by C.C. Howell
I had always been very healthy. I never really went to the doctor for things other than basic check-ups or the occasional sinus infection or bronchitis. But that changed in the early 90's. In 1993, I suffered a traumatic break-up with a boyfriend and was put on Prozac to help with a major depression I was in. I lost nearly 50 pounds within a month. I suffered from insomnia, had trouble with my sinuses and many other little ailments. Then I met David.
I wasn't ready for any type of relationship and he was coming on strong. After about 2 months of seeing each other I broke it off. A few months later I thought about him for a friend of mine. I introduced them and it was hate at first site. Within 2 minutes they were at each other's throats. They both have smart-ass attitudes and clashed immediately. This was how it was meant to be. Shortly after that, David and I began seeing each other again.
I was offered a job in Little Rock with the Arkansas Radio Network and KARN News Radio, which I accepted. David moved down a week later and asked me to marry him. I said yes and started planning our wedding.
I began having some problems with my stomach and intestines. I was diagnosed with Irritable Bowel Syndrome.
Our wedding was beautiful in April of 1995. About 3 months after our wedding my father died of cancer. We began trying to conceive a child as soon as we got married, with no luck. I charted, I temped, and I counted days. We did the deed every other day without fail and nothing! No babies. In 1996, I finally became pregnant, but soon after I miscarried. We were devastated.
In late 1996, I noticed a knot around my left collarbone that would pop out and then hide behind the bone. I was told by several doctors that it was a lymph node, but was nothing to be concerned about. They said lymph nodes swell sometimes and that means they are doing their job. I saw about 7 different doctors about the swollen node and all said the same thing to me. "Lymph nodes swell, there's nothing to be concerned about, you're too young to worry about cancer."
In early 1997 we moved to Louisiana. I decided to go get checked out for our infertility. Dave and I both underwent a series of tests. Finally, an ultrasound revealed "cysts" around my ovaries. The diagnosis -- Polycystic Ovarian Syndrome. This is not life threatening so we decided to not do anything about it at the time. We were both working long hours in a stressful job.
In late 1998, we moved back home to Arkansas. I was hired as the morning show host for a 50 thousand watt Country Music station. During this time I started noticing more lumps. Under each arm I had a ping-pong ball size lump. In my left groin I had one about the size of a tennis ball. And I also noticed I couldn't wear anything tight around my abdomen. I hadn't worn a pair of jeans in a couple of years...only stretch pants. I later found out I had a baseball to softball size mass of lymph nodes in my upper abdomen.
Approximately a year after taking that position, I was interviewing a nurse with the local health department that I had known for many years. After the interview I spoke with her about my POS and infertility. She recommended a new doctor in town. She said he looked like he was 12 but was very good with women's health issues. I made an appointment.
My first appointment was routine. We simply talked and then set up an appointment for a full physical and pap.
At my second appointment when the doctor actually felt and looked at my lumps he became concerned. We discussed family history. In addition to my father's cancer, both my grandmothers had breast cancer. The doctor was concerned about that possibility. He scheduled a mammogram for me for December 7th with a return appointment on the 28th for the results. On December 8th I received a phone call from the doctor himself. He was alarmed with the results and wanted me to go see a surgeon the next day. As I was going to be alone in the radio station on that day, a Friday to run 3 stations by myself, there was no way I could make that appointment. We scheduled for first thing Monday morning.
At that appointment, the surgeon came in and poked and prodded around on me. Very point blank, he looked at me and said, "The good news is I don't think you have breast cancer. The bad news is I think you have some type of lymphoma." I had no idea what lymphoma was but it sounded scary.
The next day, Tuesday, I had a biopsy done which removed some lymph nodes from under my left arm. After the biopsy, the surgeon went out and told my husband and mother in law that it went well and that I did have lymphoma. I was scheduled to see an oncologist the very next day.
The oncologist told me that I had Non-Hodgkin's Lymphoma, specifically Follicular Small Cleaved Cell Lymphoma. It evidently was a very slow growing, or indolent kind. Mine was labeled stage 4, grade 2. I had this for a very long time without knowing it.
