Simulation

I had my radiation simulation today. What they do is put you in a ct-scan machine and adjust your body to the exact position that you will then have to be in for every radiation session. In my case I am on my back, with a wedge under my knees and my arms up over my head. I got 3 tiny dot tattoos (one on my belly a few inches up from my belly button and one on each of my sides. They use these to help position you exactly each time (they machine has red beams that they set and then match with your tattoos). I've got permanent marker X's with circles or triangles around them drawn over the tattoos (I can wash the marker marks off). My experience last time I had radiation is that they do that again the first time and after that they usually just take a ball point pen and make the tattoo dot easier to see each time. They ran the contrast dye and did a scan of the middle of my torso, making many "slices" (much more than for my usual diagnostic scans). Then they took some lovely pictures of my tattoos, my entire body and and ID photo of my face. Just as last time it comforts me to know that they take these ID photos as my biggest fears with radiation is whether they are giving me the proper dose to the right area (a lovely thing to panic about while the machine is whirring around you). With that ID photo in your file at least they know you are the right person!

So they want me back next Monday at 2:45pm for more films and hopefully to also have my first treatment (depends on how the films look). If they need to do more tweaking then my first treatment will be on Tuesday. At that point I will get to pick my time (from what's available of course) to have my daily radiation and will find out how long the treatment will go on. This appt. is during the first Open Studio (my art therapy class) of the coming session. If I'm feeling up for it I may go for an hour before heading downtown for my appt.

When I got home I got a call from Fox Chase with an appt. time for next Monday, which I couldn't take because of the radiation appt. So they will call me back tomorrow with another appt. Just now my gyn onc called to go over where I am and told me that he had already discussed my case with a particular med onc at Fox Chase (who is the med onc that I was going to request). They had both decided that I should have the radiation first as that would take care of the tumor and then we can talk about possible hormonal therapy (this assumes that the rad gets rid of the tumor). The dr. that Fox Chase was giving me an appt. with was an underling of this dr., the new young associate. So I think tomorrow when they call back I will tell them that I want an appt. with the guy that my dr. has already spoken with and will wait for it as there is no rush now. Also it gives me more time to run around and get all the stuff they want me to bring to the appt. (all my original biopsy slides from the very beginning- cd's of the recent ct and PET scans, radiation reports from my previous rad and chemo flow sheets (got those today)). I'm not even sure where to call for some of this stuff but I'll figure it out.

Meanwhile this back pain is really getting old. It moves around (sometimes my back hurts more, sometimes my hip, sometimes my thigh) and varies in degree, but it's always there and it's really tiring me out. I don't know how long it will take for the rad to lessen the pain, I guess it depends on how fast the tumor shrinks, but I'm really glad to get started soon. I've recently started getting muscle pain in the lower belly too, I think the muscles are all compensating for the back pain. I've had belly/pelvic pain opposite back pain when I've had back problems in the past. It's kind of odd how it varies though, some nights I have the worst time sleeping and other nights I'm fine. Some days I spend most of the day feeling pretty good and get worse as the day goes on, other days I'm the opposite- worse in the morning and still other days I'm just hurting all day and night. I take ibuprofen 3 or 4 times a day and sometimes EX Tylenol in the middle of the night, and I know it does something because if I don't take it I really hurt more, but it's not that it gets rid of the pain either (but I may also not be taking enough, I've been trying to get by on as little as possible to save my stomach, I've been taking it pretty much every day for 3 months now). I haven't pursued stronger pain relief because I need to function and also because there is hopefully an end in sight soon. But this pain does scare me a little, that one small tumor can cause this much pain. I don't know how my sister got through each day with bone mets, liver, lung and brain mets, blood clots and heart/lung problems. After 3 months of this day in and day out I have a much better sense of how my mom feels (she's dealt with chronic pain for years). It wears you down. On top of this the last few days I've started a cough, allergy related I think, it's the drip down the back of the throat which makes a tickle and choke kind of cough. I was a little worried how I'd be during the rad simulation today laying on my back, but luckily the phlegm all seemed to settle in the back of my throat and didn't tickle (what a lovely picture that is, sorry!) so I didn't cough. I sure can't be coughing during radiation! I remember last time I had rad I was so afraid I was going to get a cold during it. I think I started with a similar throat thing, but it went away after a few days.

I told a friend tonight that I'd just like to go to sleep and wake up after all of this is over (pain and cancer free of course!). I said this partly because I'm tired, partly because I'm sick of being in pain and partly because I don't feel like running around gathering original pathology slides and ct-scan cd's when I'm tired and in pain. But I don't really mean it of course, in spite of the yucky parts I would never really want to wish away any of the days of my life.