I went in to have Penelope flushed today. That sounds bad, but all that happens is the nurse sticks her with the access tube, puts in saline solution, makes sure she both lets things go in and things come out, and then takes out the access tube. It seems strange that it has been six weeks already since last time Penelope was used. I must still be in penelope mode, however, because I didn't jump or yelp when I was poked. Sophistication wears strange clothing sometimes -- ha ha ha, chemotherapy sophistication.
My throat has started feeling strange, as though there is a giant lump around which I have to swallow and breathe. It doesn't hurt, precisely, but drinking is hard, and I am aware of it all the time. It began a couple of days ago, so I will have to remember to tell Dr. Clark next week, just in case it is some bizarre side effect no one told me about. He did emphasize the fact that I should be paying attention to my body. I'm listening, body!
On the way home, I passed through an intersection and noticed a car waiting to turn left. As I passed, I realized that the female driver had tears streaming down her face as she sat there. It gave me a jolt, and I wondered what could have happened. Even with everything I've been through, it is hard to remember that behind the public faces people show are inner realms of happiness or sorrow or distress or joy that often aren't apparent to those watching. How good it is that God looks on our hearts.
Thursday, February 26, 2009
Wednesday, February 25, 2009
Crystal is here to visit, and she came to pick me up this morning so we could talk all the way to the doctor's, in the waiting room, and again in the exam room while we waited for Dr. Clark to come in. She brought me a hat -- her favorite black bowler-type hat, and when I objected, she objected right back. I must still need to learn to be a gracious accepter.
Afterward, we went to Mom's and woke Paul up to come visit with us too. Isn't it amazing that you can have friends that you don't see for years and years but with whom there is no time gap when you do see them again? That's how it feels with Crystal. Maybe that's why heaven is heaven: time enough for everything.
Afterward, we went to Mom's and woke Paul up to come visit with us too. Isn't it amazing that you can have friends that you don't see for years and years but with whom there is no time gap when you do see them again? That's how it feels with Crystal. Maybe that's why heaven is heaven: time enough for everything.
Friday, February 20, 2009
By now, the routine is familiar. Lie down, rubber-band feet, arms holding the post, couch raises and moves backward, big round arms comes overhead, they write on me with Sharpie marker. Then I stare at the glow-in-the-dark stars on the ceiling, and listen to whatever music they've chosen. Today it was Enya and I thought, as I always do, how annoying it is to not be able to understand the words. I mentioned as much, and then a discussion ensued concerning whether Enya was the lead artist's real name, or whether it referred to the whole group.
Such scintillating and intelligent topics we choose! Better than saying nothing, though. I have also noticed that the light switches for the room are linked somehow to the little remote controller that the techs use to move my couch and the machine arms, because when Brooke touches it by mistake and the ceiling lights flash on and off, she always says, "Little light show!" It makes me feel like I'm in my own ________________ (the word escapes me; like a theater, but they show astronomy things on the ceiling and you always fall asleep).
I finally remembered to take the Olivia book to show them, and Dr. Clark and Gary were properly impressed by Olivia's marker tattoos. Brooke apologized for not being such an artist.
And afterward, Michele took me to lunch in Springville! It is sooooo nice to be able to taste things again!
Such scintillating and intelligent topics we choose! Better than saying nothing, though. I have also noticed that the light switches for the room are linked somehow to the little remote controller that the techs use to move my couch and the machine arms, because when Brooke touches it by mistake and the ceiling lights flash on and off, she always says, "Little light show!" It makes me feel like I'm in my own ________________ (the word escapes me; like a theater, but they show astronomy things on the ceiling and you always fall asleep).
I finally remembered to take the Olivia book to show them, and Dr. Clark and Gary were properly impressed by Olivia's marker tattoos. Brooke apologized for not being such an artist.
And afterward, Michele took me to lunch in Springville! It is sooooo nice to be able to taste things again!
Wednesday, February 18, 2009
Today when I was on the table and they had lined me up and drawn on me with Sharpie and we had joked about something, they left to go push buttons, and I started coughing. I tried to cough quietly without moving, but that is almost impossible. So Brooke and Marcie had to come back, and Marcie said that the only cough drop she had was nasty-tasting, but she brought it anyway. It wasn't so bad, and I was able to stop coughing.
