The Story So Far….

As people discover my condition they often ask how I got here. I figure it’ll probably be helpful to lay it out for everyone; also, I’m not that great at telling stories, so perhaps a written narrative will be alot easier for people to understand.

Anyways, this all started around the first week in September. I was going to class on one of those rare days when I got the urge and noticed I was having some pain carrying my backpack. When I got home I started feeling around my neck and found a little surprise in the form of a lump about the size of a golf-ball. For a while I just suspected it was an infection that would go away. However, I kept getting progressively tired. Eventually I became so tired that I revealed this to my mother during a phone conversation. Naturally, her motherly instincts kicked in, and I was soon on my way to PromptCare. They did some blood-work, which indicated a possible infection, and set me on my way with some antibiotics. However, they didn’t work.

So about a week and two skipped classes later my parents insisted upon a second opinion. Their initial idea was Student Health; however, those persistent rumours about automatic diagnoses of herpes got the best of me, and I insisted that my mother get me an appointment with a “real” doctor. On September 13th I had my appointment with Dr. Gazewood, who got a little suspicious and ordered some blood-work and a chest x-ray (to see if any lymph nodes were enlarged in my chest). Unfortunately, I discovered that Orndorff can be a tricky name for certain medical record specialists, and I wasn’t able to get my x-ray done until they got that all sorted out. When they finally got the results they discovered an enlarged node in my chest; all this really did though was raise more questions that needed to be answered. So a needle biopsy was ordered for September 29th.

As a brief aside, let me describe this procedure. Essentially a “fine” needle (which is about 2 inches long) is inserted into the neck to remove material that is then examined by a pathologist for signs of possible illness. The first three passes are all fine and well; they hurt no more than a simple innoculation. For some reason, though, the pain increases exponentially the last few times, and by the time they’re finishing up you can actually feel the needle moving under the skin. I apologize for the detail, but I feel that such surprises are rather undeserved and that others may as well learn from my experience.

Anyways, by this point everyone was preparing for the worst. By this point there should have been some other sign of disease, and nothing else was showing up. On October 2nd I met with Dr. Gazewood and was informed that the tests came back for Hodgkin’s, a lymphoma or cancer of the lymphatic system. All things considered, the moment was rather anticlimactic. My parents and I had already done the research and knew what we were facing. Naturally, cancer is not something you ever want to hear, but it is much easier to deal with when you know its coming.

At this point Dr. Gazewood and I essentially parted ways, and I came under the care of Dr. Desmore, my hematologist (a doctor specializing in blood disorders, which curiously lymphoma falls under). One of the benefits of going to school next to one of the finest hospitals in the country is that the odds are very good that you’ll find a doctor who’s interested in what you have. At the cancer center alone there are over 100 doctors specializing in every kind of cancer. Anyways, Dr. Densmore advised that I should have a CT-PET scan done on my body. This was scheduled for October 4th (they finally gave me an appointment).

I was told to come in at 9:30. Having not had a CT scan done since I was a small child, I had no idea what to expect and figured I could make my noon class. However, apparently a PET scan requires having a radioactive isotope injected into the blood stream, laying still for 40 minutes, getting up, laying still for another 30, then being strapped down and inserted into the scanner for about 50 minutes. By strapped down, I literally mean strapped. My feet were hooked with a rubber band, my middle was strapped to the table, and my head was wrapped (“as a reminder not to move”). Being so still caused my left hand to fall asleep to the point of having to work it for about 5 minutes afterwards, but that was worth having answers. However, I got another little surprise when they took me out, told me to use the restroom then come back into the room. Apparently my height is a disadvantage during such a procedure, as they then had to put in my feet first to scan from my hips down. Fortunately, I only had to be strapped by my feet this time. By the time all this was done it was 2:30; fortunately my noon class is about 200 people, so I was hardly missed.

The next day I was informed that I would have, in addition to my 9 o’clock appointment with my hematologist on October 5 I would have a full biopsy done. Naturally, this was of some concern, as I was hardly prepared for surgery, no matter how minor. Still, I slogged on, and we showed up at the Cancer Center at 9 on Thursday for my appointment. The doctor went over the condition with us in some detail, and we also got to see the results of my scan. Apparently the enlargement in my chest was of rather great size. Although it doesn’t harm my lung function to any great degree, it could explain why I’ve been short of breath and have had trouble with indigestion of late. It was at this point that we also discovered that my “biopsy” was really just a consultation. This was a great relief, but still, there was a question of why another biopsy. Apparently cancer specialists hate being wrong (and rightfully so). So after a brief appointment that was more or less just my doctor feeling up my neck, we had a biopsy scheduled for Monday, October 9th (reading day, huzzah!).

“Removal of the lymph nodes” was a phrase that caused a great deal of consternation back home. First of all, it was a bit of an exaggeration. Ok, it was more or less wrong. You need your lymph nodes, even if they are all out of whack, and they only take one, since there’s plenty throughout the body. Also, as it turns out, they didn’t even go for the big one, and in fact, they couldn’t take out the entire node as it was too close to the muscle, and I’ve gotten used to being able to raise my hand (that can be important in politics). Still, at the time it seemed like a helpful enough phrase, so that’s what my parents circulated around. However, in reality my procedure was a simple outpatient operation; I was originally offered options of either heavy sedation or general anaesthesia, but they figured it would be much easier to take me out completely. I apologize for anyone that might have thought I was in the hospital; I was able to recuperate on my futon. I was out and about by around 4 o’clock, and although the pain was not welcome it was certainly manageable. The great irony of all this has been that the most painful part has not been the immediate aftermath of the surgery or even the area around the scar, but rather removal of the bandage. They really went to town on the tape.

Anyways, on Wednesday I got a call from my hematologist’s assistant and got the confirmation of Hodgkin’s. If there’s any such thing as good news with cancer, it was that (I’ll explain more later.) So here we are. Maybe you learned a little something about the warning signs for Hodgkin’s, but as you can see, there’s not always alot to go on. Hopefully I’ve made everything clear, but as always if there’s anymore questions, feel free to ask. Knowledge is power.


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