We were surprised on Thursday to see that the pictures from my most recent CT Scan were not that different from the ones taken two months ago. There was a slight reduction in size, but there is still somewhat of a mass in my chest. Apparently it will be a little souvenir that I will carry around with me for the rest of my life. The oncologist described it as  hard fiberous scar tissue. A lovely thought.

The PT Scan later next month with confirm that it’s scar tissue as well as help determine whether or not I’ll be undergoing radiation therapy after I’ve finished chemo. There are two schools of thought according to my oncologist. One is that additional radiation therapy should be administered after chemo if the tumor was larger than 5 cm. The other is if the tumor was larger than 7 cm. Mine was about 6 cm, so we’ll probably have some kind of consultation with a radiation oncologist to see what they say, though we would like to avoid having to go through radiation if at all possible.

More on that as it develops.

Well, I’m done with chemo, but I may not be completely done with cancer treatment yet. We’ll find out in a little over a week.

On Thursday I’ll have a test called a PET Scan (or PT Scan). I had one of these back in September as part of my initial diagnosis and staging. I’ll talk about it more after I go through it again, but basically they inject me with a radioactive glucose and then stick me in a tube and take pictures. Areas that are still “cancerous” will show up as glowing spots in the results.

So that test is coming up on Thursday. I am assuming though that we won’t hear about the results until we meet with oncologist on the following Thursday (the 31st). Depending on what (if anything) comes back in the PT Scan results, a decision will be made about whether or not I’ll have to undergo any radiation treatments. I have to admit, I don’t fully understand the process of radiation, but I do know that I don’t want it. I just want to be done. So, we are holding out hope.

We are back from our blog hiatus, but from here on out I’m intending to go to a 3 days a week schedule, posting on Monday, Wednesday, and Fridays. 5 days a week for the last 6 months was fun, but it started to feel a little forced to me at times, so we’re going to try 3 days a week for a while.

NOW, lets talk about Radiation:

Much has happened over the last two weeks in regards to the next stage of my treatment for Hodgkin’s lymphoma. But in order to make the next couple of weeks make sense, we all have to learn a bit of new vocabulary.

In the United States, radiation is talked about in units called “Gray.” Just like the rest of our units of measurements, we like to go our own way. We use Gray and the rest of the world uses Sieverts. That’s just how we roll. To quote Grandpa Simpson “The metric system is the tool of the Devil! My car gets 40 rods to the hogshead and that’s the way I likes it.”

Newspaper clipping of Abe Simpson

When we first started talking about Radiation with my original oncologist, she told us that we could expect 4 weeks of daily radiation treatments. During the course of a 4 week treatment a patient would receive a total of 40 Gray of radiation. Treatments are every day M-F and during course of 5 days a total of 10 Gray are given.

A fun fact: A full body exposure of 5 Gray in a single dose at once is fatal. SO it’s important to note that when given medically for the treatment of cancer, we are usually talking about 2 Gray of radiation given at a time via extremely focused beams, delivered to precise areas of the body. In my case it would be the tumor (or ex-tumor) in my chest, as well as a few of the cancerous (or ex-cancerous) lymph-nodes in my neck and chest.

Typically, the point of these daily doses of radiation is to kill and shrink tumors. With some form of cancers radiation can be more effective than chemotherapy and is the primary form of treatment. With many more cancers its used in conjunction with chemotherapy. In my case it seems that it is being considered as a preventative measure.

Basically (and this is the doctor’s words, not mine) I had “a beautiful response to chemotherapy.” It worked. It worked well. And in fact after looking at my charts, and the before and after PT Scans, it seems that it worked even better than he would have expected it to. But, as I’ve stated before, we’re not out the woods yet. There is still a chance that there are lingering cancer cells that were not entirely killed of by chemo. These cells (should they exist) could have the potential to spark a relapse.

Relapsing would be bad. Not to be a Debby Downer, but the chances of “long-term survival” are greatly reduced when a Hodgkin’s patient relapses. And evidence suggests that chemotherapy is often not as successful the second time if a patient has relapsed. Obviously, this is something we’d like to avoid. So radiation is often used in patients such as myself who had advanced stages of Hogkins (Stage III or Stage IV, like I had) and/or patients who have tumors larger than 5 cm (the large one in my chest was about 6cm). The idea is that the radiation penetrates the tumors throughout and kills any lingering cancer cells that may have escaped the clutches of the initial chemotherapy treatment.

