Radiation therapy preparation redux

Today's radiation therapy preparation went well, I think. You might remember that the oncologist hadn't been able to figure out a way to give me the treatments without affecting my heart and she wanted to try a different position for the radiation. Because the position is different, they need to repeat the CT scan and i went in at 7:45am this morning to do that.

While the basic procedure was the same as before - get me into the right position and lying still and then taking CT scans - the details differed. This time, they didn't use the bean bag mold thingy to hold me in position. Instead, I had to put my arms over my head, with my hand resting against poles situated above my head. I wasn't supposed to grip the poles because they wanted my arms relaxed (especially since I was in that position for a half-hour or so) so I ended up kind of resting the webbing between my thumb and forefinger against the poles with my thumbs straight and my fingers loosely curled around the poles. 

I have a hard time raising my left arm (the side where my primary cancer was) over my head both because they took out lymph nodes in my armpit, leaving scar tissue and reducing mobility, and because I have lymphedema on that side, reducing mobility further. Therefore, the position wasn't what I'd call comfortable but it also wasn't unbearable. 

Once they got me into the basic position they started finding all the alignment tattoos and pushing and pulling me into the exact position. Because I have the original alignment tattoos and they added new tattoos during the last preparation, they had to figure out which to use. The nurses ended up circling the ones to use and crossing out the other ones, and then taking photos of my tattoos for my chart.

After I was fully aligned in position, they put a small weight on my diaphragm so that they could see where my diaphragm was on the scan. Then we got started.

I spent the rest of the time lying in the CT scanner. The scanner itself is donut-shaped; the thing that scans goes around and around and around in the donut while the patient lies on a table in the middle of the donut. During an actual scan the scanner picks up speed but during all the waiting, it kept a slower pace and to me that pace sounded like whoosh-whoosh-whoosh-whoosh-whoosh. I found this noise oddly calming, almost like water or fluid whooshing back and forth around me. Between that soothing noise and the fact that it was 8am, I dozed off a bit.

They did two CT scans, one with me just breathing normally and one with me holding my breath. They also had me practice holding my breath so that I was comfortable doing it in that position. I'd been practicing holding my breath since I got the call from the radiation oncologist but I hadn't been practicing with my arms above my head and a small weight on my diaphragm - and those do make holding my breath feel different.

When the nurse came to get me and we talked about what we were going to do, I told her that I'd been practicing holding my breath but feeling nervous about whether I was doing it right. She said to be sure to fill my lungs, not my belly, and to keep my back flat on the table. I kept these points in mind when I was holding my breath.

Basically, what I did was take a breath in, blow it alllllll out, and then breathe in slowly and completely, trying to fill my lungs from the bottom up. When I'd been practicing, I kept a count to see how long I was holding my breath so I did that during the radiation prep too. I didn't have to hold my breath for nearly as long as I can so I was pleased about that.

The nurses said that I'd done a good job holding my breath because I didn't move and because I'd got my diaphragm up really high. Hopefully this approach will work. They did say that there were still more approaches the radiation oncologist can take, so I'm not out of options here. That's a load off of my mind. 

So now I just wait for someone to call me to either set up my first radiation appointment or to tell me that this approach won't work either and I need to go back for a third prep session.

Not quite the update I'd hoped to give

My radiation oncologist called today to tell me that she's been working on my treatment plan and is having trouble ensuring that the radiation beams don't hit my heart. Apparently my spot is quite close to my heart, which makes giving it radiation quite tricky. I don't want to have a damaged heart and if the radiation beams don't clear the heart, I'm looking at it being damaged.

She's not giving up yet, though! She asked if I can hold my breath for 30 seconds and I said yes (I checked afterwards and I can hold my breath for at least 40 seconds). She said she'd like to redo the CT prep with me holding my breath because apparently inflating the lungs pushes the heart out of the way. It's possible that this position and technique will give her the clearance she needs to give me these treatments. Of course I said yes I'd be willing to redo the scan and prep!

She also asked me to practice holding my breath as the longer I can hold my breath, the shorter each treatment will be. If I can only hold my breath for 10 seconds then they can only apply less than 10 seconds of radiation, after which they have to wait until I'm ready again. Of course if it had to go that slowly it would be ok but it's better if they have to stop less frequently.