Lining me up again didn't take very long, and Brooke said that once they had a patient who insisted that her toes began itching as soon as they left the room. I think I will bring a throat drop every day, and put it in my mouth while I'm gowning. Less work that way.
I do not feel like doing very much, but getting out of the house in time to drop Reuben where he is going and get in the radiation doors by 10 has become the Big Goal. If I want to shower and be able to use lotion, I have to do it before 8 a.m. I'm not to use deodorant at all. So far my skin hasn't really changed. Today was session # 7.
Last night Reuben said to me, "I wish your hair was like before, and you didn't wear hats." I have to agree about the hair part, but I like wearing hats. A little fuzz is starting to grow, and James, Nicole, and Paul were here one day and they said I should wear one of those elastic headbands with a giant flower or bow, like little girl-babies do, or stick a bow on my head with Karo syrup. Someone else I know but can't recall precisely whom, at this juncture, calls them "head tourniquets."
Lining me up again didn't take very long, and Brooke said that once they had a patient who insisted that her toes began itching as soon as they left the room. I think I will bring a throat drop every day, and put it in my mouth while I'm gowning. Less work that way.
I do not feel like doing very much, but getting out of the house in time to drop Reuben where he is going and get in the radiation doors by 10 has become the Big Goal. If I want to shower and be able to use lotion, I have to do it before 8 a.m. I'm not to use deodorant at all. So far my skin hasn't really changed. Today was session # 7.
Last night Reuben said to me, "I wish your hair was like before, and you didn't wear hats." I have to agree about the hair part, but I like wearing hats. A little fuzz is starting to grow, and James, Nicole, and Paul were here one day and they said I should wear one of those elastic headbands with a giant flower or bow, like little girl-babies do, or stick a bow on my head with Karo syrup. Someone else I know but can't recall precisely whom, at this juncture, calls them "head tourniquets."
Monday, February 16, 2009
Well, from now on I will be having radiation treatments at 10 a.m. That means that I have to leave the house at 9:45 so I have time to park and walk in. I don't have to wait, I just go straight back. The only effects I've noticed so far are 1) I have Sharpie marker on me all the time, and 2) my left arm and side are continually sore. This is because of the position in which I have to hold my arms, which is not comfortable at all, and really pulls on my left shoulder area and side.
I find myself taking a book along to read, even though I haven't actually had time to read at all because they are so streamlined and efficient. I've also discovered that I could actually wear the same shirt every day since I take it off before getting in there, but that I evaluate my socks to see when I last changed them. Who wants to put rubber bands on stinky sock feet?
I find myself taking a book along to read, even though I haven't actually had time to read at all because they are so streamlined and efficient. I've also discovered that I could actually wear the same shirt every day since I take it off before getting in there, but that I evaluate my socks to see when I last changed them. Who wants to put rubber bands on stinky sock feet?
Wednesday, February 11, 2009
Brooke is the full-time radiation tech; her helpers so far are Marcie and Katie. On Tuesday, I had radiation and x-rays, which took a whole hour. Then today, I had radiation and x-rays again because something happened to Tuesday's. I'm in a different room this time. The drill goes something like this:
Come in, say hi to the receptionist, walk to the dressing room, knock to make sure someone hasn't forgotten to lock the door while they change, enter and lock door, strip and stow belongings, put on exciting radiation wear, exit dressing room, go to tiny waiting room, get warm blanket out of the blanket oven (I'm sure it's not really called that), sit down, wait for someone to come get me. I usually don't have time to read anything, but since sometimes I do, I tend to bring a book all the time just in case. Joke with Brooke and helper-of-the-day, check computer for my name, lay on hard slab, put arms up, and hold still/hold still/hold still and don't think about your left arm being very uncomfortably stretched over your head.
Brooke and helper raise the couch to about shoulder level, a fact I discovered today when we were done and I sat up to get off and I was quite high up off the floor! I'm sure it makes their work easier when they don't have to lean over to do it. They first line up all my tattoos with the lasers coming from the round machine arm and the two side walls. "That's me," when uttered by helper-of-the-day, means that the tattoo on her side is lined up with the laser. Brooke moves the couch forward and back a couple of times to check, sometimes pulls my arm up a little higher, and when I'm all squared away (ha ha ha), they start reading out numbers. "5 medial" means they shift me a bit to the right. "Depth of 3" means they raise the couch a bit. The middle of the round arm of the machine has little pistons that can move to make shaped fields for the radiation. My first field looks like a pattern piece for the bodice of a dress -- armhole curve on the left, neckline curve on the right, straight sides and bottom.
