I was 12 years old when I first noticed the signs of cancer. We were living in High Point, North Carolina. On a warm, North Carolina summer day, I got out of my grandparents' pool and went over to where my mother, aunt and grandparents were sitting under the shade of some trees. My mother felt under my left jaw bone and noticed an elongated lump, maybe 3-4 cm long. She thought it was "swimmer's ear." For more than two years, we would periodically go to doctors and ask about it. We went to our pediatrician, an ear, nose, throat doctor, an allergist, and even a chiropractor for a while. The ENT doctor said he didn't know what it was. The allergist stuck 140 pinpricks on my back to see what I was allergic to (modestly to dogs and pine trees.) The chiropractor tried to use "ultrasound" on the tumor. Obviously, none of these tests or treatments reduced the nodules. Between the time that I was 12 until I was 14, the elongated lump grew to a size of 8 cm x 6 cm x 3 cm. I also began to have consistent itching on my knees and legs and places that wouldn’t heal on my hands. I missed quite a few days of school because of allergy like symptoms and had what my family called “sick headaches.” These were headaches that caused me to be nauseous and literally wish that I was dead. During that time period, no one suggested to us that the mass might be cancer. No one suggested that I have it treated or have a biopsy done. The doctors repeatedly indicated that it was nothing more than a cyst. The mass was hard and smooth. I could physically move it around. Finally, at age 14, I asked my mother if I could have it removed. She said yes and surgery was conducted. The surgeon did a good job. The story goes that when he removed it, he began to swear in the operating room, recognizing the tumor for what it was. This was my first surgery.
The doctors conducted a biopsy of the tumor and the result was Hodgkin's Disease. Interestingly, early in the treatment of 1981, the medical records indicate "Lymphocyte Predominant" Hodgkin's Disease. But as the records progress, the annotation for "Lymphocyte Predominant" ceases, and they start referring to "Nodular Sclerosing" Hodgkin's Disease.
I remember Dr. Kimball and Dr. Paterson coming into my hospital room to tell my parents and I that it was cancer. They were very dour. I already suspected. I was five days in the hospital recovering from this procedure.
A procedure that is rarely used today was conducted on me. The procedure was called a "Staging Laparotomy." This is where the surgeon opens the abdomen, looks for tumors, removes the spleen (and appendix in my case), and checks the spleen for cancer. In my case also, the surgeons cut a 5 inch incision on my left hip, chipped the hip and took bone morrow from the hip to check it for disease. The incision on my abdomen was about 10 inches long. The spleen and bone morrow were clear. I was in the hospital for 3 weeks recovering from this surgery. I refused pain medication for most of the first couple of days after surgery. My blood pressure was extremely high. The staples were removed five days after surgery by a resident. The incision opened, so the doctors placed butterfly tape across the incision in the abdomen. This was my second surgery.
Furthering the diagnosis, incisions were made in the tops of each of my feet under local anesthetic. Small needles were placed into my lymph system and dye was pumped in. (They don't do this anymore.) I was then injected over a period of a couple of hours with dye to illuminate the lymph system for x-rays. This was my third surgery.
The doctors indicated that I was in Stage IIIA. Meaning that I had nodules above and below the diaphragm, but not in the organs or bone marrow and that I was showing no physical symptoms of the disease.
My medical records indicate that my prognosis for recovery was "Poor." This information was withheld from my family and I. That was a mercy. It was hard enough on my parents as it was.
I never cried about having Hodgkin's Disease. I still never have.
In addition to the surgeries, I was treated with both chemotherapy and radiation therapy. For chemotherapy, I was injected with adriamycin, procarbazine, vincrystine, cytoxin, and orally took prednisone. The left side of my jaw/neck and abdomen were both irradiated with 3500 rads of radiation. This was the year that I was in the 9th grade and my last year in my beloved North Carolina. I missed a number of school days but continued with my studies and passed all of my classes.
After chemotherapy, I would go home. Often I would drive, because in those days in North Carolina, we were given our learner's permit young. (As an aside, my older brother drove a school bus his junior and senior years of high school. All of the school bus drivers were Juniors and Seniors in high school in those days.) By the time I got home, I was feeling most unwell and would sleep for 24 hours. In those days there was no anti-nausea medication. I would wake up with hands that were so numb that I couldn't open my fingers.
