Radiation

I'm afraid I have no cute title for this post

A pulse. A simple sign of life. A word we use to describe anything from the steady beat of a heart to the energy that seems to pulsate through various places, cities and countries. In fact, it’s perhaps the thing that I most enjoy about travel. Digging into a place to become at least passingly familiar with its culture, people and that intangible something that seems to make a place come alive.

Ironically, it’s also the one thing I never felt I got to know about my hometown, Houston. I grew up in a suburb of this massive, sometimes confusing, true melting pot of a city. I also left Houston at the age of 18 and aside from visits for holidays or breaks (again, spent in the suburbs), have never really looked back. In these last 10 months, I’ve had the chance to finally get close enough to at least hear that pulse of Houston, if not fully understand it. As much of a nuisance as it can sometimes be to drive the 25 miles from my parents’ house to MD Anderson, doing so has allowed me to start getting that feeling.

Now, with radiation, I often stay at my sister’s apartment, which is even closer to the “heart” of Houston. In some sense, it’s a tease. I’m close but not in a position to enjoy it or partake of it. While I’m likely to leave Houston if I’m able to after treatment is over (the weather is simply not to my taste), I am appreciative of the fact that I can finally say that I’ve gotten to know Houston in a way that I’ve never had the ability to before. And now that I’ve mentioned the “r” word, I suppose it’s only fair that I provide some insight into what’s happening there.

Deciding the pace of radiation

As I mentioned in my previous post, I still have to get radiation done, irrespective of the great results I had on chemo. To that end, I had an initial consult and simulation originally scheduled for 7/12 with my radiation oncologist. Unfortunately, due to an insurance snafu, I was unable to have the simulation that day, but did at least get the chance to meet with my radiation oncologist for what was, as always, an interesting discussion about my treatment options.

One of the things that drew me to MD Anderson, aside from the fact that it’s one of only four places in the US to have a dedicated IBC clinic, is the simple fact that it’s a research institution at heart. It’s meant that I’ve had access to some of the latest options available (e.g., getting a prophylactic lymphovenous bypass done) and a team of doctors who recognize that their field is constantly evolving and that the approaches to care they are confident in today may well be completely different tomorrow.

But it’s also meant that as a patient, I’ve had to learn that an institution whose pulse is driven by research also lends itself to sometimes more complicated options and decisions for me. With cancer, there are very few “right” answers when you get down to it. Even the need for chemo for certain types of cancers is being questioned (no, not for IBC). Simple is simply not a word that gets to exist in your vocabulary as a cancer patient.

The initial discussion with my radiation oncologist was no exception to this rule. While trimodal treatment (chemo, surgery and radiation) is the “standard” for the treatment of IBC, there are variances to how this standard is approached. As more research is done, doctors focused specifically on IBC regularly get together to discuss how either a) a standard should be established and/or b) an existing standard should be changed in light of new discoveries. There isn’t always consensus about the standards, however, and radiation is just one example of where such a consensus doesn’t exist for IBC. Due to its aggressive nature, MD Anderson has opted to provide IBC patients with twice daily radiation but it is one of the only places that does so.

My radiation oncologist mentioned that a study recently concluded that outcomes for women with “regular” breast cancer who were treated with once versus twice daily radiation were only (at most) marginally different. Receiving more radiation as you do with twice daily radiation, however, does carry risks and the risks seemed to outweigh the benefits in the outcomes. There are two reasons why twice daily radiation might still be recommended: 1) there is residual cancer left after surgery or b) you are young (generally 45 and under).

Obviously, the same information is not available for just patients with IBC. But based on the results of that study, my radiation oncologist was debating between two treatment plans for me. On the one hand, I had a great response to chemo so completing once daily radiation for 6.5 weeks was an option (and one that I would be given at most any other hospital). On the other hand, I’m well below the “young” threshold and might benefit from twice daily radiation for 4.5 weeks for the long-term, though it does increase radiation exposure related risks.

