Diane J. Smith

I would like to use the words of the apostle Paul to help tell my story. 2 Corinthians 12:7-10.

And lest I should be exalted above measure through the abundance of the revelations, there was given to me a thorn in the flesh, the messenger of Satan to buffet me, lest I should be exalted above measure.

In February 1987, God put a plan into action for my life, a plan that I still do not know the outcome of and I may never know until I can ask in person. I was a senior in High School enjoying all the excitement your senior year can bring when I was diagnosed with Synovial Sarcoma. This is a rare cancer that starts as a tumor in the Synovial fluid of the joints and progresses to the lungs. At the time of diagnoses I had a very large tumor behind my left knee. I was referred to St. Jude’s Children’s Research Hospital in Memphis for diagnosis and treatment. St. Jude’s primary treatment at that time for Synovial sarcoma was amputation. So in February they amputate my left knee above the joint. After the amputation we were given very few choices, no treatment or experimental treatment that at the time had not shown any success. I elected no treatment. I have since been told that was a wise decision, because the data on the disease was so limited at the time.

I was dating at the time my now husband of almost fourteen years, Tom. I can vividly remember giving him the chance to break up with me after finding out the diagnosis. (After all not many young men would want to be stuck for the rest of their lives with someone handicapped) His response was so typical of him and his support to me over the years he informed me he wasn’t in love with my leg but with me! God has been the solid rock of my life but Tom has been there being the rock beside God helping to hold me.

After the amputation I returned home to my small town high school and tried to regain a “normal life”. I graduated with the rest of my high school class that May and I started college that fall.

One year after the diagnosis and amputation Tom and I were married. I walked that aisle that a year earlier seemed impossibility.

After only three months of married life our love was tested once again, I relapsed. Which meant a major lung surgery and the REALITY that this battle wasn’t over. I had thoracotomy number one on June 7th 1988. I took the summer off from college and returned to class in the fall. But in January AGAIN relapse and thoracotomy number two on Jan 19th 1989.

For the next eighteen months I remain cancer free but I remained out of college to help my mother who had came out of remission and was dying from leukemia. With the realization that her time was limited I decided to spend the time helping her. Driving her at least twice a week 100 miles one way for treatment and/or blood transfusions, spending countless hours sitting in hospitals with several near misses. I slowly watched her fade into someone that was convinced that we were all out to get rid of her. I think with all I have been through the worst day of my life would be the day she accused me of taking her back to the hospital so I didn’t have to take care of her. That was the last trip I made with her. After seemingly recovering once again, she went home to be with the Lord. She left me with a fine example of how to handle hardship. She past away in February 1990.

Mom was diagnosed 10 years prior to her death and over that period of time she made many preparations preparing her family for when she wouldn’t be with us, these acts were unknowing to the rest of the family until she was gone. She exhibited a certain grace that I can only hope to have, she realized that we may not be responsible for many of the things that happen to us, but we are responsible for our responses to them!

God has never told me that my disease is going to be healed from my body or has he told me to get my affairs in order as I feel he did with my mom. I am reminded of the biblical account in Daniel 3. Shadrach, Meshach and Abedinego What courage these men showed in the very face of death! What conviction! What faith! “God can save us” they said, “but if not, we will serve Him anyway.” That is the biblical prescription in its simplest terms. He can heal this disease that grips my body–but if not, my faith will survive.

After my mother’s death in February I relapsed again, in May. Tom had recently graduated from college and had taken a job in Tulsa, Ok. I had thoracotomy number three on May 30, 1990. Tom had to report to work at the end of that week. Tom and I moved in with my father and lived with him that summer and fall while Tom was in traveling a lot out of state. This enabled me to help my dad with the transition after mom died and to finish another semester of college with out a long commute.

That fall Tom had finished training out of state and we found an apartment in Tulsa. I would join Tom on the weekends in Tulsa and we started looking for a church. We were getting very discouraged when one Sunday night we decided to drive across town to Eastland Baptist Church. We knew the moment that we walked into the foyer that this was the church. We have discovered after 10 years of serving at Eastland how wonderful our church family could be in the trying times as well as the good.

I remained cancer free for the next two years. We were getting on with our lives and it looked as if I was beginning to beat this. I continued to commute for the next two years–three days a week–75 miles one way to finish my Elementary Ed degree. Five years after finishing high school and 3 surgeries later I finished that degree with honors.

Shortly after graduation, again on a routine checkup at St. Jude, relapse thoracotomy number four was on June 15, 1992. Again we would regroup put our lives back in order and face this disease head on only to be discouraged once again with thoracotomy number five on July 23, 1993.

Things were relatively quiet for the next two years again I thought I had beaten this disease. As time past I felt as if I was living my life in a holding pattern waiting on something to happen to me. It seemed as if everyone around me had children or were beginning to start their family, something I desired greatly. I came to a point that I would even break down and cry every time I heard someone else was expecting. While seeking advice from a friend at Eastland she brought out a point that I had never considered, none of us have the assurance that we will raise our children. We could be killed on the way home today, if that is God’s plan. She encouraged me to put my trust in God and if it was his will that I have kids that everything else would be taken care of, with or with out me, because it would be in his plan. After many prayers and consultations with doctors one month after taking that leap of faith I was expecting. Tom and I truly believe that we were in God’s will. After the announcement that I was expecting some were happy for us, others thought we were nuts.

