The Beast - Hodgkin's Lymphoma
Hodgkin's Lymphoma - Mixed Cellularity
In the hubpage article Surviving Cancer - Hodgkin’s Lymphoma, I wrote about my experience about how I was diagnosed with cancer and how I was treated for the disease. This was actually my second diagnoses and occurance of Hodgkin’s. I published it roughly around the time I was declared in remission on March 2010. But when I was diagnosed in April of 2009, I also wrote about my first occurance as a way of dealing with the cancer returning. It is more of an emotional reponse about when I was diagnosed the first time exactly fourteen years before. Below is my story that began early in 1995.
The Beast Emerges
It was frightening to think it was growing inside. To me it seemed like some kind of beast. The first clue that something was wrong took place during a slightly chilly spring evening. I had locked my keys in my car when I was about to head home from school. I remember the stream of headlights flooding through the university entrance. I stood on the sidewalk and stared, desperately searching for the tow truck that was coming to free me. I was upset so much that I had a coughing fit, something that was happening more recently. I spit up what I at first thought was phlegm, but it wasn’t exactly that. It was white and chalky and surprisingly dry. I thought how odd. It was the first sign that something was wrong.
By January of 1995 the beast first made its appearance. I must have fed it too much over the holidays with all the good food. It first appeared as a lump on the right side of my neck. At first, I wasn’t about to do anything. It didn’t hurt. So I left it alone. But my family urged me to go to the doctor. At first I resisted, but I eventually gave in.
Visiting the Doctor
The doctor didn’t know what it was. I had a blood test. I had a chest X-ray. None of it showed anything out of the ordinary. He referred me to a specialist who he said was the “expert in lumps and bumps”. The specialist sent me for a CAT scan. I can remember his facial expression when he looked at one of the slides on the lighted wall as he made the comment “Uh oh”. It was a two centimeter mass in the lower right sinus cavity. He stuck a mirror down my throat and I almost gagged. He got a glimpse of it and told me he couldn’t believe that I was unaware of it.
“How can you breath”, he said.
Next, he inserted a needle in the roof of my mouth and my face went numb. Then, he darkened the room. He inserted a scope up my nose. It was a thin stainless steel rod with a bright white light on the end. When I first saw it, I thought of little grey people with large almond eyes. He made an appointment for me at the hospital. He was going to perform a biopsy, not on the lump in my neck, but the tumor in my sinus cavity.
At this point it was obvious what it was, but how could that be. There was no history of cancer in my family. Our problems were heart disease and diabetes. Cancer was just not in the picture. But apparently I was going to be the first. Death didn’t scare me but the method of dying did. I have to admit and I won’t go into any detail, but at that point in my life, I was not happy. I didn’t care what was going to happen. My sister was shocked at my resigning myself to it. She was surprised and upset. When leaving one day, she cried.
The biopsy was an odd experience. It was the first surgery that I had to go through. As I laid on my back the doctor looked down at me and told me I would be going under now. Suddenly his face vanished and was replaced with a clock on the wall. I found myself sitting in a reclining chair in the recovery room. A couple of days later the results came in. I was on the phone while in a walk in storage closet at work waiting for the doctor. When he finally spoke to me the diagnosis was non-hodgkin’s lymphoma.
Again, I was handed off to another doctor like it was a sport. Little did I know at the time the oncologist that I went to see would play a part in my life 14 years later. At the first visit he scheduled another biopsy. This time they were going after the lump in my neck. It was now late April and the large lump was now joined by two or three companions clustered around the original large one. The surgeon removed the lump and its buddies. The biopsy came back as Hodgkin's lymphoma. Of the four types it was the lesser common mixed cellularity.
Even though the surgeon removed the base of the nodes, it didn't stop the progress of the disease. It was almost as if the beast became wise as to what was happening. Within only a few weeks a small string of lumps appeared stretching from the incision to the base of my neck. The beast was making a break for it. Trying to make it to open ground in my chest where it could flourish.
To gauge exactly how far the disease actually spread, I was sent to the hospital for a scan. I remember sitting in a waiting room when a nurse with a protective vest arrived with a metal container. I was then rather shocked when she opened the metal container and it revealed a metal syringe with a somewhat long needle. It was the medical industry's version of a Russian nested doll. I was injected with something radioactive. I can't remember. It could have been a radioactive sugar. This was pre PET scan times.
