The Adventures of the (non)Radioactive Pharmacist (volume 2)

In my last post I went into a fair amount of detail about the mechanics of  my radiotherapy. I tried to dispel the notion that my radiation therapy involved radioactive therapy...

But how cool would that be?

Yeah. That cool.

But... actually not really cool. A friend of mine had to undergo radioactive therapy for thyroid cancer just after the birth of one of her children. She was quarantined in a room and couldn't hug or even hold her baby while the radioactivity did its work. So - with all due respect to comic book characters - getting radioactivity sucks.

Good thing I'm not getting radioactivity.

So... what about the more human side of getting radiotherapy? What's that like? I thought I would take a little time to share some of the downsides of radiotherapy as I see it.

Dropping my pants every day of the week

I was asked to wear loose-fitting, comfortable clothes for radiotherapy before my first session. The reason stated is that radiotherapy can irritate the skin so by wearing loose, comfortable clothes the chance of skin breakdown is decreased. Little did I know that a far more expedient reason for this is that I have to lower my pants to mid-thigh for every radiotherapy session. 

The radiation beam will pass through my pants easily - that's not why I need to expose myself. But in order to line up my pelvis so the linac can get the location of the beam right and not, say, blast my spine instead means that the radiation therapists have to see the tiny little black dots they tattooed on my skin and make sure that they are aligned with the crosshair lasers in the room. I have one dot each on my hips - just where the greater trochanter at the top of the thigh sits - and one below my belly button, just above the pelvic bone. In order for them to see these clearly, I have to almost be fully exposed to the radiation therapists.

Now, I know that they are trained professionals (I'm one too, after all) and that they are only doing their job. They are very nice and they always make sure that my most private parts are shielded with a pillow case as I lay on the table so that they can line up my tattoos with the lasers. 

Still, by my count I have dropped my pants for eight different people in the past three weeks. While I am not shy nor prudish and I definitely see the practical side of this need, dropping my pants for strangers is not something I make a habit of. 

Empty bladder. Fill bladder. Empty bladder.

There is a very specific regimen I need to follow before each round of radiation to make certain that my bladder is filled to the same degree. I explained it last time, but basically it involves emptying my bladder exactly an hour before my scheduled appointment, then drinking exactly 750 mL of water in the next fifteen minutes (not twenty), then holding the resultant urine in while I lay under the linac. After fifteen sessions, my bladder is sort of like one of Pavlov's dogs, except that instead of salivating when a bell is rung, my bladder wants to empty itself every time I hear the whir of the radiotherapy table as it is lowered into the position it was when I first lay down on it five minutes earlier. 

Yep, every time I finish my radiotherapy, I make the straightest trip possible between the heavily-armed door of the treatment room and the bathroom in the treatment unit. I lock the door - hastily - and drop my pants again and sit on the toilet. I empty my bladder for the second time in just over an hour, and in that moment I feel very much like a man much older than my age. 

I get that it is important, and I understand the physiological and even mechanical reasons for it. Still, the fact that I have to do this every single day feels more than a little weird. Maybe I'm thinking about it too much, but the whole "full bladder" thing is just one more representation of the autonomy I have given up due to my diagnosis.

I never had to plan my bladder fullness before being diagnosed. I've never heard the whir of a motor and felt like I had to pee before being diagnosed. Again, it's a really minor thing and at worst an annoyance, but still, it's not something they tell you about in the information pamphlets they give you when you start your therapy.

The scary side of a very pleasant room

I've mentioned that the rooms in which the linear accelerators are situated are pleasantly decorated and lighted, roomy, and painted in muted but contemporary tones. If it were a meeting room in a fancy hotel you'd still be impressed - assuming the hulking piece of medical machinery wasn't taking up a big chunk of the floor space, that is. And I appreciate the effort that they went to, because otherwise the thought of going into a room with a linac would be really scary.

Still, it's hard not to notice the immense, 30cm thick metal door at the entry of the room. A door that thick implies that either something very valuable or very dangerous is to be kept on one side of it. Given that there's almost nothing that is in the room that could be removed without a crane or a huge amount of work, it is likely more the latter than the former that is the reason. I mean, I'm sure the linacs in each of the six rooms are worth a pretty penny but there's no way that I would be able to pick one up so it's pretty safe in there without a big heavy door. 

