I was diagnosed with osteosarcoma in February, 2005. I just underwent 10.5 months of chemotherapy in three different locations. I was a “normal” law school student in 2/05 but I had some pain in my groin that just wouldn’t go away with physical therapy. I was diagnosed with a high grade osteosarcoma on my right pelvis, the acetabulum to be specific. I was diagnosed by the good people at Tulane University Hospital and Clinic (before Katrina wrecked the place – what a sad, sad, day that was for me when I heard of all the people in the hospital dying as a result of lack of power and resources). I got a second opinion at Memorial Sloan Kettering Cancer Center in NY, NY. I saw a nasty doctor (the only nasty doctor I have dealt with through this whole ordeal) and she indicated the seriousness of my illness. I wanted to do my chemotherapy in New Orleans and Los Angeles, where my fiancée and I were planning on moving after graduation from law school which was to happen to in May 2005. She told me that it was imperative that I do the chemotherapy in Philadelphia, where my family was, so that they could provide me with support. This doctor also told my father that my chances of survival were terrible because the osteosarcoma was on a short-bone, my pelvis, and not a long-bone – the most common, and curable place where osteosarcomas are found. She told my dad that my chances were bad because the cancer was extremely close to the trunk of my body. My father never told me that she told him this until long after this visit. After leaving her office I vomited repeatedly (something I would have to get used to during my chemo). I felt doomed!
Upon returning to New Orleans, I had a decision to make…whether I would go to LA or Philly. I started my chemo in New Orleans and the first cycle of adrio/cisplatin really hit me hard. It was during this time that I decided to go to Philadelphia and not to LA. My fiancée was taking the CA bar exam and she needed to be in LA to do this. I decided that I would complete my two rounds of chemo in New Orleans, graduate from law school (which I did, in the top 10 percent of my class, getting a 4.0 that semester which I was going through chemo), move to Philadelphia, have surgery and move to LA to finish my treatment. I thought to myself, screw that nasty doctor, I’m not going to let this thing beat me, I’m going to be it. That was my attitude throughout the whole thing. When I was told I had cancer, my initial reaction was not “why me?,” it was, “what do I need to do to get this thing out of me and beat it, so it will never come back.”
Well, after two rounds of chemo at Tulane, and graduating from Tulane Law School, I moved to Philadelphia (where my family was from) to have surgery with Dr. Richard D. Lackman a renowned limb salvage specialist. He was very confident in his abilities and upon meeting him and him looking at my most recent CT and MRI studies he told me “this tumor isn’t so bad…you’re going to be able to walk again.” He then indicated that I needed to do another round of chemo to shrink the tumor even more…THANK GOD THE CHEMO WAS WORKING (throughout my travels with this disease I have learned that the chemo doesn’t work with everybody and I was lucky). I went through another round of chemo at Pennsylvania Hospital — this time it was outpatient as opposed to inpatient chemo I received in New Orleans. During chemo, I lived a relatively normal life, even though I was sick as a dog. I attended my brother’s wedding, was the best man and delivered an awesome “best man speech.” My fiancée, bless her heart, was studying for the CA bar in LA, but she traveled to Philly to visit me as much as she could.
After my third round of chemo was over I scheduled to have surgery — an internal hemi-pelvectomy (basically they took out 3/4 of my pelvis and left the top of my hip bone and basically tied them together…the muscles, over time, were supposed to scar in and form a “socket” for my femur b/c the real socket was being taken out of me. A week after my surgery, I was still in the hospital, Dr. Lackman visited me and told me that I had 100% necrosis (this was a godsend b/c it indicated that my long-term prognosis was excellent, 90% chance of survival). He also said that the chemo worked so well that my bone had grown back over the dead tumor and if he didn’t know better he would have thought that my pelvis was healthy. He said maybe one day in the future when they know more about this disease that they might not even need to take the pelvis out. I spent 2 more weeks in the hospital and got the hell out of there. I hated hospitals at this point and was ready to be home. I was still in a whole lot of pain b/c the surgery was major. I was on crutches, but it hurt to do anything, sit, stand. I couldn’t walk without the crutches.
