Cancer is stupid; Radiation CT and Waiting, again

cw: cancer, needles, complaining

Radiation planning CT

I had my radiation CT on Friday. They needed to take a CT of me (or several) while I was positioned with my arms above my head so that my radiation oncologist could plan the path of the radiation treatment. They also drew all over my chest, took pictures, and gave me two tiny tattoos on either side of my body so that they can line me up correctly next time.

after my appointment, the marker on my chest balances my port-a-cath scar on the other side

I knew I would have the CT and what it was for. I had been tentatively scheduled to get it the week before, but I wasn't able to lift my arm high enough. Instead, I had an extra occupational therapy (OT) appointment that day. By Friday, after doing my new OT arm exercises for most of two weeks and after 3 OT appointments, I was able to get my arm high enough for the CT. 

my collapsible "shoulder wand" (also known as a stick) for OT stretches 

I was surprised how difficult it was to get my arm to that level even with the extra time and OT. I've been working on getting my arm straight up above my head (not quite there, but close) and I've also been working to push my elbow down/back while my arms are in a butterfly position behind my head. 

They want me to re-ink this Sharpie X so that it stays visible for when I come back for my next appointment. They even gave me my own Sharpie (which I promptly forgot in the  Northstar bathroom)

The position I was in for the CT was a looser position than what I was practicing, more of a cross between an arm butterfly and cactus arms (or the position you put your arms in to yell "touchdown"). Getting there was fine. Basically the technician just asked me to put my arm up and out as high as I could comfortably get. But then he had me stay there for nearly 40 minutes. In all my practicing, my OT said to hold for a count of 3. I think maybe I should have been holding in a less dramatic position for a longer count.

my new tattoo (in the x) plus a freckle for size comparison

After I got myself into position on the CT bed thing, the guy adjusted the pillow thing. The plan is to keep my arms in the same position each time I get radiation, so they have this customizable pillow. It didn't look like much--just a pile of white fabric--but it felt like a thin bag of the little foam beads from a bean bag chair. They were loose when I laid down and after I was in position, he kind of held up the sides and somehow removed the air (that's what he said, otherwise I wouldn't be able to tell) so that the end result was a custom shaped pillow with arm and head indents for me. 

the last time I was in the studio I started press-molding a bulb, but didn't get back to it until it was too dry

I say that I was in position for about 40 minutes, but I didn't have to hold it constantly. I was given two breaks to rest my arm in between setup and again later. When I put my arms back up in position, they slotted into the pillow just right, as did my head, which was turned to the side for the CT. After the initial setup, the guy asked how I was feeling and I was surprised to realize that the discomfort in my left (surgery) arm had eased, but my right arm was going numb. I was a little bit worried about the hand going numb because the numbness during the biopsy was really uncomfortable and caused me to get faint when they took me for a post-biopsy mammogram. On the other hand, the biopsy also included needles, which are notorious for causing me trouble with standing up.

this week I finally felt like I had the energy and ability to recycle some clay, including the forgotten bulb 

I was allowed to adjust my right hand and that fixed the problem. Once the pillow was adjusted to my body, it also added some support to my left arm and the breaks both came at just the right time to allow me to wiggle my numb arm.

I made several new bulbs, including this one with a new sprig mold

After the pillow got set up, my doctor came in. She was in for just a few moments, but managed to draw all over my chest with Sharpie (wouldn't you think they'd have a fancier marker for skin?). Some pictures of her attempts at body art were taken (which made me feel pretty strange--some stranger taking topless photos!) and then they sent me through the CT machine.

pugging new soft clay for building

The CT took a bit longer than it might have, because the guy had to check that my arm wasn't going to knock into the side, then he needed to drape some fabric up over my right elbow because it was dragging on the machine. Once the CT started it was fast. I did one CT or one set of CTs (I don't remember), then we did the breath-hold CT. 

a new port-a-cath bulb

Breath-hold is the technique that will keep my heart (and lungs?) safe. The idea is that I take a deep breath and that pushes my cancer-y breast tissue away from my one and only heart so that the radiation is as far away as possible. I was surprised that there wasn't a more complicated technique. She asked if I'd been practicing (uh, no? was I supposed to?), but I think she was joking. The guy just had me take a deep breath and hold it. He sent me through the CT machine about 4 times with my breath held, but I think the first two were practice because the machine seemed quiet.

a new texture bulb (because I wasn't ready for port-a-cath bulbs yet)