Looking at that, you’d think “Why wouldn’t you do radiation? You don’t want to relapse do you?” Well, there’s another side to it. The side-effects of radiation. I’ll get into the immediate side-effects (fatigue, irritated organs, skin damage) later, what we were worried are the long term side effects. The increased chance of the “other cancers” that radiation can cause, or as the doctors call them: secondary malignancies. Good times. More on those later =)

Over the course of the next few posts I’ll go into further details and bring everyone up to speed on how it’s going to work and what’s happened so far. But for now I’ll just leave you with fact that we’ve decided to do it, and we’ll be starting at some point in the next 2-3 weeks. There is a lot that goes into the preparation and creation of a treatment plan, and we’ll let you know how it all unfolds (or how it unfolded)

I’ll get into it more on Wednesday.
‘Till then!

(side note: There has been much talk in the media about radiation and radiation exposure due to the ever worsening conditions in Japan. Here is an interesting chart that’s been circulating the internet. It was put together by the man who does the webcomic XKCD and puts some general radiation doses into perspective)

Our first meeting with the Radiation Oncologist was last Tuesday, 12th. We checked in, spent some time talking with his nurse, and then we met with the man himself. He started off the conversation with some GREAT news. There was a German study published in 2010 which indicated that radiation amounts as low as 20 gray were as successful as doses of 40 gray (the previous standard) for treatment of Hodgkin’s disease. 20 gray of radiation would only 2 weeks of treatment! Much better than the 4 we had originally been told to expect.

Right off the bat, we were on board. Much of our apprehensions around radiation were based on what we thought was going to be a much higher dose for at least twice as long. So after discussing things with him for a bit, we signed on.

We made an appointment before we left to come back on Thursday to start the process. Before I can start, they need to run a series of tests including additional CT Scans before they can literally “map out” my course of treatment. It’s a two week process where several people look at my images and map out BY HAND precisely where and how (and from what angles) I will be radiated.

That appointment on Thursday was unlike any I’ve had so far. I’ll get into the details of everything that was involved in my next post. But for now, the important part of Thursday’s appointment was the doctor wanted to talk to us when I was done with my test. In my experience so far, when you are there for an appointment, and are not scheduled to meet with the doctor, yet they want to talk with you before you leave, it’s probably not a good thing. This was no exception.

He sat us down and said that he’d been thinking. After we met with him on Tuesday, he went back and took another look at the study which indicated 20 gray was as effective as 40 gray in the treatment of Hodgkin’s. However, after looking closer at the the study and looking at my specific case, he just didn’t feel that 20 gray would be sufficient. That study seemed to focus on early Stage I and Stage II patients (I was probably Stage IV). He now wanted to do 30 gray or 3 weeks.

We’d have to make a choice.

You may not think there is much of a choice to make here. It may seem clear to you already, but for us it just didn’t seem that simple. We were questioning even doing radiation to begin with, but for some reason his initial proposal seemed right to us, but this proposed change made us question.

We hit him with additional inquiries about probability, and we rehashed much of what we had talked about in our first meeting. None of the numbers that I’m going throw out here are exact. He’s a very scientific man, and he was reluctant to even give us numbers at all, but this is sort of run down of fun facts that we were able to pry out him.

• In general, when Hodgkin’s is successfully treated with chemotherapy, there is an approximately 60-70% chance that there WILL NOT be a relapse.
• BUT, additional Radiation treatments after chemo seem to increase that chance to closer to 70-80% of all cases.
• HOWEVER, with radiation comes additional risk of developing other cancers down the road. They call these “Secondary Malignancies”
• BUT, the greatest risk factor of developing a secondary malignancy is the fact that I’ve already had cancer, and that I’ve undergone chemotherapy treatments. These two facts alone mean that I’m at a 15-20% greater risk of getting cancer than the rest of the population.
• HOWEVER, we’re talking about a 5-10% increase here. At 20 gray, I might be at a maybe 20-25% greater risk of a different type of cancer down the road.
• HOWEVER, with 30 gray, it could very well be 25-30%

Once again, I want to stress that these numbers are not exact. They are approximate examples given to us by a reluctant man because we begged. But they help to paint a picture of what we are talking about here. Like most things in life, I’m reminded of the recent XKCD webcomic (the author has also been dealing with some medical issues in his family as well):

30 gray, still isn’t bad in the grand scheme of things. As of last year, they would have used 40. And 10 years ago it would have been over 70. There are many cancers (he used Prostate Cancer as an example) which are still treated with that much radiation and others are treated with even more. So at 30, I SHOULD be count my blessings. =) But I’m not.

