Yesterday was the simulation. I went and had my vitals taken, met briefly with the radiation oncologist and then was lead to the radiation area of the cancer center. You know, they make cool colors for cell phones, for cloth diaper wraps for babies, for paper cups, dog collars, even fruit loops, but never have I seen a cool johnny. I went into the CT scan room and they had me lie on the table and put my head on this pillow of sorts. I positioned my arms over my head and they basically sucked the air out of the pillow so that it formed to my form.  I was told to turn my head to the right to avoid creases on the left side of my neck which they said could add to the skin issues I would inevitably experience. The radiation oncologist came in and drew on my chest using the scar at times as a guide. The other 2 staff put some stickers on me which are designed to show up on the scan. The johnny was draped back over me.Â
They sent me into the tube for the first run. I was asked not to move (but I didn’t have to hold my breath like in the diagnostic scans I had last fall), and they went out for a period of time which seemed long as I was lying there with my arms above my head. Eventually they came back out and checked things out to verify that they’d marked the correct areas. If targets had feelings, this must be what it feels like when someone sights-in a rifle. Or maybe I felt more like the subject in a petrie dish. Or perhaps both. When they were happy with the alignment, they put a small dot of ink where all the lines intersected and pricked me with a pin to create a freckle-like tattoo. I think there are two on my left side and one on my right. These marks and the pillow form will be what they use to line me up each time. One of the staff had two such tatoos put on her hand to show patients. Even though they are really small, I was struck by the dedication she must have to do that for our benefit. This appointment took about an hour total.
As they were marking me up I felt fairly vulnerable. I was expecting to have my left side exposed, but most of me was exposed as they worked to line things up. I chose not to get heated blankets in what was a fairly chilly room because if I had a hot flash I’d have a hard time not moving.  I had to leave my head turned to the right the whole time. I tend to prefer female providers, but I do ok with males. Fortunately there was one of each this day. They were good about draping whenever they could. They were extremely kind and respectful. If someone had come with me, I’m not sure how much of that they would have been permitted to attend.Â
Radiation is something we all are encouraged to avoid whenever possible, and here I was signing a consent allowing exposure to radiation for 33 treatments. That’s 6 ½ weeks. We took the plunge at the start of all this to follow the recommended protocol whenever possible.  I kept reminding myself about those who have been in clinical trials to help come up with the cocktails and the formulas that have informed my treatment. I wouldn’t say I have had second thoughts about our treatment choices. It is what it is, but it’s truthful to say that I don’t like this. Here again is something I have to do all by myself. People can come with me, staff can support me, but everyone exits the room when the beams fly except me. At this point in my treatments, I am feeling the most normal I have felt since September. My life activities are getting back to normal. I’m working most of the time. I’m getting more active. This just doesn’t fit with entering the cancer center and taking that familiar pose under the scan machine.
Now that I’ve written it out and had time to think about it, I am able to think of the questions I could not articulate when the radiation oncologist and I were sitting together in the exam room. I’ve written them down for my next visit.
As I was leaving we identified some preferred times to schedule me for the treatments. First thing in the AM appointments are the most popular so I’ll have to queue up for my turn. I asked for early afternoon appointments until the earlier appointments are available, so that I can just do it on my way home from work. This will give me a definite cut off time each day and will most likely assure that I do as I say and head on home.
The next appointment is in one week and is called a Verification where they put me back in position to do a dry run of sorts. At that time they will take x rays . I will also have the port-a-cath flushed, which is something that is recommended once a month if it is not being accessed regularly, in order to avoid clotting.
I can only imagine how hard it must be to give up the feeling of freedom following completion of the second Chemo and strap your self in for the next phase. Whether it is keeping your eye on the ball, sticking with a commitment made at a more objective time or trusting your providers and the outcome data they have shown you, I think you are doing it the right way. Hang in there, we are all with you, as best we can be, even when you are alone.
Being alone in our alone-ness is hard to take sometimes isn’t it?? I believe that I have a committee of sorts in my head, but they all shut up at the same time when I was all exposed in that cold room. I did not draw upon my usual resources. Your last sentence touched my heart. Thank you. I KNOW this, but must REMEMBER it when I’m feeling particularly oh solo mio. I like what you said above. It really encapsulates the experience so far. I still feel the support. I must say your comment really helped today. I love you R.
You must take C’s point of view and remember that you are NEVER alone. He will tell you that he is never alone, that he always his angels with him in his heart, and you always have your angels with you in your heart, too! So even in your darkest moments, dig deep in your heart and release those angels! They’ll surround with their love and you’ll be amazed at their healing powers!
Love,
Jill