I was sent to a second oncologist for CT Scans and more specific staging along with a bone marrow biopsy. That BMB showed significant bone marrow involvement meaning I had many cancer cells in my bone marrow. I was sent back to my original oncologist with a recommendation for treatment.
This started my 5-year journey. I've had many treatments and many milestones during these 5 years. The following is a timeline of what treatments I have had and milestones I have reached during this time.
• January 2000 I started a 6 round course of FND (Fludarabine, Novantrone and Dexamethasone) I would receive the chemo on 3 consecutive days once a month. During this treatment I continued to work only taking the week off that I got treatment. I also shared my story with my listeners, as I needed to explain to them why I would be taking a week off once a month for the next 6 months. I also began writing a series of newspaper articles in the local paper. I did not lose my hair with this treatment but it did thin out a lot. My husband and I moved in with his parents because we had no idea if I was going to be sick or not during this time. I was only mildly nauseated, no vomiting, but some smells would make me feel sick to my stomach. I was tired a lot and rested as much as possible. Since my job started at 5:30 am and I was done by noon this was easy to rest when I needed to. My treatment was postponed twice during this time due to low blood counts. I finished my treatment in late July 2000. The local oncologist told me I was in remission following a CT Scan. No Bone Marrow Biopsy was performed at that time.
• August 2000, for my birthday, my husband took me to Branson for a day of shopping and we stopped at Shoney's for dinner on our way home. While I was getting my food my husband kept looking at this woman standing near me. He had arranged for my sister, who I hadn't seen in over 20 years to meet us there and surprise me. I was so happy and my husband was the best for doing this for me!
• In November 2000, my brother in law was involved in a serious car accident in which he broke his neck and was paralyzed. We took in his 15-month old daughter to care for and I quit my job to do that. We kept her for 3 months, the time my BIL was in the hospital.
• February 2001, A CT Scan showed significant growth of lymph nodes. The beast was back. My veins had become very bad during the first course of treatments so the decision was made to have a Port-A-Cath surgically inserted into my chest. It feeds directly into a vein and is now used for all my treatments. It truly is my best friend.
• March 2001, started a course of Rituxan, a monoclonal antibody used for Non-Hodgkin's Lymphoma. I received one treatment once a week for 4 weeks, but was unresponsive to the treatments.
• May 2001, started a treatment called CHOP (Adriamycin, Cyclophosphomide, Vincristine and Prednisone). These treatments were harsher than the first course. I received this one day a month. My blood counts dropped very low and the oncologist delayed my treatments several times. I received only one treatment from this oncologist. My hair began falling out very quickly.
• August 2001, my husband and I decided to seek the opinion of the other oncologist in Little Rock that we had been sent to for the bone marrow biopsy. He gladly accepted my case and has been my primary oncologist since that time. I was scheduled to have a treatment of the CHOP on the next Monday and every 3 weeks after that. On Saturday I received a phone call from an aunt in Oklahoma that one of my cousins, only 20 years old, had an accident and was killed. I drove over to my mom's house and spent the night. We went to Little Rock the next morning for my treatment, I then drove to Oklahoma City immediately following my treatment to attend the funeral which was scheduled for the next day.
• January 2002, a CT Scan showed no swollen nodes and no evidence of disease. A BMB was performed. Two days later I received a phone call with the results. My bone marrow was clean, not one cancer cell in it. I was in a complete remission. I drove to my husband's place of employment. We went into the back room and I told him the good news. We hugged and kissed and cried together! Everyone asked what was wrong and we announced the good news and everyone else cried with us! I was told I could stop all my medications I had been taking including birth control pills. They said it was unlikely that I would conceive a child ever again due to the type of chemo I had received. It should have made me sterile.
• June 2002, I made the trip to Little Rock by myself for a routine CT Scan to make sure my remission was still holding. It was. But on the way home I began getting sick to my stomach, something I had never done with the scans before. I was sick for 10 days and lost 25 pounds.
