More than just tired

I hadn't planned on writing anything today but I've been feeling tired and it's affecting me in ways I'd forgotten it did so I thought I would write about that. I could pass it off as being cranky, which is how I think it comes across to other people, but it feels a bit different than just being cranky. To me, I'm reacting in "easy" ways, following well-established emotional pathways because I'm too tired to try to react in another way.

There are two main emotional pathways at work: anger and depression. For much of my life I've had anger issues; pretty much any negative emotion I might have translates into anger, and although I've done a lot of work in that area, those original pathways and reactions are still there and easy to find. Therefore, when I'm really tired and something doesn't work like I think it should, I feel this huge anger. Some of that reaction is that I have limited energy and can only imagine things going one way; any deviation from that and poof! I'm feeling angry.

I've also been depressed for much of my life, so that's an easy pathway to find as well. After my primary breast cancer in 2000, I had huge cognitive issues and spent a lot of time feeling really stupid. For whatever reason, that particular reaction is now the "easiest" one. If I get mixed up, I automatically assume it's me being stupid and that just leads to thoughts like "I can't do anything right" and "I feel like I'm pointless" and "why am I even here?" and poof! I'm feeling depressed.

This isn't to say that these reactions are always there, or that I stay in them because I have done a lot of work in these areas. But they are the "easiest" reactions and it takes work to pull away from them and it's harder to do that work when I'm really tired. At least I can see these reactions happening, which is a big help because then I know that my brain is just taking the easy route.

And... done!

Whoo hoo! Radiation treatment is finished! When I got home after treatment this morning I did a song and dance about being finished radiation because I was so happy.

In all my excitement about finishing treatment, I forgot to take my morning painkiller and I am paying for that now with pain and a woogly back. It's not the end of the world but I do feel like an idiot - I can take care of myself, really I can. Really.

Today's treatment went really, really well. I didn't have to be told to breathe deeper at all and I did a great job of holding my breath. I made sure to fully relax after they got me into position, before they started treatment, and between breath holds. It turns out that all that meditation and mindfulness training I did comes in handy!

I didn't do anything crazy to relax - there was no "breathe in through one nostril and out through the other" (although I can do that). I just closed my eyes and imagined myself being heavy and sinking into the surface... as if I was lying on a towel on a sunny beach. Then I imagined the CT scanner "whoosh-whoosh" around me and imagined myself sort of rocking and floating to that noise - kind of like I was rocking in a straight hammock and on a magic carpet. Weird, I know, but somehow that worked for me.

When I finished the nurses told me that the radiation will continue to affect me and that I can expect side effects like difficulty swallowing due to radiation affecting the esophagus and fatigue. I told them about the prescription I didn't wait for and they said it would be in my file so when I need it to just call in and ask them to send it to the pharmacy. They also said to listen to my body and sleep when I need to.

I am very, very tired. Some of that is undoubtedly the forgotten painkiller, and some of it will be having gotten up for my 7am appointment, but there's a component of it that feels like radiation fatigue. I slept for a couple of hours this afternoon and when I'm done this I'll be having another nap.

My throat is also a tiny bit sore and I can feel that there's some rawness when I swallow. I'm not having real trouble yet but if it gets too much worse I'll need to get that Magic Mouthwash prescription filled.

My sternum is also very tender to the touch and hurts if I put any pressure on or near it - even wearing a seatbelt is a bit uncomfortable. I expect that to get worse before it gets better.

I'll keep you posted on how I'm doing and how much I'm affected by side effects. I don't expect to post every day but I hope to provide an update every other day or so.

Almost done

That's the fourth one done! I'm starting to feel really tired now, my sternum is starting to hurt and is extremely tender to the touch, and my esophagus is also feeling a bit raw. All of these side effects are expected and I think I can expect some to get worse over the coming days. I haven't seen any skin changes, which is good.

Today's treatment went a bit better for me. I did some practicing yesterday and I realized that the only way I could inflate my lungs enough and hold it was to be fully, completely relaxed before breathing in. I tried doing that today and it definitely made a difference: I had one segment where I didn't breathe in properly because I wasn't relaxed but the rest of the segments went as well as they did the first day. I told the nurses about how this worked for me so that they can give this information to other patients.

