Hodgkin's: One Survivor's Story, Part VI: Another CT and Radiation

From Part V

To start from the beginning, click here for Part I

When I had Hodgkin's Lymphoma, it helped to talk to other people to know I was not alone. When I went into remission, other people starting their journey were helped simply by talking to me. I was amazed by that. The internet is full of information. I hope in that cybersea, I can somehow be of help.

So if I remember, I had a chest, abdomen, and pelvic CT scan. I had to pick up that oh-so-yummy contrast again. I heard suggestions to put it in juice or something. But why contaminate the beverage?

I’m at the CT scan, I remember being injected with the iodine. And the metallic taste hitting my mouth which triggered a nauseous feeling. And as I was going through the scan the tech saw what was going on and periodically she would ask, “are you all right?” I wasn’t, but I nodded because I just wanted to get through with it.

The CT scan results came in and the doctor said there was some residual scar tissue. I never knew if it was that the tumor up and died, part of it did, or what. But next, we were going to do radiation. Now this would be done by a radiation oncologist, and we happened to get referred to one closer to home. This would be a different ride. The experience for me was more of a physical pain, whereas chemotherapy was very much an emotional pain.

I was to carry my patient records to the doctor. I saw my original CT scan results for this first time. It would have really freaked me out if I had seen it at the beginning.  The tumor must have taken up about 1/3 of the left-hand side of my body. The dimensions the report gave were 17 centimeters long (or tall, since it was going the length of my body), 10 centimeters wide, and 6 centimeters deep. I don’t know how I was even breathing, or living. One of the first signs of this whole thing was the coughing. I now saw what was going on: that the trachea was displaced 3 cm to the right, and that was the cause. I knew it was pressing against my trachea, I just didn’t know how much.

The first time we saw the radiation oncologist, it was in consult. He was telling me among other things that: I’d be tired (like playing basketball for 4 hours, he said), that he’d get about 10% of my lungs, but that I’d barely notice it. I’d have hair missing in places. I’d also get tattoos.

I was to undergo mantle field radiation therapy, which involves an extended area of the body.  And it's not used much anymore due to improved chemotherapy, like ABVD.  But ABVD was a little known chemo treatment back then.  The first step was to get me set up so that they could set up this mantle field. They had to take x-rays and mark out spots where my lungs were so they wouldn’t hit them, or most of them. So the technicians were drawing all over my chest and neck. I also received tattoos, Now these were far from decorative and were just dots and like all tattoos hurt like hell when I got them. And no, you can’t connect them to make something interesting; however, they do seem to form the shape of Optimus Prime’s head. Errrr....Anyway, I went to work in the afternoon all “tagged.”


Radiation was to be for three weeks. So here’s what goes on in radiation, for those of you who have not been through this fun experience. For my case, I was hit from diaphragm to neck, and shoulder to shoulder. That’s a pretty wide field. I lay on this..tray and the tech puts these lead alloy lung-shaped blocks on a tray right below the radiation source. 

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It looked close to this.

The form of radiation is actually X-ray only in much powerful doses than we usually get at the doctor’s office or the hospital. The technician adjusts everything, including my head, which he tapes my chin back. This is actually a pretty normal procedure. It was done so my neck and chin could get hit. After adjusting everything, the tech would leave the room. Obviously that was so he could control the machine in safety. I was the one getting nuked, not him. So I’m alone with this machine. I’ve got my hands on my hips as instructed. Then a low hum comes, like a fluorescent light only slightly louder. It lasts for twenty seconds. How do I know? Because there’s not much to do in there, so I counted....1 one-thousand, 2 one-thousand, etc. Counting also took away the thoughts of what this thing was doing to my body. The tech comes in, flips the machine around so the circular end is now underneath. 

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A machine on its way around.

He puts the blocks on again and lines it all up, leaves, and I get zapped again on the back.

The tech’s name was Doug, and he was a nice guy. He was the one doing all the treating. He seemed perfectly happy to answer questions and really seemed to understand what the patients were going through.  At least for me that was the case, and that might have been because we were about the same age  Not too far into the treatment, he showed me those lung-shaped blocks. It was here that I learned they were made out of a lead alloy. The alloy had a low melting point, and so it could be put into coffee pots to melt it down. And these blocks were extremely heavy.

At the beginning of week 1, I because nauseous for the first two treatments.  I think that I was still associating treatment with nausea.  As the week went on, my throat started getting dry. Now I keep the company of smart-alecs, which is okay since I am a bit of a smart-alec myself. I complained at work that my throat was dry. My friend responded, “Well there’s a way to fix that. It’s called water.” I actually though water would do it, but it didn’t. By the weekend, the throat started to be sore.

On Saturday, I worked out and I was a little mad and discouraged because I couldn’t finish my regular workout. Later, we were going to celebrate my brother’s birthday. I complained about my throat and my aunt said at the restaurant, “looks like it's Martinis for you, dude.” They helped but only temporary.

Week 2. The doctor had said the radiation was frying away 500 calories a day. I was now down to many a kids’ dream - a diet of milkshakes. High in calories, easy to swallow. But it was getting worse and I complained about it to Doug. He explained to me that it was like I had a sunburned throat. As I was starting to entertain the idea of spraying Solarcaine down my throat, he recommended that I get something topical, like Aspergum. And that seemed to do the trick, but it was only temporary. By the end of the week, I could no longer taste my food. So: Can’t taste, can’t swallow. That took all the incentive out of eating. But the doctor said, “you need to eat.”

Week 3. I don’t remember so much of it. That was probably because I spent a lot of it sleeping. The doctor said I would be tired, and he wasn’t kidding. My daily schedule that week was get up, go to treatment, take a nap, go to work, then go to bed. I had to have found some time to eat.  My throat was miserable, and I the outside of my skin was starting to burn.  Although the exterior was more of a suntan and not a sunburn.  Looks at this point were very deceiving.  I suppose I squeezed in something to eat.

After radiation was finished, it took a while for some of the side effects to go away. The facial hair around the chin and neck was completely gone by the end of treatment. So I didn’t have to shave there, and I figure I’d probably develop pork chop side burns if I just let everything grow out.. But I didn't I’m just sorry there’s no photoshop for this scenario. I started shaving to try to jump start it. Regardless of whether it was effective, the facial hair returned in November.

For months afterward I’d have this really funny tingling sensation shooting down my sides. The doctor told me that was going to happen, and it ended about December.

The throat wouldn’t stay sore but it would stay dry. The doctor told me this during treatment. Today if you eat with me, you’ll notice I have a liquid in place before I start eating. I have to be able to wash the food down. Otherwise it kind of gets caught, not necessarily in my throat but also in my esophagus.

Now come the follow-ups.  We're not done with the story yet.