He scanned, x-rayed, scoped…you name it, he did it.  On the very last day, he opted to run a bone scan to see if he could pinpoint the reason for my now phantom (as in gone) pain.  During the bone scan, my tumor was found.  Of course the x-ray tech couldn’t tell me that; she simply told me to get it checked as it wasn’t normal.  As a side note…no cause was ever found for the original kidney pain.

Off to the ortho (Dr. Robert Fain) I go…after all, I thought I had a knee problem.  He says, “You have to go to M.D. Anderson.”  I’m in utter disbelief!  For what?  I thought this was just arthritis.

Dr. Fain paves the way for me to get in to M.D. Anderson, where my case is picked up by the Chief of the Sarcoma Clinic, Dr. Robert Benjamin. I’ve come to truly love this man.  More tests.  Everyone who is on the web page knows about the tests.  I’m going to glow & poop in technicolor for the rest of my life!  The bone biopsy is not specific.  They can only tell that it’s a spindle cell sarcoma, not the specific “make & model”.

Treatment: Chemo is begun on 6/30/2000, and my hair is gone three weeks later.  Many rounds of chemo ensue until, in September 20o0, I am scheduled for surgery.

Dr. Kristi Weber is a great doctor, an excellent surgeon & the best cheerleader there is!  She performs an allograph on my right femur.  So now I have a little over 5 inches of someone else’s femur bone in my body.  I’m now to be completely non-weight bearing until the two bone grafts heal.  This ends up being 13 months…bear in mind that I’m an overweight 45 year old woman by this point.

In November 2000, during my monthly appt. Dr. Benjamin comes into my exam room and smiles at me.  For the first time since I’ve been his patient, he is smiling.  I start to cry.  Maybe I’m going to live through this after all. He tells me my tumor is MFH (I’ve have lots of words that fit those initials – can’t put any of them here tho!).  I’m told this type of cancer in the bone in someone my age is very rare.  Woo-hoo, lucky me!  He tells me there will be more chemo, inpatient & outpatient.  And that 2001 will probably suck, but 2002 will be great!  2002!!! Up till this point, no thoughts had strayed that far ahead.

The new, tougher chemo regimen starts and he’s right, it still sucks…until, in April 2001, my bone marrow dictates that there is to be no more chemo.  The other thing that has been dictated is that I have to have another surgery.  The original one has not healed.  This time, my fibula is transplanted to my femur.  The original metal brace is removed & a longer one is put in…along with 13 screws…on an Xray, I look bionic. But I still have my leg.  Since there is no chemo to interfere, the leg finally heals. My gift for my 45th birthday is that I’m allowed to walk on both legs!

Life Now: My other, ongoing gift is that I am here.  I am writing my story.  This month – April 2009 – is my 8th anniversary off chemo.  I’ve had no recurrences. I have come to believe in Guardian Angels (remember that phantom pain?) and the people at M.D. Anderson.  Dr. Weber has moved on to Johns Hopkins and I truly miss seeing her.  There’s just something about the people who save your life that you never get over.

Malignant Fibrous Histiocytoma at the distal femur
Date of Diagnosis: June 2000
Age at diagnosis: 44
Location: Houston, Texas – USA
Surgeon: Kristi Weber
Oncologist: Robert Benjamin

Diagnosis: I was first diagnosed in November of 2004. It was Sunday morning and I went for a10k run as I do every three days of the week. After the 6k, I felt a sharp pain in my pelvis. They did an x-ray on my pelvis and then asked me to go and see specialist. One week later I was asked to have an MRI of my pelvis.

Three weeks later, I was told I have cancer. At first I could not believe what I heard. Then I knew I had to deal with the reality at hand.

Treatment: I was put on chemotherapy, five chemo sessions before surgery. The chemo just destroyed my body; it made me so weak, I thought I am going to die. Once I survived the chemo, I had to go through surgery. My surgery lasted for 18 hours.