• July 2002, my breasts were sore and I failed to start my period. That really was nothing unusual, as I had irregular periods caused by the chemo. But I thought let's take a home pregnancy test just to see what it says. It was positive, but only faint. I asked my husband to look at it and he said it was positive. I made an appointment with my family doctor who said he would run a blood test just to put my mind at ease, but it was highly unlikely that I was actually pregnant. He thought maybe my hormones were just out of whack from the chemo. He came back into the room and told me I was pregnant. I became worried because he told me my conception date was May 21st. I had a CT Scan in June. What would happen to the baby because of that? No one seemed to know. I had a fairly uneventful pregnancy. My blood counts rose back to normal ranges while I was pregnant and my appointments with my oncologist seemed routine with no sign of the cancer returning.
• February 2003, Topanga Elaine Howell made her way into this world via C-Section.
• March 2003, I ended up with an infection in my c-section incision because a small part of it had opened back up. I was put on antibiotics and the incision was cleaned. I was scheduled for a CT Scan, which showed lymph node growth in my groin. I was scheduled for a biopsy to see if the cancer had transformed or if it was the same kind I had before. It was the same kind. I was scheduled for treatment of Rituxan once a week for 8 weeks. So we made the trip to Little Rock once a week for about 12 weeks total with tests and regular appointments and treatments.
• June 2003, there was no response to the Rituxan. The next step was to be a new kind of treatment called Zevalin.a radioactive isotope, a type of internal radiation. I would be only the 6th person in the state of Arkansas to receive it. The approval process was long. Another bone marrow biopsy had to be performed and blood tests. Of course approval had to be sought from Medicare since they were my only insurance at the time. It took a while but I was finally scheduled for September.
• September 2003, Zevalin treatment was administered. This treatment cost $37,000 for one infusion. My counts were monitored for several months as it keeps working for a long time after receiving it. My platelets dropped causing me to have nosebleeds, but never dropped low enough to need a platelet transfusion. I was scheduled for check ups every 3 months with my oncologist to check my progress. A Ct Scan showed all but one node was gone. I still had a "hot spot" in my groin. I continued to have regular monitoring but was allowed a few months of peace.
• May 2004, significant growth has been detected on the latest CT Scan. The Zevalin had not worked. We were scheduled to start 2-CdA (cladribine) in June.
• June and July 2004, I received Cladribine once a month for 7 days straight infusion at home. Despite my fear of being unable to make it, I was able to participate in my daughter's wedding in July. I was so very grateful for that moment.
• August and September 2004, CT Scan showed no improvement in nodes. The treatment was not working. My counts dropped dangerously low and I now have to be monitored very closely. I receive shots of Neupogen and Procrit to boost my white and red blood cells each week. My platelets drop to 29 (normal is 140 or above) and I needed a platelet transfusion. A couple of weeks later my counts have dropped again and my hemaglobin has dropped to 8 (should be 12 or 13) causing me to need a blood transfusion. My oncologist talks of sending me to a major cancer center somewhere.
• October 2004, after talking with my insurance company, we decide to go to Rush University in Chicago for an evaluation for a stem cell transplant. My records are being sent and we will be scheduled for an evaluation soon.
During all these treatments, there are noticeable side effects. I continue to have extreme fatigue. I am tired all the time. I have lost much strength and am not able to perform any type of work. I was approved for Social Security Disability for relapsed Non-Hodgkin's Lymphoma. I have suffered from recurrent ear infections, which caused me to have tubes placed in my ears in 2002. Chronic sinus infections, Bronchitis. both common occurrences that leave me drained. Right now I have packed maxillary sinuses, which was revealed on my last 3 CT Scans. I also have a sore throat and have had this for about 2 months now. I am to see an Ear Nose and Throat doctor for this at the request of my oncologist.
Complaining or even talking about my health journey is honestly not my cup of tea. I am much more comfortable giving than receiving. I am very grateful to be surrounded by the love and support of each of you within this community and at home. It is my hope that my story will inspire someone else to maintain courage and to continue the battle. From my family and myself, thank you for reading.
Copyright © C.C. Howell. Permission to republish granted to Pregnancy.org.