Luckily the scan showed the cancer had not spread anywhere else other than my neck and sinus cavity. Next, I went back into surgery. They put a hunk of plastic in my chest, left side. It was a dual infusion port needed for chemotherapy. I was so horribly depressed when I came out of surgery. I was all taped up with two hoses that stretched practically to my navel. I thought it was permanent. I didn't realize that they pre-installed two iv’s.
From the time that I first visited the oncologist to the time the infusion port was installed, it was only about four weeks. By mid May the carpet bombing began. Three weeks later, the results of friendly fire, my hair fell out in clumps and my white blood count dropped to nearly nothing. The count was so low, I had to skip two weeks instead of one before my next treatment. The first treatment was nothing. I thought, this is easy. This will be a breeze. I simply felt a little tired. I actually went to the gym the next day and ran on a treadmill.
Boy, was I naive. My treatment day was Thursday. In June, on my birthday, on Friday, I had cake and ice cream and really enjoyed myself, a day after chemo. The next two days I landed in bed with a horrible stomach ache forgetting what a bowel movement was. This was the third treatment. I had five more to go.
Despite the horrors and how indiscriminate chemotherapy can be, the beast was taking a pounding. The string of lumps shrunk significantly even after only one treatment. By the third, they were gone. The advance into my chest had been halted.
However, successive treatments were making me more and more sick. I remember once sitting in the recliner receiving my punishment when a couple of seats over another patient pulled out his sack lunch and then started eating a sandwich. At the time, we were the only two in the room. If he would have eaten slowly, maybe that would have helped, but he attacked that sandwich as if he hadn’t eaten in a long time. I already felt nausea, but now I really wanted to vomit. I looked at him in disdain. I envisioned my hands around his neck. I wanted to kill him.
I dreaded the last chemotherapy session. I nearly vomited immediately as the drug entered my infusion port. When it was over, I was so relieved despite how sick I was. I thought, wow, there are some complications that I avoided, but my celebration was premature. A few days later I got the dreaded mouth ulcers. I could barely swallow they hurt so bad. Luckily I was given a few extra weeks before the radiation treatments.
Again, I was naive, thinking that the radiation would be easier. I went back to the specialist on my own. He stuck his alien probe up my nose again. He was surprised, not that the tumor was now gone, but that my mucus membrane was intact. It was as if the tumor was never there. I made sure the radiation oncologist got the report. He decided to reduce the number of treatments from 20 to 18. This really did not help since I was fried by the tenth treatment. I could barely swallow and ice cream and yogurt were the only foods that I could eat. In some ways it was both amusing and scary when my treatment was about to begin. How everyone ran from the room almost falling over each other as if they were being chased by an ax murder, leaving only myself. But hey, it didn’t matter, because I already had cancer. Radiation wasn’t going to hurt me.
Oh, yes, radiation wasn’t going to hurt. Yes, sit in a dentist’s office and hear the single beep when you are given an x-ray. Now, imagine a machine ten time larger and the beep blaring for 15 seconds and that is only the first of four times in one single treatment. That is how you get scorched. The right saliva gland in my mouth is now permanently damaged. It still produces but it is diminished. I don’t really have an excessive dry mouth but I couldn’t spit if my life depended on it. I am still rather lucky otherwise, because I still have all my teeth and I have good oral health and I don’t have to carry around a water bottle to talk.
Finally in Remission
I always wondered how much was enough. By the third round with chemo, the beast wasn’t on the ropes, it was dead in the middle of the mat with the rounds continuing to ring in. Then radiation was tagged in, bigger and badder than chemo, beating the beast’s carcass with its own limbs. By the end of October, I sat in the examining room as the doctor continued to write without saying a word. It was excruciating. There was some mention of bringing chemo back into the ring. I dreaded him saying that. I never imagined myself being a lucky person so I already expected the worst. But suddenly he looked up and said that I was done! I remember him shaking my hand and the smile on his face. I had beaten the disease.
A few months before, while walking with the radiation oncologist down the hall of the clinic, he mentioned that my case of hodgkin’s with a sinus tumor was unique. He had only heard of one other case and it involved a relapse. I guess I belonged in a medical journal. Little did I know, 14 years later, that would ring even more true when the beast would return and gain a stronger foothold the second time. When it comes to this disease, I would become an enigma.