For someone with countless medical problems and the added disadvantage of being an amputee, things went remarkably well. I was not sick, I lost weight instead of gaining, and in March 1995 I gave birth to a healthy 9lb 5oz little boy Wil. He is God’s special gift to me. I am so thankful that God has given me the wonderful job of being a mother.

I guess in my mind I had decided that this would be the end…God let us have Wil so that means everything will be okay now. But that wasn’t the end of my problems four weeks after giving birth I was told that I had relapsed again. At six weeks postpartum when most mothers haven’t even gone back to work I was having major surgery, thoracotomy number six. Leaving my newborn 300 miles away in the loving care of my church family.

God would allow me to learn how much that church family meant to us over they next three years. Thoracotomy number seven was May 6, 1996 (Wil was a little over one year old) Thoracotomy number eight was November 18, 1996 only six months after the last. Before Wil would be two years old I would have three major surgeries. People would ask how I could do it. In Genesis 39 in the account of Joseph it is repeated over and over “the Lord was with Joseph” I think of that when I am asked these questions. Only by the grace of God can you have a thoracotomy and keep up with a toddler.

At a moment of complete insanity, I guess, I asked after being clean for about 9 months if we could have another child. Amazingly the doctors said yes. Once again I became pregnant relatively quickly but after the first trimester I went for my follow up exam at St. Jude only to have the worst news told to us that I had relapsed once again. They wanted to do thoracotomy number nine before the baby was very big. The surgical staff assured me that it was relatively safe for the baby and they would take every precaution they could. On August 18, 1997 things went as planned. Recovery was a slightly harder and of course I was pregnant and still chasing a toddler. I carried full term and delivered another healthy baby boy, Alex. He is a very different child than our first a total opposite and we jokingly blame St. Jude and the surgery but, he gives me lots of laughs and I don’t know what I would do without him.

When Alex was 4 weeks old we moved to Memphis, TN. Tom had been offered a position there and we thought it would be helpful to live near my doctors. In July 1998 six months later again relapse thoracotomy number ten on the 27th of July. Friends and family came in from Tulsa to help and we had added to that support group with friends in Memphis. We never really adapted to life in Memphis and one year later was given the opportunity to move to the Atlanta area, which we accepted quickly.

Six weeks prior to the move another relapse January ’99. By this time my body and lungs were as you can guess a mess. The surgical staff didn’t want to touch me in fear of complications after surgery. So many of my operations have been so close together I really never would recover physically before having to have another. So each time the postoperative complications became worse than the actual surgery. So for relapse number eleven the treatment option was six weeks radiation.

Paul continues v. 8 For this thing I besought the Lord thrice, that it might depart from me.

Now I am not as understanding as Paul in asking only three times. I have asked now over 11 times. These surgeries aren’t simple procedures, they have never been able to scope my lungs. The incisions start at the top of my shoulder blades run down the shoulder blade curving going under the arm ending at the front of my chest approximately 13 inches long. They have dislocated my shoulders and broken my ribs countless times. My lung capacity is less than one third what it should be and I have problems that will take physical therapy on and off the rest of my life just to keep me from hurting daily.

After radiation in January 1999 we moved to the Atlanta area. And for the next two years three new spots were found but have shown no activity after their initial appearance. St. Jude elected to leave my body alone for a while as long as the spots weren’t aggressive. During the two years in Atlanta my long time doctor, Dr. Charles Pratt, had to retire from my case for health reasons. As you can imagine I had grown very close to Dr. Pratt he was more than a doctor to me. I saw this man more that most my relatives at a minimum of every three months for over 13 years. He had been the person making my medical decisions and he had kept me alive with a relatively normal life. This was a very hard time for us and we had many questions that needed answered. Also during this time Tom’s job situation had changed and we decided that it was time to go home to Tulsa and back to our family.

In the past almost 15 years they have made some advances with my disease and have new options today as compared to when I was diagnosed. How many of them would be successful on me, since I am a long-term patient, I don’t know. But we have now had to start exploring these options. St. Jude reassigned my case to Dr. Sheri Spunt in July 2001. Upon taking over my case she mentioned the experimental drug Gleevec and why she had hopes that it might work in my situation. In September 2001 I started taking this drug. They have made no promises about the out come but I have lots of prayers.

In almost fifteen of this disease I have learned that you need not be afraid to walk right up to reality and face it head-on; for no matter what that reality may be, our God, who is the “Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace” will be there. His arms will enfold us, His wisdom will teach us His power will enable us, and His love and mercy will enrich us; we will never be alone. We need not fear the one that loves us so perfectly.

Paul continues in v9 and 10 “And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure In infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ’s sake: for when I am weak then am I strong.

James Dobson paraphrases that scripture like this….”Everyone is asked to endure some things that bring discomfort, pain, or sorrow. This is yours. Accept it. Carry it. I will give you the grace to endure it.” That is what I feel God has done for me, given me GRACE that with out him I do not have.

In preparing my testimony I have tried to put down my thoughts about my life. I just keep thinking that I had just lived my life… I really don’t know that I handled it any differently than other Christians would. A friend once gave me an interesting thought. CHOICE I have chosen to pick joy out of life instead of bitterness. It doesn’t have to be a serious illness it could be your job, your husband, your children, your finances what ever but you have a choice to make.

My prayer for you is that as you face hardships in your life that you don’t get angry and bitter at God, but that you would pray that God would give you the grace to handle your situation.

About Sarcoma Alliance

The Sarcoma Alliance strives to improve the lives of people affected by sarcoma through accurate diagnosis, improved access to care, guidance, education and support.