When I was getting put into position today, I looked at the linear accelerator and noticed that instead of seeing a rectangle of light, I saw a heart-like shape (a real heart with an aorta). On the sides of the opening are a series of rectangular lead things that can move horizontally between the side and the center so that they meet at the center. They can be moved so that the shape of radiation field is just right for each person. Once I realized that, I watched as the machine went over and around me and I saw the lead things moving continuously to change the shape of the field. Is that cool or what?

I saw the radiation oncologist today and she confirmed that the side effects I'm experiencing are normal and expected. She asked if I wanted a prescription for Magic Mouthwash and I said yes. I wasn't sure whether she was giving me a physical prescription or was just leaving it over at the pharmacy, so after waiting for about 10 minutes I was tired and left. I'm going to assume that the prescription is on file at the cancer center pharmacy - the only place where it can be filled, according to the oncologist, probably because it's made (compounded) specifically for the patient and they have the ingredients there.

When I got home I crashed. I'm going to take it very easy tonight and probably go to bed early.

Only two left

Well that's one more done! Although I had some coffee before heading to the appointment I still didn't breathe in quite enough. I found that I could tell when the machine was about to stop and I'd breathe in a little more deeply before they asked me to. They said they noticed me doing that and that they thought I was very smart for figuring this out.

When I got home I did some research on this holding my breath technique and it turns out that it has a name: Deep Inspiration Breath Hold (DIBH). Who knew? There's even been a review study about it saying that it is effective. That's good!

One thing my research discovered is that some treatment centers have ways of giving visual feedback so that the patient is better able to tell when they're doing it right. The best way of doing feedback hasn't been decided. Neither has the best instruction set. But they're getting there - this is a new technique, developed in the last six or seven years, and so of course it won't be perfect. I'm just thrilled that I get to do something new.

Side effect-wise, I'm doing ok. I'm a little tired and sleeping deeply at night, but I was also up before 7am. My sternum is sensitive and hurts occasionally (especially when Gozer steps on it!). I did the manual lymphatic massage exercises yesterday and they're definitely making a difference - my hand is smaller and my sweat and other excretions smell funny. At least the toxins are leaving me :)

Side effect check

We've definitely enjoyed the glorious and spring-like weather on our long Gozer walks this weekend! Gozer has also very much enjoyed all the smells being released from the melting snow and all the mud and dirt and thaw by-products. She has a filthy belly!

Since I am able to go on these walks, it's safe to say that I'm feeling pretty good overall. Yes, I have some pain in my sternum, but it's easily controlled. Yes, I'm a bit tired but I don't think I'm much more tired than normal.

One side effect I hadn't anticipated that has shown up is that my lymphedema is flaring up a bit. It makes sense that this would happen: the lymphatic system transports cells to prevent infection and removes waste and will be heading for the treatment area. Since my lymph fluid doesn't drain very well on the lymphedema side when I'm not undergoing treatment, it's not going to drain well on that side when I am undergoing treatment. I need to do the manual lymphatic massage exercises I was given ages ago to help the fluid circulate.

The other side effect that has surprised me is anxiety attacks. I'll be sitting there when all of a sudden my heart starts pounding and I feel scared and shaky and I want to hide. I have self-care techniques to deal with these (mainly deep breathing, asking myself questions about what I'm feeling, and talking about it) but even so I'm not liking them. Ian pointed out that the cancer is much more top ofind than usual what with the treatment and pain. This makes sense as I'd kind of put the cancer mortality fears to bed, in a way. When nothing is happening it's easy to forget that something could happen, if that makes sense. If it comes to it I have medications I can take for this anxiety but I think I'll be ok.

I haven't experienced any other side effects so let's hope things stay that way :)

And another one down

I had my second radiation treatment this morning at 8:30am. This morning's setup is getting to be kind of old hat to me now. I lie on a sheet on a hard-backed surface with my head in a depression and my hands holding the poles above my head. In the room are several lasers that project lines onto me and it's these, together with the little dot tattoos, that are used to get me lined up. To do that, they ask me to be heavy and they pull the sheet (and occasionally me) however they need to. While they're doing that, I stare either at my reflection in the radiation application machine (which is a linear accelerator) or up at the ceiling. They've got a couple of lighted panels of a garden with tulips and daffodils up there which is nice to look at.