She was inclined to pursue the 1x/day for 6.5 weeks approach. Given the fact that I qualify as “young” and the benefit of twice daily radiation appears to be in the long-term picture, I expressed interest in actually doing the 2x/day for 4.5 weeks approach instead. My medical oncologist informed me that she planned to present my case to the nine other radiation oncologists with whom she worked to get their input, as long as I was open to their suggestion. Soliciting more opinions is often a double-edged sword in that you typically get a different opinion from each person that you speak to, but doing so helps refine your opinion that much further. For once though, there was a unanimous response which I received within a few days of our initial conversation – they wanted me to get radiation 2x/day for 4.5 weeks.

Simulation

Before actually starting radiation, you must first undergo a simulation. The simulation is needed in order to make a mold of the position you must hold each time, for them to map your body and place drawings on your body that cannot be washed off for the duration of radiation, and to help the team build the actual plan and model to ensure that the radiation enters the body properly and targets the desired areas. While my body might look like a poor man’s Jackson Pollock painting with all of the permanent marker drawings on it right now, I should count my lucky stars that I’m getting radiation in this day and age. Previously, patients who received radiation would actually receive small but permanent tattoos to define the markings required for the radiation technicians. I think I will have enough permanent physical (and emotional) scars to remind me of this year. I cannot imagine what it is like having tattoos on top of that to remind one of radiation.

My simulation was delayed by one week from 7/12 to 7/19 due to the insurance issue I ran into, but was completed on 7/19 if only delayed by a few hours. As an aside, one of my frustrations in these many months of going to MD Anderson is time. Clinics, tests, etc. almost always run behind. While I can understand one hour delays, I’ve even waited upwards of three hours and more. On the morning of the 19th, I had a procedure to have my port removed, which ran late and over by 45 minutes. Despite my repeated attempts to communicate my upcoming radiation simulation appointment, I was told the same thing I’ve been told many times over the months, “They can see in the system that you’re here at MD Anderson and still occupied with another appointment. Everyone will adjust.” While this statement is factually correct, it doesn’t take into account that the patient gets punished in the process. When I first started treatment at MD Anderson, I very quickly learned that I would only know the time that I would arrive at the hospital, but would have no way of predicting what time I would leave, irrespective of what appointment times appeared on my calendar. I joke that coming to the hospital is a bit like coming to Vegas, albeit a pretty shitty version of Vegas.

But in all seriousness, I feel that I, as a patient, have a responsibility to show up prepared, informed and on time (when it’s in my control), but in exchange, my time should also be respected. I have too many friends and a sibling to boot who are physicians. I have an appreciation for at least some of the challenges involved in keeping clinics running on time and can understand that delays occur, especially with how many patients need to be seen during clinic hours. But there has to be a way to provide quality care while also keeping the patient’s perspective in mind too. I don’t have an answer here, but I do think there’s room for significant improvement on this front.

On the 19th, I essentially missed my originally scheduled simulation appointment of 10 AM and was rescheduled to 2 PM, which would have potentially conflicted with another appointment that I had with a GI doctor. With lots of juggling and running around, I was able to squeeze everything in. These kinds of situations happen regularly. It makes days at the hospital long, unpredictable and mentally and physically exhausting. I feel like I’m always primed for the next appointment and I find getting anything productive done, despite the best of intentions, incredibly difficult.

For the simulation itself, my biggest concern was the fact that I needed to keep my right arm raised (bent with my hand behind my head) for the duration of the simulation, which lasted anywhere between 30-45 minutes. I had religiously performed my exercises prior to the simulation and knew I could manage 15 minutes in the same position, but I wasn’t sure if an extended 45 minutes would be manageable. Luckily, I was able to hold the desired position and we managed to get through the simulation without too much issue.

Radiation

As for radiation itself, it officially started on 7/30 with my first appointment. Due to the fact that I receive radiation twice a day, I must have at least six hours between each radiation session, which means that my first appointment each day tends to be very early (as in 7 AM).

