CancerGuide: Inspirational Patient Stories
This biography of my battle with non-Hodgkin's lymphoma includes personal comments about my challenges and victories.
On a visit to my doctor in 1996, I told him I had noticed some swollen glands around my bikini line. He asked if I had symptoms like loss of appetite, lack of energy, weight gain or loss, and/or night sweats. I had none, other than the night sweats, which I considered normal. But concerned about the glands, he sent me to a general surgeon to perform a biopsy.
At age 26, I was diagnosed with cancer. Shocked and confused, I had no idea what the doctor said when he told me over the phone that I had lymphoma. He didn't say much more other than to give me the name of some local oncologists and treatment centers. I immediately knew that I had cancer. My mother had just been through a long and difficult 5-year battle with throat cancer and it was unreal that it could happen to a mother and daughter so soon apart.
Regarding the disease itself, I had Stage IV, low-grade, follicular non- Hodgkin's lymphoma (NHL). The low-grade means that the cells are "slow-growing" cells, which are harder to treat because they are less aggressive (chemotherapy "likes" aggressive cancer types). The "stage" represents where in your body the lymphoma has spread. There are 4 stages of the disease and I was in the fourth stage. It had spread outside the lymph nodes and into my bone marrow. Reaching Stage IV was considered much more serious because it had spread throughout my body.
I was first treated at Hahnemann Hospital in Philadelphia. Protocol was 6 rounds of CHOP (acronym for four different drugs) chemotherapy over a period of 5 months. This was one of the most aggressive chemotherapy treatments available at that time. Treatments were once every 3 weeks and included a 6 hour drip in the hospital, followed by recovery at home.
I actually endured treatment very well. I recovered for the first week after my each of my chemo treatments in bed with a "chemo hangover". But by the second and third weeks, I was back to work and exercising. Keeping my mind occupied was critical. I lost my hair between 2nd and 3rd treatment. As the treatments got further along, the side effects increased and it was very difficult around the 5th and 6th treatments.
I was declared in remission as of May of 1997. I felt great, went back to work full time, and my short hair was very stylish!
After I had got healthy again in 1997, I did a lot of research about NHL on the Internet. The Internet is a powerful tool and sometimes patients think that learning about their disease is too scary or depressing; their attitude is. "let the doctors take care of it." I did that the first time and was not comfortable with that approach. I found that the education was empowering; I was able to learn enough about options in case the NHL ever returned. It was not that I did not have HOPE; I just wanted to be prepared.
I also joined a support group for cancer at The Wellness Center. We had a meeting group every week for patients with blood related cancers. I found that sharing my stories, as well as listening to others challenges and successes helped me immensely.
I was diagnosed with a recurrence of NHL in November of 1998. Based on my research, I changed hospitals and went to Memorial Sloan Kettering in New York. My physician was an expert in my disease. One thing I learned from my research is that not every oncologist is an expert for every type of cancer. Since NHL normally affects older people, the decision on how to treat me being "so young" was questionable.
The protocol was 4 rounds of another type of chemotherapy, followed by experimental drug (at the time) Rituxan to prolong the remission. Once again, I endured the chemotherapy relatively well. Although, it was a little more difficult psychologically because I knew the sickness I would feel after my treatments. I had to use many tools I had learned in my support group to "psych myself up" for the treatment. And of course, I lost my hair again. I was declared in remission in April of 1999.
I was urged by physicians to think about future treatment options. Since my remission was only a year and a half after my first chemotherapy, there were very high odds that I would not stay in remission indefinitely. The Rituxan was supposed to help keep me in remission longer, but they didn't expect more than 2 years. Future treatment options boiled down to a bone marrow transplant (BMT). The BMT enables physicians to treat blood related cancers with aggressive chemotherapy and/or radiation by allowing replacement of the diseased or damaged bone marrow after the chemotherapy/radiation treatment. The BMT is still considered somewhat experimental for NHL patients, so I would probably be enrolled into a clinical trial wherever I chose to be treated.
The preferred BMT is for the patient to have a related bone marrow donor; related donors are usually your siblings. My siblings were not "matches" for my bone marrow; therefore I was going to have to use an unrelated donor's marrow.