A couple of hours later the nurse called with my new CT scan and prep appointment. It's scheduled for Tuesday, January 31 at 7:45am (eeep that's early!). Hopefully this approach will work.

Radiation therapy preparation

I think today's CT scan and marking, or radiation preparation, went well. I don't remember exactly what happened during my previous radiation prep treatments so I can't really say whether or not this one went better or worse than those ones.

When I got to the cancer center I hadn't realized that I didn't have to check in at the main desk so I wasted a little bit of time waiting in line there. Fortunately I wasn't late and my nurse was so it all worked out just fine.

The nurse started off by explaining what would happen: that they were positioning me to receive the radiation treatments with the help of a CT scanner and that I would have to lie very still. To help me lie still, they would be setting up a mold around me and they would be adding compression to my abdomen so that I didn't move much when I breathed. At this point we don't know how many treatments I will be receiving as the oncologist wanted to see the CT scan to see what was going on around my sternum. It will take an unknown amount of time to make all the calculations. I'll receive a call for the first appointment sometime and when I come to that appointment I'll get the the treatment schedule.

It sounds kind of loosey-goosey, doesn't it? Normally when people go in for radiation, they're told how many treatments they'll get. Then again, most people are receiving a standard radiation therapy treatment for their cancer, and in those cases everything is pretty much known. My treatment is customized for me and must take into account the amount of radiation I've received to that area already along with the arrangement of my organs and bones. Customizing something always takes longer than giving the standard thing.

After she talked to me she took a photo of my face for my file (apparently I've changed a little in the last decade), a second nurse came in, and we got started.

I laid on a narrow, hard CT scanning bed with laser lines projecting down onto me. One of them kept going into my eye so I ended up just keeping my eyes closed throughout. Some of my alignment marking tattoos from the first radiation treatments are still there and they used those to align me. It's an odd sensation, lying there still and heavy while they pushed and pulled me into position. Once I was fixed in place, they pushed what would become my individual mold close to me so that I couldn't move. Apparently this mold is like a giant beanbag with little styrofoam balls in it; to make the mold, they suck all the air out and presto-magico, instant mold! When I'm done with it they force air into it and it relaxes again, ready to be used again.

Once I was fixed into position, the oncologist came in and added the abdominal compression. She kept tightening it until my breathing was balanced between comfortable and uncomfortable. It's difficult to describe the feeling of trying to breathe when my abdomen was prevented from expanding. I could only take shallow breaths - taking deep breaths was really hard what with the big weight thingy on my abdomen - which led me to feel like I wasn't getting enough oxygen. Then I would start to feel like I couldn't breathe and that I was starting to suffocate and I'd have to remind myself that I was getting enough oxygen and to relax. Keeping my eyes closed helped me stay calm, I think. So did all that meditation training - for a while I was doing that "breathe in through one nostril and out through the other" thing.

After all that, the CT scan started. This was just like other CT scans except that I didn't have to hold my breath and I didn't have to have any contrast injected into me. When the CT scan was done, the nurses came back, removed the abdominal compression, and made little x's where they wanted to place alignment tattoos. They gave me the little dot tattoos and let me go. The whole thing took about an hour.

I'm a little nervous about the treatment, I think. I was very chatty this morning (I get chatty when I'm nervous) and the nurse made it kind of clear that she just wanted me to be quiet and let them do their jobs. Closing my eyes helped me do that, too. I'm also having episodes where I'm feeling a bit depressed. I think I'm feeling this way because things are changing for me and I'm entering a new metastatic chapter. Add to that all the unknowns associated with this change and it's not surprising that I'm feeling a bit nervous and down. I'm not feeling so sad that it's a problem; it's just something I need to be aware of and I need to make sure I take care of myself.

After all this, the actual radiation sessions should be pretty quick and straightforward.

Getting started

The cancer center called today asking if I could come in tomorrow morning at 8:15am for the CT scan and to get the markings. Of course I can! Let's get this stereotactic radiation therapy party started!

I've been waiting for this call - I had kind of expected that I'd hear from them before now but I guess my treatment isn't exactly urgent, given that my cancer has been stable for so long.

The appointment is supposed to take about an hour and fifteen minutes. I don't know when the actual treatments will start but I expect it'll be a matter of days rather than weeks.