Apparently, the door isn't closed during my sessions. I'm guessing that either my sessions are so short that the added security isn't needed or that they are reserved for a different purpose - actual radioactive therapy, for example - but it is still something I notice twice a day on every radiotherapy day, going into and coming out of that room.

And then there is the fact that just inside that door is a sharp 90 degree turn and then a long hallway with the opposite 90 degree turn at the end to get into the inner room. That wall is really thick for an inside wall - heck, it would be thick for an outside wall! - and I doubt that its thickness was done for any architectural reason. No, that wall is thick because it is a barrier for the radiation that is beamed through my pelvis.

A barrier to protect the radiation therapists and the people waiting outside.

Yeah... the implication there isn't lost on me either. It's fine for me to have the radiation beamed through my lower back and hips, but there needs to be a bunch of physical barriers to that radiation to protect the people outside. 

I'm okay with it, again... but it makes the radiation seem a lot less innocuous than it feels (or doesn't feel; aside from the sound I still can't tell when the radiation beam is on).

Scheduling chaos

"What time do you get your radiation?" 

That well-meaning question was asked by one of my friends who is very concerned about me. They are very sweet and wanted to know so that they can send me positive thoughts when I am getting my treatments. And I love and respect this friend so I took the question seriously. The only problem is - I couldn't honestly tell them because my treatments are at a different time each and every day.

Seriously. Five days, five completely different times. Three weeks, each Thursday a different time. 

As of yesterday, I have completed fifteen out of twenty-five treatments. Each one was at a different time. Each of those days and times - as well as the days and times of my appointments with nurses and doctors - are written by hand and in pencil in a small yellow card stock folder. This appointment book is my life right now. So given how important it is, it's imperative that I know what's in it - at least for the next day, right?

Well, that would bebe a reasonable thing to think. Unfortunately, yesterday I neglected to do that.

"What time is your appointment today?"

This time it was my wife asking me. She is taking some extra time off work to be with me when I go for radiotherapy. I love that she is; it gives us more time together and it helps me to cope with any fear or anxiety about my therapy that I might otherwise feel if I was alone with my thoughts.

"Let me check," I said. 

I was certain that my appointment was in the afternoon. Because I am local, I was told my Friday sessions would always be in the afternoon because they try to get the out-of-town people done in the morning so they can go home for the weekend. In my head, my appointment was at 2:30 PM followed by an appointment with my radiation oncologist at 3:00 PM. I went and got my appointment card - which I call my Golden Ticket - from my sling bag that has also become a part of my new life and looked at the schedule.

I was supposed to see the radiation oncologist at 09:30 AM and get radiotherapy at 10:00. 

It was 09:32.

Yeah... that wasn't going to happen.

I called immediately and got my radiation session changed to 12:40 but I couldn't reschedule with the radiation oncologist. The people I spoke to at the treatment centre were wonderful - they are all wonderful - and I'm as certain that I am not the first person to have missed an appointment as I am that I will not be the last. And it's understandable, given how complex my treatment schedule is. 

But it is still embarrassing.

I put every one of my appointments for next week into my online calendar so that I could avoid another mix-up like this one before I did anything else yesterday.

Driving an hour and a half for five minutes in a pleasantly-decorated but still ominous room

Fortunately I am off work right now, focusing my energy on healing from surgery and from my ongoing chemotherapy and radiotherapy so scheduling isn't really a problem for me. Still, I live almost as far from the local cancer treatment centre that I could and still be in the same city. In the best case, it would take me about 35 minutes to drive to the cancer centre but on average it's more like 45 minutes each way. That means it takes an hour and a half for me to get there, and I am only in the linac room for about five minutes each time. 

Some weeks I have three or four other appointments - with the nurse or with any of the many doctors involved in my care - but at least one day of the week the only reason that I have to do this drive is to get radiotherapy. That means a big time investment for very little time in treatment.

Like I said, the time commitment doesn't really matter to me given my current situation. I also know that there are other people who are coming from the Gulf Islands or from further away on Vancouver Island, and for them the trip is much longer. One other patient I talked to one day was driving about two and a half hours each way each day for his radiotherapy. He had things to take care of at home and besides he couldn't afford the cost of a hotel room here for the week when he was getting radiotherapy.

It's definitely an annoyance for me, but for others? Yeah... there's a much greater cost.

Balancing meals with bathroom schedules

So, speaking of scheduling...

