to go up or down stairs, but I am constantly trying and working on that. I end up with back and hip pain because I tend to swing my leg out to the side when I walk which messes up my gait pattern, so my PT works a lot on my back and trying to keep it aligned. Currently in PT, I am working on regaining my balance and coordination. I was to be pretty good at both those things, but now my PT and I fall over laughing when I try to do something new and I about fall over. It is pretty funny and entertaining! I actually like going to physical therapy. Even though it is painful I feel as though I am working on improving myself so it is rewarding and I feel good for going!

Every three months I have my CT scan of my lungs and X rays done of my leg to check. Knock on wood – everything so far has been great!

Life Now: Things are definitely different now. I can’t say in a bad way though just different. I miss things that I use to be able to do like playing volleyball, sitting in the back seat of the car (I can’t bend my knee enough now to sit in the back), and jumping or walking without pain. But I have learned so much more out of life. I enjoy going to work. I enjoy friends and family. I enjoy who I am now and what I have accomplished with my life. I listen to friends or family complain about things that now I feel are just not worth thinking about. I listen to people at work complain about being there and my thought is work is the best place on earth. I was off for so long, still not back full time, but I am happy that I am able to work and not sleeping all day because of medications, or stuck in the house because I was Neutropenic, or (worse) stuck in the hospital for weeks at a time because of infections, low blood counts or blood pressure being so low that everytime I would put my head up I would pass out. I don’t miss those days, but those days taught me how to cherish what I do have in my life. To live each day – not in the past and not in the future. Your life does change, and after treatment is almost as hard (if not harder) to deal with than during treatment, because your life does change. But you learn how to live again, hold your head high, and yell that you are a SURVIVOR!

Thoughts and Hints for New Patients: Just take each day as it comes. I thought that once I knew what to expect from the chemos that I would be able to plan for it each time I had a repeat. But the more chemo I had the more different my body would react to it. I would never know what to expect (in my situation) even though it was the same chemos same doses. At the beginning I tried to be “strong” and fight through the nausea, vomiting, fatigue and all the other wonderful side effects but then I realized there is no reason to fight through it. TAKE MEDICATIONS to help RELIEVE THE EFFECTS!!! If one doesn’t help, ask for another. I definitely ended up with my favorites! I also learned to listen to my body. If I was tired, I slept. If I was hungry, I ate. The best thing is try to eat healthy, but in my case healthy foods would just make me sick. I always craved McDonald’s cheeseburgers and Taco Bell Tacos, so when I was able to eat, that is what I ate. It was better to eat something instead of nothing, so let your body tell you what it needs. And probably most important: talk to your doctors, feel comfortable with them, you see them a lot. Ask questions and get answers. Have a way to contact them (and the chemo nurses too), they become a huge part of your life – mine still are!

Update (February 2009): Since diagnosis in 2003 and surgery in Jan 2004 things have been challenging. A year after my limb salvage I had to have another surgery on my knee which was for replacing the patella- in other words putting a plastic button between my knee cap and the titanium knee. We thought that would fix the constant pain that I was in, when in actuality it solved one problem just to realize I had more than one spot that was painful. Struggled through that recovery and was still not getting better in regards to pain or mobility so after another year of tests and scans it was finally determined that I had a cyst growing behind my knee. The more the cyst grew the more it compressed my nerve against the titanium, so once that was discovered I had another surgery to remove that and to explore the functioning of the nerve that was being squished. That was in Nov of 06. Once again started a different routine for PT and worked hard at regaining some mobility, then a few months later during a routine ct-scan a spot was found on my lung. Everyone was convinced that it was “just a spot” because it had been so long since I had had treatment and the possibility of it being a met that far along was small. We watched it and a couple months later at a follow up ct scan it doubled in size. My doc didn’t like that it was growing although still thought it was nothing to worry about but he wanted to take it out. So in March 07 went in for another surgery and had the spot removed. Found out a few days later that it was definitely a MET, but clear margins were obtained and at this time that was all that needed to be done. A month after that had another surgery on my knee to remove the scar tissue in hopes that would help decrease my pain.

So I guess to some it up I have constant pain in my knee. I can only bend it about 60 degrees on a good day and have tons of problems with walking do to pain and the inability to bend my knee. We are not sure why I have so much pain.