I asked the doctor about the technique I read about in Dr. Susan Love's Breast Book where some women lie on their stomachs for radiation to protect the heart. My doctor said that would make it hard for them to get to all the lymph nodes they need to treat, and she also suggested it's more for women with larger chests than mine.

another new port-a-cath bulb (I have a new sprig, made with my own port-a-cath, in the kiln, ready to fire)

The last thing was to get tattooed. I was apprehensive about this because prolonged arm up position, discomfort, new experiences and needles haven't been a great combination this year. (Witness: biopsy and needle locator before my first surgery). The tattoos are each a single dot. He wiped my skin clean where the Sharpie Xs were, then dabbed on some ink, then poked me with a needle. On the left it hurt more than the right, but everything hurts more on the left lately. They were less painful than a flu shot and a lot less painful than a growth factor shot (which goes in agonizingly slow) or an IV or a lidocaine shot (I've had a lot of these lately) or a needle locator (when the lidocaine didn't work), or a biopsy needle (which, admittedly was more scary than painful, because of the lidocaine, presumably).

the kiln, partly loaded, trying to have new stuff ready for the Labor Day art tour at my house

I told my family I was entering my rebellious phase a bit late, what with the tattoos and the topless photos. But as my husband pointed out, the tattoos are both smaller than nearby freckles and other natural marks on my skin.

a port-a-cath sculpture, partway through glazing the second layer

Waiting, again

The saddest thing, in my opinion, about the meeting is that I was told it would take 5-14 business days for the planning to be completed, which potentially pushes back my timeline yet again. Last time I talked to the doctor, I thought she said 3-7 days for planning, which is hopefully still the case. She needs to make a plan for the angles of the radiation to get the cancer-y targets but miss the heart and lungs as much as possible. Then she needs to run a simulation of the radiation plan to check that her angles work. Of course, she might then need to adjust and rerun the simulation.

the port-a-cath from the above sculpture

Since I had the CT on Friday the 15, it sounds like Friday the 22 is the earliest the plan could be done. The technician wasn't sure if they could immediately start radiation treatment or if they'd need to do a practice with me in place first. If I start on the 25, I'll be done with radiation in the middle of the week before convocation (when faculty come back to work in the fall). If the planning takes the full 14 business days, it looks like I'll be finishing radiation during the first week of classes. 

the wiped glaze from the above sculpture

Big Sigh. I have been playing with a calendar since December, comparing the estimated treatment and recovery times, and I was so sure I'd be done before work started in the fall. There's still a chance, but the fact that it's not guaranteed (and the fact that I'm waiting AGAIN, and waiting just sucks), is just disappointing, depressing, and suck. 

a port-a-cath sculpture earlier in the process

Cancer is stupid

Having cancer, and doing stupid treatments for cancer, for me, has been a roller coaster of times where I feel like: I can do it! I'm doing my best and things are going great! Look at me, I'm strong and I have a good team. How lucky am I? I'm going to be fine. This isn't so bad.

And then I get to the nadir of the ride and I just feel mad and sad and "why do I have to do this?" Why couldn't we have caught this earlier? Why do I have to do more stupid chemo than other people? Why do I have to do another surgery? Why do I have to do 6.5 weeks of chemo when other people do 3 weeks. And some people only have to do 5 treatments. Ugh. I've written myself through the lows a few times on this blog. They don't last, but the waiting time is hard and the unknowing time makes the waiting even more annoying. 

Darter looks sad because I blocked her access to drinking the glaze water

I had convinced myself for months and months that I'd be totally done before the quarter starts and now I'm having a reaction against accepting that might not be true. I've also done that thing I shouldn't do between treatments (but I also have to do): I tried to get myself prepared for what I'd need to know and do during radiation. I know I need to exercise and use lots of lotion. I know bras might too uncomfortable to wear. But in gathering this information, I also seem to have gathered the information that the pain increases as the treatment goes on, 6.5 weeks is a lot, and the pain is actually worse after the treatment ends. Some people don't have too much pain with the treatment, but its possible that pale people (me), are in more pain. 

Sean (who is right), says that I shouldn't worry about it now, and that the doctors can help with the pain later if I need them to, but right now, with nothing else I'm allowed to do to make this any better right now, I just want to hit stuff and complain. Luckilly, I start PT next week and I've been told with PT starting I can ease back into (mood modulating) exercise. I CAN'T WAIT!