My physicians checked the national donor marrow program and found that I did have several unrelated donor matches, but the odds of my body rejecting the unrelated marrow were very high. The physicians gave me 50-50 odds of surviving the actual transplant. There was a 50% chance that I would develop "graft versus host disease" and/or reject the marrow, possibly developing an infection and dying. There was also a 50% chance that my body would accept the marrow and I would be disease free for life. For me, the up-front 50-50 odds were just too great a gamble.
I elected to have an "autologous" BMT, which meant I would use my bone marrow. The bone marrow is extracted from the patient prior to transplant and may be "purged" to remove lingering malignant cells if the disease has afflicted the bone marrow (as it was in my case). I was given 95-100% odds of surviving the procedure, since my body would accept my marrow. But even this option posed risks. The doctors could not guarantee that they could clean the marrow 100% and so there was potential for a relapse in the future either with NHL or another type of cancer. Even so, I chose this option in the hopes that if I ever relapsed again, by that time there would be a "cure". My family and I traveled to several hospitals to find the best BMT center for NHL. I decided to have my transplant in Boston, MA at Dana Farber Cancer Center. I was most comfortable with the hospital, the facilities, the staff, and the physicians. The treatment was considered experimental and I was enrolled in a clinical trial.
In January of 2000, I was admitted to the bone marrow transplant unit at Massachusetts General Hospital, which was a sister hospital to the Dana Farber Cancer Center. I was supposed to be in the hospital at least six weeks. The bone marrow unit was basically a lock-down unit and germ free. After a BMT, the patient's immune system is similar to an infant's and the patient does not have the ability to fight off infection, therefore there can be no risk of germs. All of my visitors wore plastic gloves and face masks and were limited on visitation hours.
Day 1: Removal of my bone marrow
This was an operation where they removed a certain amount of bone marrow out of my body. They then run it through a "cleaning" process.
Days 2-4: High dose chemotherapy
Luckily, I don't remember those three days or how sick I was, but I received continuous drip of the strongest chemotherapy available. Within two days, my hair fell out again.
Days 3-6: Total body radiation
After chemotherapy was over, I started radiation therapy. Up until this point, I had never had radiation. Radiation treatments were three times a day for three days. I was wheeled to an underground room and was laid on a cold, steel, table right underneath a large piece of radiation equipment. They played music to try to relax me, but it was still uncomfortable. For about an hour a red beam from overhead went up and down my body. Psychologically and physically, the radiation was extremely difficult. Yet, I knew that it was the treatment that was going to cure my body of cancer and eradicate all those cancer cells that the chemo had never been able to reach.
Day 7: Bone Marrow Transplant
The doctors gave my bone marrow back intravenously and my new life began. Many people that have transplants consider this their "new" birthday. It is the day that they are reborn and on their way to complete recovery.
Weeks 2-6: Recovery in the hospital
During recovery, the side effects from the drugs were extreme. The drugs were to help any infection that might occur, but were very mind-altering. I have little memory of those weeks. I had a couple of incidents where they thought I had developed infections, but my exceptional nurses and doctors handled every incident as if it were just a bump in the road.
My parents were my psychological life support during that period. My mother would sleep in my room occasionally (those were the only nights I actually slept). My father would be there in the morning drinking his coffee and reading the paper, just like he did at home. They walked me down the hall twice a day (my big outing)! They did the best they could to make me feel as comfortable as possible during those weeks. It was unreal how just the littlest things that they did for me seemed like the greatest gifts.
Week 7: Home!
It was a great day when I was released. I was coming off the drugs slowly and finally felt like myself again. I was able to go for walks outside and slowly got my strength back. For four months, I stayed with my parents at their home in New Jersey to recover. The best day was when I went out to my dad's golf course and swung a club for the first time in over 9 months. We only played nine that day, but what an event.
I am cancer free. I am grateful for the opportunity to be a survivor. My attitude, my education, my choices, and the support of my family saved my life. I also am blessed for finding treatments "outside" the norm. This is all through research and experimental medicine. Yet, all the physicians and drugs in the world are not going to save a person who has already given up on themselves.
Not once during this time have I ever felt sorry for myself. My blessings are to share my stories in the hopes that others can see that we can endure and that there are options out there and available. I don't know what my future holds, but my greatest gift is to share and help others in their emotional struggle in their fight with cancer.
This CancerGuide Page By Amy Ardito. © Amy Ardito
Page Created: May 19, 2004, Last Updated: May 19, 2004