Throughout all of that though and the continued doctor visits and surgeries and questions I have met the love of my life and we married in 08. We also found out that we are expecting a baby in March 09, which came as a COMPLETE shock to us because I was always told that due to the chemo I probably would not have kids. It goes to show that things just happen especially when you least expect it. Pregnancy has been hard because of course the pain is still there and now I can not take any of my pain medications and there have been some new issues with my leg that I think are effects of what my body is trying to do to support the baby, but overall the baby is looking healthy and growing like a weed already–just can’t wait for him to be here.

All of my docs talk to each other and they continue to support me and my situation to the fullest. I feel so confident that they are all working together to make sure that the baby gets here safely and that my health and leg well being is all part of plan. I think it is VERY important to make sure you have a good relationship with you doctors and that you are able to talk to them about anything.

Diagnosis: I was 25 years old and working as a police officer in the city of Boston. While making an arrest, I struck my right knee on the ground. I felt a sharp pain shoot up my leg. I was surprised how much it hurt, because I didn’t hit it that hard. I finished the day and went home. I returned at midnight for overtime and my knee seemed fine until I felt more sharp pain while stepping down a small wall and by morning I noticed it was swollen. Best thing I probably did in my life was to write an injury report that day, but naturally I continued to work a double shift. The following day I went to the emergency room. No x-rays were taken and I was told I had a deep bruise and it would be better in a few days.

I returned to work 2 days later and my knee felt better. After working the day shift, I was ordered to work a double shift due to the gas company being on strike. I was on foot from 4:00 pm and by midnight my knee was so swollen my pants were skin tight on my right leg. I returned to the emergency room and I knew something was wrong when the x-ray tech and Dr. asked me several time if I ever broke my leg before and I did not. I’m sure the doctor knew what it was but referred me to orthopedic doctor for a follow up. I was given crutches and told not to go back to work until I saw an orthopedic doctor.

The doctor they referred me to was on vacation. About a week later my knee was feeling better and work had called to see when I was coming back. That same day an hour or so later a doctor from the emergency room called my house. He was calling to make sure I had a follow up with my knee. I was a bit surprised they called and after I explained I could not get an appointment and I was feeling better, I was placed on hold. When he got back on, he had said Dr. Griffin will see you at 1:00 pm, it was noon time. It was obvious that I had something more then a deep bruise.

I met with Dr. Griffin at St. Elisabeth’s Hospital in Boston; he was very nice and wanted to take some more x-rays. I could hear him in the hallway asking another doctor. to look at my x-rays. I had a feeling what was about to come. He told me I had a bone tumor and I was in for a major knee operation and maybe chemo. I don’t know who had it worse me hearing that news or him being the one to have to tell it. When I left his office I got my first “you got cancer” stare from the receptionist, while she was making the call to get me into my MRI later that day. I was later referred to Mass General Hospital to see Dr. Henry Mankin. Dr. Griffin told me I could not be in a better place then Boston for what I had.

Doctor Mankin helped pioneer the bone transplant and founded the New England bone bank. Knowing I was seeing the best made all the difference; there was no worrying about getting second opinions or being misdiagnosed. I met Dr. Mankin on March 11, 1993; I was the first patient that day. I was put in a room and one by one it seemed like 5 or 6 of Mankin’s fellows came in. I remember the room being full with all these doctors and then when Dr. Mankin came in they cleared a path for him. He told me they were going to take very good care of me and I would need an operation and sent me down for a needle biopsy. They determined that I would also need chemo.

Treatment: I started chemo within two weeks it was not much fun. I did poorly on my first two treatments, my blood count was low and I ended up in the hospital for a week. I don’t remember all the names of the chemo and did not really ask that many questions. I just did what they told me, I knew I was in good hands at Mass. General Hospital at that time they saw a good portion of the sarcoma cases in the country and many from around the world. They stopped the chemo and did the operation. After a few weeks I started new chemo it was all I remember is it was 3 days long and being very out of it due to the ativan. I was told I would have to do six of these 3 day treatments. I was somewhat relieved because the one I started was going to be well over a year long. Naturally I asked how soon can I come in and get them done. I was told no sooner then 21 days and said ok book me every 21 days. It was hard because of the operation and not being able to walk and having a good amount of leg pain.

