The road to radiation seemed… to… take … for… ever….. Seriously. From the very first meeting I had with the oncologist, radiation seemed to be this very mysterious process that she didn’t really want to discuss at length. I think this was for a variety (of what I’m sure were very good) reasons. As a newly diagnosed cancer patient you are bombarded with information. You have all these you have to do to get ready for treatment.
Biopsy… check… biopsy again… check… port placement… check… egg retrieval… check… etc. etc.
And I think she wanted me to stay focused on the step at hand and not the step 3,000+ steps further down the road. Totally understandable. But I really wanted to plan plan plan. I really had no idea what to expect from it. I also didn’t know very many people who had lymphoma. I researched on forums but everyone seemed to have different experiences and very few people had been diagnosed as early as I had. The one Hodgkin-survivor I knew had it nine years ago, and she only underwent chemotherapy. So I had it in my head that maybe if my scans were really awesome I wouldn’t have to have radiation. Unfortunately that was not the case. Which is why people always say not to compare your situation to anyone else’s situation, every situation is different, medical recommendations change all the time, yada yada yada.
On August 16 I had my last chemo treatment, and on September 6 I found out that my PT Scan was “pet negative,” meaning that the cancer was no longer detectible. I was totally stoked thinking, “Woohoo, I’m cured! No radiation for me. Right?!” In my situation that was not the case. Apparently with the form of Hodgkin’s that I have, Nodular Sclerosing, there will always be a residual mass left over. The purpose of the radiation in my case is to make sure that within that mass there are no minute traces of cancer flying under the radar.
So I started another check list of things I needed to do to get ready for radiation. The first step was to meet my radiation oncologist the following week. My main oncology facility is not set up for radiation at this point, so I was referred to another center in my area. I met with the new doctor and had the whole radiation process demystified at long last. We talked at length for more than an hour. I’ve never had a doctor spend that much time with me one-on-one, and it was very refreshing. During our heart-to-heart, I found out that I would have 12 sessions of radiation that last about 5 minutes each. I had been anticipating upward of 30 sessions, so this was really great news. My radiation would take place daily on weekdays and would take just over two weeks to complete.
Again, I was stoked,”Woohoo, I’ll be done in two weeks!” Again, it didn’t quite work out that way. She wanted me to wait a full six-weeks after chemotherapy to begin radiation, so I wasn’t able to begin radiation for about two more weeks after that appointment.
In the mean time, I went through a series of other steps. I got tattoos. That’s right. I’m now all “tatted” up. I have six or seven now. In fact, you can see two of them in this photo:
Yeah… totally anticlimactic, right?
So basically I had to go for a “positioning scan” the following week on September 18. Which meant I had to have an MRI. For anyone fortunate enough not to know what that means, they put you in a machine/tube like this and take photos of your “innards” while it makes whirling and clicking sounds.
Using the images, a nice nurse tattooed several freckles onto my skin in strategic locations. I have three down the center of my chest, two on my shoulders and two on my sides. I think there might be a few more, but they’re seriously easy to lose track of … they are that small.
The tattoos are used to keep my body aligned so that the radiation is hitting exactly where it needs to. People who had Hodgkin’s 20, 30, 40 years ago received much higher doses of radiation and chemo, which led to many of them having secondary cancers, fertility issues, etc. later on in life. They have significantly reduced these doses for my generation in order to compromise as little tissue as possible. The tattoos help them do that.
I also had a mask fitting during the same appointment. The nurse put soft plastic on my face and then let it harden, almost like having a clay mask done at a spa. It kind of feels like having a tennis racket help up to your face, except its extremely form fitted.
I went into my first radiation appointment on September 25 ready for battle in my Team Laura shirt.
I, of course, had to immediately disrobe. But c’est la vie.
During radiation the mask is bolted to a table so that my head doesn’t move. This serves the purpose of keeping me aligned properly during radiation, and also holds my chin up at an unnatural angle so that less tissue is in the radiation field.
I will admit, the mask was an issue in the first session. I was trooper up until the very end and started feeling really claustrophobic. The first session they had to do preliminary x-rays to make sure everything was where it was supposed to be, the tattoos were done properly, etc. I felt like I was in the mask for half-an-hour. I even got another tattoo in the process. My guess is that it was actually less than that, but it seemed to take forever.
Luckily all of the subsequent session have been much quicker. I’m usually in the doctors office for less than 30 minutes. I’m only in the mask for about five of those minutes.
I often think about how rough it is for kids to go through these treatments. As hard as it is for a 25-year-old to do it, I can’t imagine what its like for a toddler or small child. I really have so much respect for them. Whats really cool is that the child oncologist at my center does really cool things with their masks. He makes them look like the super heroes they are. Or he’ll make them become cartoon characters. Whatever makes them more comfortable and happier.
I really respect the fact that he paints them himself and doesn’t get an intern to do it. I think it really speaks volumes about who he is as a doctor and person.
I had my ninth radiation session earlier today and will be done by the middle of next week! Which means I will be done with treatment and am free and clear until my next PT scan in December. I will, at some point, have to have one last surgery to have my port taken out. But again, we haven’t gotten there yet and I’m not sure when it’ll happen.
Right now, all that matters is that I can feel a party in my future and I’m ready to celebrate with those I love!