When you lose your hair with chemotherapy, you lose it in clumps. I would take a hand full of hair and pull it out. It held momentarily and then would release. When you lose your hair this way, you wake up with lots of hair on the pillow and in your mouth. Eventually, I just shaved it all off.
It's hard going through chemo as a kid. I didn't have my own hair, my weight would fluctuate wildly, the doctors drew lines on me in broad purple that I was not allowed to wash off so they could direct the radiation consistently to the same area. I was self consciously different.
I went into remission at age 15.
For the next 24 years, I lived. I had one non-cancerous nodule appear under my left jaw. It was removed as my 5th surgery.
I finished high school. Dated. Went Steady. Played football. Went to college. Earned two bachelor's degrees. Joined the Navy. Circumnavigated the Globe 4 times. Traveled to 50 plus countries. Fought in Desert Shield/Desert Storm. Worked at the National Security Agency. Worked for a Congressman. Went to Law School. Got Married. Started a successful and growing law firm. Had 3 children (twins and a solo.)
And at age 39 had a recurrence.
After an annual physical, my primary care physician called me and said that I had nodules in my chest and neck. I asked what he thought. He was straight with me and said that he thought it was Hodgkin's. He called a friend of his, Dr. Phil Leming, who saw me immediately after hours in his clinic. He was worried about the shock of recurrence to me. But I wasn't shocked and I wasn't afraid. I under went a PET/CT and a regular CT. These showed the nodules in detail and demonstrated that they were metabolizing sugars. Active Cancer in the neck and chest, especially around the aortic key.
The major tumor this time was behind my right collar bone. The surgeon removed a part of this tumor, but it was melded with my carotid artery. It could not be completely removed. The physician nicked my carotid during the surgery. This was my sixth surgery.
A biopsy of the removed nodule was conducted by Dr. Elaine Jaffe, Renowned pathologist. Dr. Jaffe diagnosed my cancer as Nodular Lymphocyte Predominant Hodgkin's Disease. This is the non-classical variant of Hodgkin's and is very rare. Incidentally, recurrence of Hodgkin's after 24 years is also very rare.
Dr. Leming also performed a bone marrow biopsy. He injected me with certain medicines intended to cause me to go to sleep. No matter how much he put in, I remained fully conscious and alert. So, we just did the procedure. It felt like a hammer striking an electrified nail that was driven in an instant from the hip, down the femur to the knee. One sample was taken from each side of my hip, so down each femur to each knee, one at a time. I said, "Son of a Gun" and laughed. That really smarted. But I've definitely had worse. This was my seventh surgery. The bone marrow was not implicated. I was staged at Stage IIA. Nodules on one side of the diaphram and no other symptoms.
Dr. Leming wanted a second opinion as to treatment. So, I packed off to Boston to see Dr. George Canelos, a renowned Hodgkin's Guru who practices at Dana Farber Cancer Institute. This is a top research and treatment facility. Dr. Canelos believed that we should try to treat causing the least harm possible. He felt that in Hodgkin's, often the disease didn't kill people, rather, the doctors did by over treatment. So, I came back to Cincinnati and for 6 months I was treated with Prednisone, Vincrystine, Cytoxan and an anti-body treatment called Rotuxomab. Rotuxomab has few side effects other than a potential allergic reaction. It attacks CD-20 cells. Since Nodular Lymphocyte Predominant Hodgkin's Disease is CD-20 rich, it has proven effective against this disease. I went into full remission in November 2006 as demonstrated by CT and PET/CT. I took two more treatments. The last of which being December 13, 2006.
I had a follow up PET/CT on January 9, 2007. I thought, "How ridiculous. Even if it's going to come back, this is too early. Less than a month." Wrongo, bucko. Recurrence. So, this is my third occurrence of HD. No treatment plan yet. Easy as she goes.
As of today, I don't know what the future holds. But which of us does?
I am not afraid. This is a great opportunity. I hope that God uses me to bless others through this experience.
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There are 4 classical and one non-classical forms
of HD. They are as follows:
of HD. They are as follows:
- Nodular sclerosis(NS)
NS accounts for 60-70% of Hodgkin's cases. - Lymphocyte predominance (LP).
LP accounts for 5% of Hodgkin's cases. - Mixed Cellularity (MC)
MC accounts for 20-30% of Hodgkin's cases. - Lymphocyte depleted (LD)
LD accounts for about 5% of Hodgkin's cases. - Non-Classical (LD)
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