Recovery: When the cast was removed I began physical therapy. It was painful in the beginning and ended up getting a burn on my knee cap from the heating pad at PT. After several months, I was finished chemo and PT and was walking without any sign of a limp. I returned to work in June of 1994, mostly behind a desk doing accident investigations.

Life Now: In 1995 I was involved in a head on car accident while working and injured my neck, torn left rotator cuff, broke left wrist, injured back and impact on legs caused arthritis to set in my right knee. I went back to work after a few months off. I did well for several years and was still able to be a police officer. I just did most of it from my office. It was hard not being able to fully function in life and in my job.

The biggest life lesson for me was I put work before my health. I continued to have back problems; my knee was killing me from the arthritis and did not find out about the tear in my shoulder until 8 years after the accident. I had a total knee on 4-11-03 and knew the day I woke from the operation I most likely was not returning to work. My leg swelled up real big after my sister’s wedding and after going to the emergency room they found a swollen lymph node in my groin. They removed it when they repaired my shoulder.

To this day still having a lot of pain and swelling problems in my knee. My back is not that great and the shoulder still gives me a lot of problems. I retired from the police department in 2004. I was married in 1997 we have two girls they are 8 and 9 years old. I am very luck to have them because I was told due to the chemo would not be able to have kids. I have also been lucky to be home with them as much as I have.

Thoughts and Hints for New Patients: Ask a lot of questions and write them down, because you will forget to ask something. And keep a copy of you medical records. I highly recommend being treated at a sarcoma center.

From talking to other sarcoma survivors I have learned that everyone deals with this different. For me I got dropped off at chemo by my girlfriend, and as soon as it started I had her leave. It was hard to tell my family not to visit me during treatment, but it made me feel better not having them come in and stare at me. If it make you feel better having family or friends visit, have them come in. I only ate the food the first and second treatment, by the third chemo the smell of chicken soup coming down the hallway would make me get sick. So after that I did not eat of allow any food in my room. Within a few days or so I was able to start eating again and would eat what I craved.

It’s normal for your moods to go up and down. Just when you start to recover and feel better from a treatment, it was time to do it again. I declined the extra round of chemo for good luck as I did what they recommended. The internet was not around back then so if you really want to know every thing about sarcoma it is much easier to do your own research.

Luckily I met Mel. She was my research – she was about a month ahead of me and was on the same chemo. Joining a support group like abc-survivors.net is great, you can get all your questions answered and make some real friends who can understand what you are going through because we have been there done that. There is no right or wrong in how you live as a patient or survivor. I do what makes me feel better about my situation. I never used the c-word and would cringe when I heard someone talk about their CANCER and use the word CANCER. It was hard to hear that, it took along time for me to realize that’s what works them not me. It is now part of my vocabulary from time to time.

Living strong since 1993

Osteosarcoma at the Proximal Femur
Age at Diagnosis: 13
Date of Diagnosis: January 1991

Diagnosis: I started having pain in my right leg in 1991. It felt like a pulled muscle, but instead of getting better, the pain finally got so bad I came home crying one day. My family was the type to not go to the doctor unless something was serious. I went to my family doctor and he recommended x-rays. He told my parents, “There’s something there, it could be an infection, but it looks like cancer. You need to go to a specialist.” He recommended Mayo Clinic in Rochester, MN, where I had an impressive amount of tests, but still no one was 100% sure. People kept trying to reassure me it could “just” be an infection. I finally was scheduled for a Biopsy. This all happened VERY quickly. I’d say within one week, maybe a little longer I was in surgery. During this time period, I was more in shock then anything. I didn’t know what to think, but I knew I wasn’t giving up. I knew there was nothing I can do but take it one day at a time.

Treatment: I started a high dose regiment of chemo very quickly. I can tell you I had Methotrexate, Ifosfamide, Adriamycin, and Cisplatin. I believe it was 3-5 days off, then Methotrxate, then 3-5 days off, then Ifos. This would repeat for a couple weeks, then I get high dose Adriamycin. Only 3 or 4 doses of Cisplantin. I had chemo for 14 months, only pausing for blood counts. It was a harsh schedule. The only time I got really down was when I had a friend in the hospital with the same cancer, passed away from a reaction to the Adriamycin. I also nearly gave up during my last dose of Adriamycin. It was my last scheduled dose of this drug and my white blood cell count when down to nothing. I got put in a clean room. That was the only time I had doubts of my survival. It didn’t rebound and I had no reaction to a blood cell booster. After about a week they tried again and I started recovering.