Then when I'm in position, they take a few xrays to make sure I'm in the right place, move the surface around if needed, and give me the treatment. BTW, this video from BBC's Bang Goes the Theory gives a pretty good overview of how this type of treatment works.

It turns out that 8:30am is early for me as I'm not a morning person at all! I hadn't even had any coffee before treatment, which turned out to be a mistake.

I didn't do as well in the breath-holding department today as I did yesterday, even though the nurse said that I did much better than a lot of other people. Although I had no problem holding my breath for the required time, it turns out that I didn't expand my lungs enough and they had to ask me to breathe more deeply three times. I didn't understand what they were asking the first time so we had to stop that segment, and I ended up doing five breath-holding segments instead of yesterday's four. It's very important that I expanded my chest and abdomen the same amount because otherwise important organs like my heart will get in the way.

One reason I had trouble breathing in deeply was that I wasn't fully awake; another reason was that after I let my breath out, I developed a throbbing headache - probably due to caffeine withdrawal. Therefore, even though my next treatment on Tuesday will be at 7:30am, I must be sure to have some coffee before we get started.

Overall, I'm still feeling pretty good. Last night and this afternoon I was quite tired but that's not surprising what with getting up so early both days. This type of fatigue is different from radiation fatigue: radiation and chemotherapy fatigue feels like you've been hit by a truck and can't move, and I'm not there yet.

About an hour ago I did notice that my sternum was starting to hurt. At first I thought that the pain was all in my head but it's got worse so I think it's real. The pain is to be expected, and is a sign that the treatment is working. I also expect the pain to get worse before it gets better which I'm not terribly excited about but I'll manage.

One down, four to go

Well that's one done. Today's radiation appointment was fairly straightforward. When I checked in I received my itinerary which showed that I'd be receiving five treatments altogether over the next five business days (Monday is a holiday). Then I spent 15 minutes talking to one of the nurses about what was coming. I only had one question: can I drive myself to appointments? She said that as long as I was feeling up to it, I could, and that the fatigue probably wouldn't kick in until after the treatments are finished.

Then I got changed and waited. The overall procedure was much the same as during the preparation. The main difference was the machines: instead of being in a CT scanner, I had an x-ray and the actual radiation delivery device.

Once they got me arranged and all lined up they took a couple of x-rays to make sure that I was lined up properly. And then the x-ray retracted and the radiation device lined up on the side.

Then they asked me to hold my breath while the machine rotated about 90deg from my side to about my midsection. We took a break and then I held my breath while the machine rotated to my other side. After that we repeated the process with the machine going the other way. I think if I could have held my breath for over a minute we wouldn't have needed a break but I'm happy with only holding it for 30 or 35 seconds at a time. Apparently I did a really good job of holding my abdomen perfectly still so that's great!

I was nervous driving to the hospital. It's a big change, after all, so it's no surprise that I'd be unsettled. Also, I'd seen my family doctor for my annual physical this morning and was tired out from that. I'd have changed that appointment but my stomach has been hurting again (probably due to long-term NSAID use) and I wanted to talk to him about it. He's sending me to a gastroenterologist.

Once I got there I felt less nervous, and then while the treatment went on I dozed off a bit. Most of my next treatments are early in the morning so I'll pretty much be able to roll out of bed and go. 

This radiation party is about to start

I finally received a call from the radiation department this morning with good news: my first radiation appointment will be Thursday, February 16 at 3:15pm. I'm happy that this is finally happening because I was starting to wonder what was going on. I guess that they'll be using the breath-holding technique that we did during the radiation preparation appointment a couple of weeks ago.

The person who called also said that I'll receive a schedule for the treatments on that day so I am inferring that there will be more than one radiation treatment. I'll need to figure out transportation to and from the hospital; they typically don't want people driving themselves because of the fatigue associated with radiation. I expect I'd be fine to drive the first day as I don't think the fatigue starts right away but we'll see. It's kind of hard to make any arrangements without knowing how many treatments there will be or what time of the day they are. We'll figure it out.

So here we go!