Another thing to keep in mind is that 10 years ago I would have been given TWICE the amount of total radiation and it would have been administered to a larger area of the body. The technology has gotten much better since then and now that they can really focus in on a much more precise area of the body. But all of this brings up a point that we keep coming back to: if that’s what they did then, and this is what they do now, what will they do “tomorrow.” Translation: 10 years from NOW will they find that they can get away with 10 gray? If procedures that seem barbaric now, were once the standard, what will we be saying about possibly unnecessary radiation treatments in the future?

We kept rolling these thoughts in our heads over and over. I say in our heads because surprisingly we didn’t really talk about it. Not with each other, at least. I think that deep down, we both knew that we were still going to do it, and that we would accept the doctor’s second proposal and do 3 weeks of radiation (for a total of 30 gray), but for some reason we were stubborn. I think we were convinced that I was a decision we had make, and that doing so gave us some form of power and choice that we never had when I was diagnosed. Even though we both knew that there is no decision to make. You do what you can to beat the devil you know NOW, and you worry about the devil you don’t know later. We seemed to think that we knew better despite the fact that my doctor has been doing this for almost as long as I’ve been alive.

I think we just wanted to pretend that we had a choice.

It wasn’t until after we had caught some friends up to speed at dinner on Friday night and then when we talked to my sister on Sunday morning, that we realized there really wasn’t a decision to make. Or if there was, that we had already made it. Saying it out loud made it pretty clear. We’ve listened to our doctors so far, why would start doing things against medical advice now. In fact, we were always going to do it. Even if  it had been 4 weeks, or 6 weeks, or whatever. If you go back through the blog you’ll see that I’ve been protesting this from the beginning. Stating that I didn’t want to do radiation, and that it would be a decision that Christine and I would have to make after weighing our options. But in the end, chemo was a choice as well I guess. I didn’t HAVE to do it. Technically I chose to do it. There were risks, there are side effects, and there will be consequences for the rest of the my life for having gone through it. But it’s not like I wasn’t ever not going to do it. It’s the same with radiation.

3 weeks. .

… the choice is made. I just hope we’re doing the right thing.

That second appointment with the Radiology Oncology department featured one of more intense medical procedures I’ve had during this whole ordeal. In many ways, even the 2 surgeries I’ve had (the lymph-node biopsy and the chest-port installation) were less intimidating that this was, but mostly because I was drugged for those. I was reminded of the card that Emily included with the holiday gift from everyone. It said:

Your journey has molded you for your greater good, and it was exactly what it needed to be. Don’t think of it as lost time. It took each and every situation you have encountered to bring you to the now. And now is right on time.

– Asha Tyson

I’m not saying it was THAT horrible of an appointment (really I just like the quote, I think of it often) but it was certainly one of those days where I was glad for everything that had come before it.  As I said to the technician I was working with: If this had been the first thing I’d done, it might have seriously freaked me out, but I’m not phased by much anymore.

Forgive me for getting a little dramatic here, I should just get on with telling you what this appointment was all about.

I will be receiving daily radiation (M-F) to my chest and neck. Its very important that I remain still during each procedure, and it is very important that I assume the same position every day for the treatment so that the same areas are radiated precisely with as little damage as possible to the surrounding tissue. So, in order to facilitate this, I will be wearing a “mask” over my head, neck, and chest that is then literally attached to the table in order to hold me in the same place and position each time.

When I receive treatment each day it will only have to be “strapped in” to the thing for a few minutes. They have to make the mask first, and once they shaped it around my face, neck and shoulders I had to stay in it while they took a series of CT Scans which they then used to map out which areas will be radiated. All in all I think I was strapped to that table for about 30-40 minutes while they made the mask.

This isn’t the actual mask that made for me, but it gives you an idea. Mine is bigger, as it covers my neck and part of shoulders. This was the example one that was in the nurses office:

So making sure I’m in the same position everyday is serious. To top if off, I was also given a small permanent tattoo in the middle of my chest. It will be used as another reference point to ensure that everything is lined up correctly. It’s not as big a deal as it sounds. It’s smaller than some of the freckles that I have, but still, it’s a tattoo, I’ll have it forever.

This is a self-portrait:

The little black thing I’m pointing to is the tattoo. The big brown thing is a giant freckle that I have, and the weird white thing which completes the triangle is a scar from the first chicken-pock that I had when I like eight or something.

Sure it’s small, but now can I say that “I’ve had some ink done…” Maybe I’ll have the tattoo expanded and  turned into a swooping eagle across my chest or something BADASS like that when this all done.  That’d be cool!

So yeah. Needless to say, it was intense day.