All the rest of the time I was cheery. The nurses were great. We used to play jokes on each other all the time. Once I came back from PT and my bed was gone with just a blanket and pillow on the ground and a note saying “budget cuts”. The doctors there were also top notch. No ONE doctor was in charge of my treatment. There was a team of oncology doctors in charge of treatment, and a team of surgical doctors headed by Dr. Franklin Sim, one of the best doctors in the world for doing what had to be done later. I really thought this was a great approach to medicine.

I should have lost my leg, but they tried using an allograft that had natural bone, re-attaching muscles and having my bone fuse with a donor bone. I don’t know all the details of this first rebuild-It didn’t last long. Massive infection started and quickly built. I had IV antibiotics. They also used a scrape and flush method on my leg. I had three surgeries in three days-exhausting. Each time they could scrape the bones and flush with anti-biotic solution, leaving the wound somehow partially open. I don’t know how they did that; I didn’t get to see it because it was wrapped up. Meanwhile during all this, there was a concrete(?) block spacer implanted in my leg laced with anti-biotic beads.

I eventually had a second version of the rebuild, more extensive, but still rarely done. It had a fundamental weakness though. The upper femur was donor bone, the mid and lower femur were my bone. There was a brace on the outside of the two bones that was strapped to them to keep them together. A metal rod when from my hip (partial hip at this point) to my mid femur. This worked well for a couple years.

In 1995 I tripped at college and the bone cracked where the metal rod terminated. It didn’t hurt, and held together long enough with the internal support brace to schedule another surgery. 10.5 hours under. I now have the same set up as before, except with much less of my original bone. The bones fused perfectly. My hip is a FULL hip replacement now. The metal rod extends from my hip ball down to my knee and is anchored there. It required “updating” in Nov. 2006 due to wear and what started to be frequent dislocations.

Life Now: Since my last surgery in 2006 I’ve had little problems. With that much metal in my leg it’s only natural that I have some discomfort once in a while, but nothing severe. I’ve been able to go sledding, biking, swimming, hiking, camping, spelunking (cave diving), boating, just about anything that doesn’t involve running. I can kind of jog with a bad limp, but I’d pay for it the next day, so that rarely happens.

The only long-term issue I have with this implant is the hip replacement. Even though it had been recently updated, it is expected to last about 20 years, at which point I will have to have another hip replacement. My outlook on this is they are making advancements in plastics and ceramics all the time. The next hip I get may last 30 years! I should also mention that I walk un-aided. If it’s sore I’ll use my cane, but I hardly need that anymore. There has been no sign of the “c” bug since 1992.

Career is normal for me now. It sucks sometimes having to use vacation days for check-ups, or because your hip bothers you at 32 years old. But that’s a very small price to pay to be alive and healthy. My family life is very good. Though I’m single and don’t really have a family of my own, I’m very close with my parents and brothers probably more so then if I didn’t have to fight for my life. I have a lot of hobbies – too many for the time I have .

I enjoy life. I also think that “we”, as survivors, see things different than others. Things are just a little bit more beautiful, just a little bit more precious. I love going boating and camping and try to stay active. Life is so normal for me in the fact that I have trouble dealing with my limitations when they do come up. I have a habit of pushing myself TOO hard at times.

Thoughts and Hints for New Patients: Stay patient. Every day through treatment is another day closer to being done with them. Keep a good attitude. Laugh loud, love much, and live strong. Do whatever it takes to keep a happy positive attitude. And remember, a lot of people have it worse then you. In some ways you are lucky. I’ve only gotten active again in the community after meeting Christine Schauf. She was the most selfless and caring person I have ever met. She was also tough as nails and never gave up in the face of incredible odds. She helped inspire me to help others, to be an inspiration for those just diagnosed and still going through treatments. I want to show people that it can be done. You CAN have a normal, long life. I’m proof of the fact that CANCER IS NOT THE END OF THE WORLD. It can be the beginning of a more self aware journey through life.

Never give up, and never loose hope. Each day through treatment is one day closer to being done with them. You have to keep laughing and keep your spirits up during treatment.

“Until there is a cure…Peace, Love, Hope” –Chris Schauf