The Diagnosis of Hodgkin’s Lymphoma

In January of 1995 I was 32 years old and had an almost 4 year old son and a new baby boy- just 6 weeks old. I felt a lump on my neck near my right collar bone. It was just the size of a pea. My sister in law, a nurse, said it was probably nothing, but I went ahead and asked my obgyn at my 6 week appointment. He also thought it was nothing but said to see a surgeon if it would make me feel better. I have always been proactive when it came to health so I booked an appointment with a surgeon. The surgeon also thought it was nothing and gave me antiobitics. A week went by. The lump still didn’t go away, so he said he would remove it and biopsy it, 99% chance it was nothing, just an infection. So I went into the little surgery not being worried about it. I had the surgery on a Friday and it took longer than expected. The surgeon told my husband he suspected something. My husband didn’t tell me that because he didn’t want me to worry all weekend. So finally on Tuesday the doctor’s office called me and over the phone said “You have Hodgkin’s Lymphoma but it is one of the best kinds of cancer”. I was a bit freaked out. I immediately called my husband, who was at work and then rushed home. But first he called his sister, the nurse, to talk to me and calm me down.

Then I called my best friend Amy, whose dad is a doctor in Tulsa, to find out who was the best oncologist around. He called back and told her Dr. Alan Keller with Cancer Care Associates. It just so happened that Amy was going to a cocktail party that night and the CEO of Cancer Care was there. Amy talked to him about me. I got an appointment booked to see Dr. Keller. But before I saw Dr. Keller, I saw another oncologist first that my surgeon had recommended. He was from another country, and was really nice but I found him hard to understand. He said for me to be “cautiously optimistic” with my prognosis. The one thing I remember that I didn’t like was that his office was dark and dreary. It is amazing how little things like the doctor’s office atmosphere can affect someone.

I went in to see Dr. Keller and instantly knew I was at the right place. Their atmosphere was cheerful. Dr. Keller was incredible. He also was optimistic with my prognosis and made me feel like the treatment was just something I had to go through to get better. Hodgkin’s is usually very curable today. It wasn’t 40 years ago. In fact, my next door neighbor’s first wife had died from it after their first baby and she was just in her 20′s .  Our next door neighbors were 30 years older than us and like our 3rd set of parents. They were very upset when they heard what I had.

Prognosis and treatment of chemotherapy and radiation

Immediately Dr. Keller did a bone marrow biopsy on me to help with the staging. Wow, that was the most painful test in my hip but it lasted just a split second. Luckily, it had not spread to my bones. Then I had to have other scans and tests. I was staged as a 2A. 2 because it had spread from my neck to my chest (I had a mass in my chest). “A” means I had no symptoms. Some people experience fatigue, night sweats, and weight loss. I didn’t have any symptoms but the lump in my neck. Hodgkin’s disease is considered one of the most curable forms of cancer, especially if it is diagnosed and treated early. The cause is not known. Hodgkin’s lymphoma is most common among people ages 15 – 35 and 50 – 70. Infection with the Epstein-Barr virus is thought to contribute to most cases. Another interesting thing I have heard is that many people who have had Hodgkin’s have had Mononucleuosis. I had mono in my 20′s. Unlike other cancers, Hodgkin’s disease is often very curable even in late stages.With the right treatment, more than 90% of people with stage I or II Hodgkin’s lymphoma survive for at least 10 years. If the disease has spread, the treatment is more intense but the percentage of people who survive 5 years is about 90%.

Dr. Keller advised 6 months of chemotherapy (every 2 weeks) followed by  6 weeks of radiation for me. He said if I had both, my chances of survival were 98%. He said most often, if it were to reoccur, it would come back within 2 years (glad that was 16 years ago!). They got started with my treatment very quickly after I was staged. I started treatment the day after my older son’s 4th birthday.

My friend Amy had another friend, Teresa who was diagnosed with stage 4 Hodgkin’s at the same time as me. We met each other and kept each other posted of our treatment. She is now fine today too!

Silver Linings

There was a silver lining to my cancer. My faith was really strengthened and I realized how many blessings I had in my life. Friends and family were making me meals, hiring a cleaning lady, helping in so many ways I almost felt guilty, but then I realized that it was a way they could feel better and contribute to what I was going through. My mother in law was incredible; every 2 weeks when I had chemo the boys and I would spend a night or two at her home and she took care of us. I kept telling myself that God had a plan for my life and I was going through this for a reason.

People were surprised at my positive attitude but I didn’t really see what other kind of attitude to have. My doctor was so positive and just looked at treatment as something I had to go through to get better. Who cared if I lost my hair? It was only temporary. Because my kids were so small I had to focus on them and couldn’t wallow in self pity. I didn’t have time.

One big thing I learned is how important it is to say only positive statements. People would say things to me like they were sad I might not be around or they knew someone who died from Hodgkin’s. That didn’t help me at all! I hated the look on some people’s faces when they found out I had cancer. It worried me. I chose to just listen to my doctor who was optimistic and knew the latest in medicine. I now am very careful to only tell positive and success stories to people that are going through something. You don’t realize how people can internalize little comments and how it can affect them. My husband was my rock-he shielded me from negative people and statements. My cancer strengthened our already strong marriage. We have now been married almost 27 years. He is my best friend. Ok, I digress!

I kept wondering what I was supposed to do with this experience. During my treatment one of my good friends came down with breast cancer. She had commented earlier she didn’t know how I was getting by and then weeks later she had a battle to face. I saw myself becoming an encourager. We started to have fun with it; me with my wig and she with her prosthesis (she too had just had a baby 2 weeks prior to her diagnosis and couldn’t have reconstruction for several months so had to have a prosthesis). Shortly after several other friends came down with cancer and I was there for them and hopefully an example. Happily, everyone is fine today.

The years went by raising little boys and for a while I just wanted to repress my experience and move on. I didn’t want my cancer to define me. I really wanted to forget it. I just wanted to get on with life. Over 10 years later, Happy First was born (more on how we got started later!).

While in the planning stages of Happy First, my dad was diagnosed with Multiple Myeloma. This is also in the Leukemia and Lymphoma family. This was confirmation to me that this was what I should be doing. Happy First gives a percentage of profits to leukemia and lymphoma research.  I want to give back. I wouldn’t be here today if it wasn’t for cancer research. We launched Happy First in May of 2007. My dad passed away in September of 2007.

Now you know why I am so “happy to be here” (and that is the name of my latest tee, more on that later!) and why I celebrate each month by saying “happy first!”. I now know that I went through Hodgkin’s Lymphoma to encourage and inspire others. I am grateful I went through it, but hope to never go through that again! It is still scary going for checkups, it brings it all back.

Wow, it feels weird writing all of this down to tell you. I haven’t thought of the details in a long time.

I hope I have helped someone with this story! I would love to see your comments below. If you have an inspiring story, please email me at debbie@happyfirst.com and let me know if you want me to share it.

Have a happy day my friends, and be glad you are here!