After my surgery I was left with a very understandable set of symptoms due to my newly-altered anatomy. Lower Anterior Resection Syndrome (or LARS) affects virtually everyone who has gone through the surgery that I have to a greater or lesser degree. Judging by what I have read on various forums and online commentaries, I would guess that my experience with LARS is neither the best case nor the worst case that I could experience. It seems... pretty average, actually. But that doesn't mean that my life is the same as it was preop when it comes to eating. As it pertains to radiotherapy ( and the chemotherapy that I have to take to go along with it), the most important factor here is when I eat rather than what.

Most times that I eat, I poop. It usually happens about half an hour after eating but could be up to an hour. And the chemotherapy that I take has to be taken with food, twice a day as close to twelve hours apart as possible. I therefore take mine at 08:00 AM and 08:00 PM, the morning dose with breakfast and the evening dose with the smallest snack that I can get away with so that I am not woken up in the middle of the night because I have to poop. In fact, given a choice I would not eat anything after 05:30 PM because I find that I am almost always woken up to poop overnight when I do.

So... what happens when my scheduled radiotherapy is at 08:10 AM?

I have to empty my bladder at 07:10 and pretty much immediately get in the car because it will take every bit of an hour to get to the cancer clinic at that time of day. I have to drink my 750 mL of water in the car by 07:25, but I will probably still be in the car at 08:00 when I should take my chemo. I don't want to take my chemo with me - because, you know, it's cytotoxic and I wash my hands after touching the pills so I really don't want them rolling around my car - so I eat breakfast and take the chemo before emptying my bladder. Working backwards in time, I would need to start eating breakfast by 06:55 in order to be able to have time to take my chemo and still empty my bladder on schedule. But that means that sometime around 07:30 - halfway or so to the cancer clinic - I will probably have to poop.

Sigh...

I can hold it fortunately - not everyone with LARS can - but if I went to the bathroom to poop at the cancer centre before my radiotherapy I would almost certainly pee at least a little,  making it impossible for me to get my radiation on schedule. So I hold it longer - which is not easy with my new anatomy - until after my radiotherapy. My Pavlovian "I gots ta pee" reflex would also be in full swing by then, giving me two reasons to get to the bathroom... 

AS. QUICK. AS. POSSIBLE.

And that's just one scenario, with one time. As I've said, every day my treatment is at a different time. What if my radiotherapy was at 04:30 PM? It hasn't happened, but it could. We would leave the cancer centre at about 04:45 and not get home until almost 06:00 PM because of traffic which is too late to eat my evening meal. So I face the choice of stopping somewhere on the way home to eat, eating a very small meal at home, or just skipping my evening meal entirely and eat a slightly larger snack. But eating a larger snack increases the chance that I will be woken up to poop overnight, so can't do that. But I have cancer and I need to make sure I keep eating properly, so skipping my evening meal really isn't a solid option.

Again, I never really had to think this much about eating before. I mean, I thought about eating a lot before surgery - like, a whole lot!! - but I never really had to think about when I ate. But now I do. Again, it's a small loss of personal autonomy and given the potentially negative outcomes I could have faced I will accept it.

But it still sort of sucks.

Tired. So tired...

Radiotherapy makes me tired. Mondays aren't bad - my eyes feel a little heavy and I'm a bit lethargic a few hours after my therapy. Tuesdays are only a little worse. It is now the Saturday of my third week of therapy and I woke up after eleven hours of sleep feeling like I had been up for fifteen hours already.

I know radiotherapy is supposed to make me tired. I even know why (spoiler alert: it's killing cells which my body works very hard to try to heal). But that doesn't really matter when it's a gorgeous day outside and I would love to go for a walk for coffee with my wife.

But I barely have the energy to walk to the living room.

Tomorrow will be fine. I will feel perfectly fine tomorrow and then back to only being slightly tired after therapy on Monday. But today, I am so tired.

Still, no complaints...

I would be lying if I tried to tell anyone that any of this crap makes me happy. But I would also be lying if I said it was terrible. What I am going through is, at worst, an annoyance. I have no pain, I am receiving incredibly good care from really wonderful people and that care is only costing me a pittance for parking and some of my time. Complaining about the care that I am getting would be almost criminally ungrateful and I am not an ungrateful person.

I will get through this. Just like I have said during every phase of my treatment, I will get through this. And it is all worth it.

I have two more weeks of radiotherapy before some more chemotherapy for the balance of six months. And after that, I will be cancer-free.

Sure, it's a bit of a hassle to go through radiotherapy. But the payoff at the end is tremendous.