The appointments themselves pass by fairly quickly. When I enter the room, the team positions me on the table/bed, tapes my arm, and attaches a device to my stomach that monitors my breathing. Holding your breath while you’re receiving radiation is critical since they’re obviously targeting an area involving my chest and they want to minimize impact to the lungs. After positioning me for the first time, the team then exists the room to actually provide the radiation.

There is a screen where I can see my breathing (represented by a yellow bar) along with a blue bar that is the target for me to hit and hold when they ask me to hold my breath. When they are ready to “zap” me with radiation, they speak over a mike, which I can hear in the room, and ask me to hold my breath. I must take a deep enough breath that the yellow bar enters the blue bar, where it becomes green, and then hold that for the duration of the radiation “zap”. The zap of radiation can last anywhere between 2 seconds to 20 seconds. Depending on the position, the treatment plan, etc. I can receive a zap of radiation while in the same position as many as three times. The team then re-enters the room to move the machine and me around and/or to add attachments either to the machine or to me depending on which “position” they are focused on. In total, the team has to position me at least five to six times and they must leave the room each time as they obviously don’t want to be exposed to the radiation.

I would go so far as to say that more time is actually spent on positioning and repositioning me and the machine than the actual amount of time that I receive radiation. Overall, the appointment passes fairly quickly, but the fact that I have to hold my breath and that the team is constantly moving around means that any hopes I had of taking a nap during my radiation sessions were very quickly dashed. While it can feel isolating to be in the room by yourself, they at least pipe in music to keep you company (and you can request what you’d like to listen to if you so desire). The technicians probably complain more often about me moving to the beat of the music than anything else (just kidding!).

One of the most common questions I’ve received about radiation is whether I feel anything when it’s happening. In the first few days, I would have simply told you no. It’s similar to receiving an x-ray in that sense. After the first three or so days of radiation though, when my skin has started to get fatigued from receiving radiation, I have noticed that I can actually feel something, but it’s difficult to describe. I imagine that if we could feel heat waves shimmering in the distance, it would feel similar to how my skin feels immediately after receiving a zap of radiation. It’s not painful per se, but it’s a reminder that I am putting my body through yet another stressor.

I’ve now entered my fourth week of radiation, and have been holding up okay so far. Fatigue from the radiation is starting to set in, but it’s been much more manageable than the fatigue I had on chemo. I simply rest after each radiation appointment to allow my body time to heal and try to make sure I get at least eight hours of sleep, preferably more. In fact, I’m independent enough to be able to drive myself to and from the hospital on my own every day. I cannot emphasize enough how much it has meant to me to regain a bit of my independence. It helps me feel more like myself in an intangible way that is impossible to describe.

My skin has also been holding up decently well, although it is starting to burn. I had actually started developing hyper pigmented spots within the first week of radiation and was seriously concerned about how quickly my skin would burn. Thankfully, it managed to withstand the onslaught of radiation without issue for the first two weeks. In the third week, however, is when my skin became tender, sensitive and has started to actually split at the point of the incision in one corner.

As I enter these last five days of radiation (my last day is on 8/28!!!), I will be receiving a series of “boosts”, which are designed to target the skin more superficially as that tends to be one of the first places of recurrence for IBC patients. Unfortunately, that means that my skin will get more burnt. The nurse was concerned when she saw that my incision was superficially split and that I would be receiving boosts, but it will simply be one of those things we need to watch and manage. Not receiving the boosts is not an option. It’s also important to know that side effects from radiation can continue to appear for two to four weeks after you complete radiation. PT has even told me that tightening as a result of radiation can still occur for up to three to five YEARS after completing radiation.

While the further reacting of my skin and long-term side effects of radiation are obviously on my mind, I’m still much more focused on getting through radiation. I am very much counting down the days to being done with it. 8/28 cannot come soon enough! Of course, this begs the question – am I done with treatment? While I would love to be able to answer this question, I’m unable to do so at the moment. As I mentioned, some additional information about my cancer has come to light, which I will be discussing with my medical oncologist later today, 8/22. It is a complicated topic, however, and merits a dedicated post of its own, which will follow soon.