Recovery: After the surgery I stayed for two months in the hospital and then for a year on a hospital bed in my house. After I went through some rehab, I was able to take my first steps in one year and half. That is when I realized my life has changed forever.

Life Now:My family and friends say I am strong person, but I went through to adjust to my new life was easy for me. There is nothing I enjoyed like jogging and I cannot do that now. I have to use a cane to walk. Then I read a book called Tuesdays with Mary. It is a book by Mitch Album. Life is what you make it to be. I am a much happier person today. I went back to work after three years; I drive with my left leg and I look at things as if they are normal. I do not give myself the title of a disabled person, because I am an able person. I will do my best to live my life to the best of my ability.

Diagnosis: In the summer of 2002, right before my junior year of college I began having pain while working out. However, I couldn’t remember an incident where I had injured it. My Mom is a little overprotective (which was a disguised blessing!) and she suggested I have it checked out before returning to school.

I went to my local orthopedic surgeon who took an x-ray. He said he saw a cyst in my bone and wanted to get an MRI to get a better idea of what it was. After the MRI, he was still using the word ‘cyst’ but directed me to an orthopedic oncologist to have it looked at further. At the time I still had no idea what was really going on. I figured I would see this specialist doctor, have surgery to remove this cyst, and then head off to college.

Once arriving at Rush University Medical Center, Dr. Gitelis (orthopedic oncologist) suggested I have a biopsy to see what it was. I had the biopsy and was told 3-4 days later that I had been diagnosed with MFH sarcoma, which is a Malignant Fibrous Histiocytoma. MFH is a soft tissue sarcoma but mine was found inside my femur, which I’m guessing is rare since I have not met anyone else with what I have.

I honestly did not believe that cancer was a possibility until I was told I had it. College students don’t get cancer, right? I believe the first words out of my mouth were that I didn’t want to die. I didn’t realize that people actually survive cancer.

Treatment: My treatment involved 6 rounds of chemo, surgery, and then more chemo. I started off with cisplatin, doxyrubicin, and methotrexate. After 6 rounds I had limb salvage surgery on my left leg, had 6 inches of my femur removed, and had a modular oncology prosthesis put in. My tumor necrosis rate was good but not great so my doctors decided to switch my chemo regimen to ifosfomide and etoposide.

I hated going to the hospital, but knew that is where I needed to be to get better. I loved the nurses at RUSH and they made each day there bearable. I wouldn’t have survived without them. I spent 182 days in the hospital and my Mom was with me for all 182 days. I couldn’t have done it without her either!

Recovery and Life Now: I am now almost 5 years in a disease free state. I work for the American Cancer Society and I get to help plan events and raise money for cancer education, research, and support. Since my cancer diagnosis, I have a new passion for food and love to cook and try new restaurants in Chicago. I cherish each day that I don’t have to spend in the hospital and I realize what is truly important in life.

Thoughts and Hints for Patients: When looking back at my cancer experience, if I had to do it all over again I would. It is a long hard journey that no one should have to go through, side effects you wouldn’t wish on your worst enemy, and yet at the same time you come out a better person in the end with an incredibly different outlook on life.

Fibrosarcoma at the Nose
Age at Diagnosis: 20

At 20 years old, life was smooth sailing. I was a junior at the University of California at Berkeley, a confident, athletic, successful student. Some even considered me handsome. I was living life on “easy street.”

But that year, several people began to ask if something was wrong with my nose. My right nostril appeared to be flared out. I eventually took notice of a bump pushing against my right nostril, and when it didn’t go away, I made an appointment with a doctor. After telling me it was probably a pimple, when it didn’t disappear three weeks later, he finally suggested a biopsy.

It turned out that I had a tumor, a rare fibrosarcoma. I would later discover how lucky I was that I got the right diagnosis, given how few of these tumors pathologists see. The bulk of the tumor was removed during the biopsy, but I underwent surgery to excise any remaining tumor cells. Fortunately the procedure was minor, and with only a few sutures, I returned to classes looking like I had been in a fight with someone, not something.