I completed another round of chemo in Philly. I had a major setback after getting my last dose of high dose methotrexate — the chemo settled in an open cavity where liquid had settled in my body and began attacking my GI track. I had terrible diarrhea and was hospitalized for two weeks, 10 days of which I was not allowed to eat. This was the low point of the whole process. After a week and half of recovering after getting out of the hospital I was given the go-ahead to move to LA to finish my chemotherapy with Dr. Sant P. Chawla a world renowned sarcoma specialist (he pioneered the Adriomycin/Cisplatin/Methotrexate trio of drugs to fight osteosarcoma and is a major advocate of also using High Dose Ifosphomide (which I did not receive). I completed two more rounds of chemo with Dr. Chawla at his outpatient offices. His system was the best I experienced. They had portable pumps that would inject the chemo over a longer period of time so the side effects would not be as harsh. By that time I had had so much chemo that my body didn’t care how slow the chemo was being infused, I still got bad nausea. Throughout the whole process there was a wide array of anti-nausea drugs prescribed to me, but the best thing that I used was not prescribed, it is illegal (but should not be)…marijuana. It was the only thing that provided me with relief from the terrible nausea I experienced.
I finally completed chemo in January of 2006 and now I am on the road to recovery. I was a very lucky person that the cancer never spread, and that I had such a good tumor response rate, in fact I had the best response possible. Throughout this time I have met many wonderful people including nurses, doctors, and fellow patients. I feel so lucky to have met you all…you, as well as this disease, have changed my life for the better. It made me value every day and cherish it because it might be my last. I am currently going through physical therapy so that I can walk again. I have a 2.5 inch lift in my right shoe because my right leg is 2.5 inches shorter than my left. I am finally walking with only one crutch (after being on two crutches since my surgery in August). My doctors told me that I would never be able to ride a bike, but believe it or not, I am currently riding an exercise bike to get in better shape (and to strengthen my leg while I am awaiting Medi-Cal (state based Medicaid) to authorize my physical therapy treatment. If anybody has any questions regarding insurance, I am a veteran of the state health insurance systems (having procured medical insurance provided by the state in both Pennsylvania and California) as well as the federal government’s welfare system (because I am “permanently disabled” until 2007 I am currently receiving Social Security Disability, and SSI).
I really believe that I had such a good response rate because I had a very positive attitude. Throughout this whole ordeal whenever I would feel bad for myself I would tell myself that there were people worse off than I, I was lucky to have detected the disease so early, and to have access to such great, world-renowned doctors. I am proud of the way in which I dealt with the adversity. I fought hard and that is why I’m here today. The mind is more powerful than the body is extremely true. I had great support from my family as well as my fiancée’s family. If you are having a tough day going through the chemo, just know that it will be over one day and the days that you don’t feel bad from the chemo TAKE ADVANTAGE AND LIVE LIFE TO ITS FULLEST. We are all lucky to be here, and we are lucky to be living in this day and age where the medical technology is impeccable. If I had contracted this cancer in 1980 I had a 10 percent chance of survival…today I have a 90 percent chance of survival (and if I didn’t have 100 percent necrosis I would still have a 70 percent chance of survival).
If you are in New Orleans I would suggest you visit Tulane Hospital and Clinic (now located at the Lakeside branch). Dr. Scott Wilson is an excellent orthopedic oncologist (he discovered the cancer and basically saved my life). Dr. Raja Mudad is an excellent oncologist, even though he is not a sarcoma specialist — I was told that Houston’s MD Anderson Cancer Center is an excellent place as well. If you are in Philly — Penn Orthopedics and Penn Oncology (Dr. Lackman and Dr. Staddon/Dr. Hartner respectively) is a great sarcoma institute. If you are in Los Angeles — UCLA is great and I would not go to anybody other than Dr. Chawla (he is very aggressive, but he is an innovator and is extremely knowledgeable and has a great bedside (or seatside) manner. I still have a long road ahead of me. I am not out of the woods, I never will be. Last month my doctors viewed my most recent CT scan and found a calcification in my muscle in the right pelvis. I had to have a needle biopsy and fortunately it came up negative for being a tumor. There is a possibility that it is a tumor, only time will tell, but it is more likely that it is part of the healing process. I am going to have to live with this for the rest of my life…so I tell myself to live it up and value every day.
If anybody has any questions about my experience (or wants advice, or just a friendly voice who has been “through the fire” to talk to) please feel free to contact me at firstname.lastname@example.org