At the age of 24 and three years into my marriage, my husband and I discovered we would be expecting our first baby. We started to happily prepare for parenthood and both of us were looking forward to being new parents as any other new parents would be. Around my seventh month, I began to be bothered by swelling in my feet and legs and difficulty breathing. Tests revealed a buildup of fluid around my heart, presumably from a viral infection. Doctors admitted me to the hospital immediately, drained the fluid from around my heart, and then drained both my lungs resulting in a loss of 22 lbs. all of which was fluid. I stayed in the hospital for a week and they monitored the baby with a hand held monitor every so often each day and claimed the baby was just fine. I was informed by the doctor that they did see something on the x-ray that showed one side of my heart being somewhat larger than the other. However, they informed me that after I gave birth they would look further into it with more testing and scans. I was released at the end of the week and home I went to await the baby's arrival which was approximately 10 weeks away.
One month later – in my eighth month of pregnancy, I lost the baby. There was no explanation as to why. As it turned out, my baby may have helped save my life and brought about the turn of events that would soon take place.
Two weeks later, while still grieving and trying to recover physically from my loss, I began to experience severe breathing difficulty and a racing heart rate. After my parents who happened to be over visiting that day spoke with the physician he informed them to immediately take me to the emergency room, where doctors decided to operate to insert a pericardial "window" to drain the fluid from around my heart. It was then that they discovered the cause of my problems: a large tumor was encroaching on my heart.
Unable to see the entire tumor, doctors closed my chest and ordered an MRI, which showed a massive tumor extending beyond my heart into my chest cavity. A second surgery was performed, but the tumor was found to be even larger than doctors had suspected, and it was growing into the blood vessels of my heart. They closed my chest again and started me on chemotherapy.
I was so thankful for my mother-in-law, Sonya Goodman, who has a background in the health care field. She was on hand for each consultation with the medical team. She realized that my condition was unique, and that I needed the most aggressive treatment possible. After meeting with tumor specialists at several large regional medical centers, we decided to come to the University of Maryland Medical Center's Greenebaum Cancer Center.
At UMGCC, my oncologist explained that I had a very large, rare tumor known as a leiomyosarcoma, a type of tumor that begins in muscles in the trunk. Further diagnostic tests revealed that my heart wasn't the only major organ being compromised. The tumor was growing from my diaphragm onto my liver as well. I would need to continue with chemotherapy in hopes that the tumor would shrink enough to be operable.
If all went well, my plan of treatment was to include chemotherapy for six months to shrink the tumor, surgery to remove as much of it as possible, and follow up chemo to make sure any remaining cancer cells were destroyed. From the very beginning, my doctors had a concrete plan of action. That was very comforting to know. My family and I never heard: 'You have so many months to live.'
The months that followed were a challenging time: six months of chemotherapy treatments, interspersed with hospital stays to treat infections that raged as my body's defenses were weakened by the powerful drugs. I persevered, and eventually the tumor shrunk to half its original size, making surgery an option. Doctors explained the risks and uncertainties of the extraordinary surgery that everyone hoped would save my life. Having already endured two major heart surgeries and chemotherapy, I wasn't about to give up the fight now. With no guarantees, but a lot of confidence in my team of physicians, my family, and God I decided to go for it.
Next came six weeks of rest, so that I could recover and regain my strength for the upcoming surgery. I also did as much as I could during those six weeks such as going to dinner, shopping, going to plays, etc., knowing that I would be laid up for a while after my surgery. On November 16, 1995, a team of surgeons performed a 10-hour surgery to remove the tumor, along with part of my liver, heart and diaphragm. To repair my diaphragm, doctors used a combination of Gortex and mesh where the tumor was removed. Fortunately, my liver was able to regenerate and grow back after being re-sected. More chemotherapy treatments followed and another long period of recovery from the surgery.
The results were worth the entire struggle. Over the next three years, my three-month follow-up visits showed no apparent recurrence of the tumor.
Then suddenly, in September 1999, I began having pain in my chest and discovered a lump by my breastbone. An MRI revealed that the tumor had recurred, again growing from my diaphragm, but now growing onto her breastbone. I was started on more chemotherapy to shrink the tumor in advance of yet another surgery. Since the tumor did not appear to involve my heart this time, doctors were also able to use radiation therapy to attack it.
After all I'd been through, the radiation was music to my hears. I wouldn't have to stay in the hospital for days upon days and my white counts wouldn't go as low as the chemo made them for me to keep getting infections. My only noticeable side effect was some minor irritation to the skin on my chest and carbonation from soda burned going down, so I just drank water instead.
In March 1999, I underwent a 14-hour surgery to remove the tumor. My entire diaphragm was removed this time, along with part of my breastbone. Doctors again used Gortex and my own chest muscles – which were stretched in a crises-cross pattern – to fill the space where my breastbone had been.
Most of the tumor was removed, except for a small section attached to my vena cava, the main vein that returns blood to the heart. My doctor promised me that he would do everything in his power to get me off the operating table alive and it was too risky to try to remove the small section along a main vein. Therefore, the doctors then inserted a catheter into my chest, which allowed them to deliver daily radiation directly to the site of remaining tumor tissue.
It's been 12 years now since my original diagnosis. I go back to see my thoracic surgeon/oncologist twice a year for follow-up visits, and have had no recurrence. I was so affected by the success of my treatment that I wanted to give something back to the community. I found a way to make a meaningful contribution and at the time I became a volunteer and met with newly diagnosed cancer patients. I have also given several speeches at local Relay for Life's and other events. If I can share my story with other people, they too can see that there is hope for people with cancer.
One of the most amazingly helpful things that happened to me early on in my ordeal was a visit by a nurse who was a three-year breast cancer survivor. It was a very dark time for me, but seeing her and hearing the words survivor and her story gave me hope. I thought, here's someone who has been on the other side and survived. This nurse and I developed a special relationship throughout my treatment.
One of the most important things when you are going through this disease is to make sure you receive excellent care from everyone you deal with. I can honestly say that during and after my experience I was treated wonderfully from the front desk clerk to the nurses, to the social worker, to all my doctors. I was treated like a whole person, not just another patient.
I have learned many things about myself through this experience. I know that there isn't anything I can't do once I put my mind to it. I learned to never give up. Life is too short to hold grudges. I learned that yesterday is history, tomorrow is a mystery, but TODAY is a gift that's why we call it the PRESENT. I live by those words each day. I hope sharing my story on this web-site will help anyone who has been affected by this disease and give them hope that it can be survived, even twice!!!
|