But six months later, I discovered a new lump in the same nostril. Then my cheek began tingling. Numerous specialists confirmed that my previous, supposedly unthreatening tumor had procreated a horrific, life-threatening malignancy. Prescribing more surgery, my doctor warned that I might lose part of my nose, but his main concern was saving my life. I suppose I was too young to contemplate dying, but the notion of disfigurement was devastating.

I awoke from surgery to find that half of my nose had indeed been removed, along with half of my upper lip, muscle and bone from my right cheek, the shelf of my eye, six teeth and part of my hard palate. My doctor promised to make me “streetable” before I left the hospital. What I didn’t realize then was that this was his way of preparing me for a life of disfigurement.

As I re-entered the real world, I noticed adults staring and children pointing—and sometimes laughing—at me. My hospital room had protected me; outside of it, I was vulnerable and exposed. Of course I cared what other people thought of me; I relished the admiring looks the old Terry had received. Now I was petrified of potential reactions to the new Terry.

During the following months, I encountered many friends whose occasional and inadvertently negative reactions left an indelible mark on me. Even worse, radiation treatments were shrinking my facial tissue, magnifying my deformity. My self-esteem sank increasingly lower, and I constantly sought reassurance from others: “Do my looks bother you?” “How could you like me?”

Five years and 20 reconstructive surgeries later, I was still plagued with insecurity. During my last procedure, I met a woman receiving treatment at my hospital. We began dating, but after hearing me ask—for the umpteenth time—how she felt about my looks, she ripped into me. The bulk of my problem, she informed me, was not my physical appearance, but my emotional insecurity. Her honesty helped me realize that my mental and emotional scars were far more disfiguring than my physical ones. Once I got over the devastation that she was no longer interested in me, I began to realize how lucky I was that she had highlighted my greatest weakness. With a fresh perspective, I realized that surgery wasn’t something I could control. What I could control was focusing on rebuilding what was inside.

I began examining myself from the inside out and used prayer and support from loved ones to boost my spirit and self-esteem. I volunteered at The Wellness Community, a cancer support organization, and discovered that helping others is great therapy: I felt progressively better as I offered inspiration and hope to those coping with cancer. With time, my emotional pain subsided.

Altruism seemed to be the greatest form of therapy. I began to feel better about myself as I realized that I could bring tremendous inspiration and hope to those coping with cancer. Over time, the pain I felt from being an outcast subsided.

We all wrestle with insecurity. For me, it took something devastating to recognize that battle scars make people interesting and wise; trauma helps us appreciate life and prepares us for its inevitable adversities. Today I am thankful for who I am—a much stronger and wiser person than the old Terry. I am grateful for my experience because I appreciate every day of my life, and I am more forgiving and tolerant than ever before. What I learned I hope to teach others.

• Each of us has the ability to take control of our lives. We have to learn to focus on what we can control, and stop worrying about what we cannot control.
• We owe it to ourselves to surround ourselves with people we trust. Without trusting my family, friends, and medical team, I wouldn’t have had the positive attitude necessary to carry on.
• We can all face our challenges, but we need to focus on the most pressing issues so we don’t get overwhelmed with all that we want to improve about ourselves.
• And finally, we need to be aware, alert, attentive and more accepting of one another, because we never know in life who or what will impact our lives and inspire us to achieve things we never thought possible.

I remain cancer-free 20 years after treatment. I published a book about my triumph in February 2006, called At Face Value: My Triumph Over A Disfiguring Cancer. I am also a motivational speaker, and though my primary business is consulting, speaking has proven to be the most therapeutic part of my recovery. I learned a lot at a very young age and am grateful for those gifts and lessons that I hope I can communicate to people faced with challenges and adversity in their own lives.

Editor’s note: Terry Healey is a technology marketing strategy consultant. He is also an author and a motivational speaker. For more information about his speaking and his recently released book, please visit his website.