At this point, Brooke and helper get out the Sharpie markers and I discover that they draw on me every day! Some of the marks make the tattoos more noticeable, and then they trace the lines the round arm shines on me, with little dashes. When everything is to their liking, Brooke and helper-of-the-day leave, close the radiation barrier doors, and I hear the buzzing sound that means invisible rays are bombarding me. I can't feel them, though. John Denver is singing about country roads taking him home.
30 second later, Brooke and Marcie are back. They check to make sure I'm still lined up, and then they shift me to a different position. The round machine arm rotates about 30 degrees to my right, and Brooke shifts the couch to the right also, and angles my feet left, so they are pointing more at 11 o'clock instead of 12 noon. My right elbow almost touches the round machine arm. The pistons have whirred back and forth into a long rectangle, and Brooke attaches a horseshoe-shaped metal thing onto the machine arm. Marcie slides a clear plastic plate onto the horseshoe, and it has a black foam rectangle protruding from slots about 4 inches. Brooke wiggles it back and forth until the angle satisfies her. She checks it by touching my left side with her fingers. I peeked today, and she's really checking to see where the laser touches my skin so she knows exactly where the rays will hit. Marcie used a ruler to do the same thing yesterday. They leave again, and the buzzing starts.
When they come back this time, Marcie uses her Sharpie to draw a line along the bottom of the black foam rectangle in the clear plastic plate. She then removes it, and the machine arm rotates to the left until it is so far down that I can't see it in my peripheral vision. I hear some clicking and snapping and guess that Brooke has put the plate back in the horseshoe holder. They check a couple more things and then leave again to start the machine buzzing rays at my left side.
Since I am having x-rays also, the machine arm rotates back to the top, but this time they insert a plastic plate with metal pegs along an x and y axis into the horseshoe holder. We go through the whole routine again. My arm is killing me.
When Brooke says I can put my arms down, I have to use my right arm to help lower the left one. Brooke says I'll see the doctor on Friday this time, but normally I'll see him on Wednesdays. She also says I'll have x-rays every Tuesday. I think I'll let them help me remember all of this.
When I'm re-dressed and on my way out, I see that someone has brought doughnuts and juice. I take some apple juice. So much for the second day of radiation.
Come in, say hi to the receptionist, walk to the dressing room, knock to make sure someone hasn't forgotten to lock the door while they change, enter and lock door, strip and stow belongings, put on exciting radiation wear, exit dressing room, go to tiny waiting room, get warm blanket out of the blanket oven (I'm sure it's not really called that), sit down, wait for someone to come get me. I usually don't have time to read anything, but since sometimes I do, I tend to bring a book all the time just in case. Joke with Brooke and helper-of-the-day, check computer for my name, lay on hard slab, put arms up, and hold still/hold still/hold still and don't think about your left arm being very uncomfortably stretched over your head.
Brooke and helper raise the couch to about shoulder level, a fact I discovered today when we were done and I sat up to get off and I was quite high up off the floor! I'm sure it makes their work easier when they don't have to lean over to do it. They first line up all my tattoos with the lasers coming from the round machine arm and the two side walls. "That's me," when uttered by helper-of-the-day, means that the tattoo on her side is lined up with the laser. Brooke moves the couch forward and back a couple of times to check, sometimes pulls my arm up a little higher, and when I'm all squared away (ha ha ha), they start reading out numbers. "5 medial" means they shift me a bit to the right. "Depth of 3" means they raise the couch a bit. The middle of the round arm of the machine has little pistons that can move to make shaped fields for the radiation. My first field looks like a pattern piece for the bodice of a dress -- armhole curve on the left, neckline curve on the right, straight sides and bottom.
At this point, Brooke and helper get out the Sharpie markers and I discover that they draw on me every day! Some of the marks make the tattoos more noticeable, and then they trace the lines the round arm shines on me, with little dashes. When everything is to their liking, Brooke and helper-of-the-day leave, close the radiation barrier doors, and I hear the buzzing sound that means invisible rays are bombarding me. I can't feel them, though. John Denver is singing about country roads taking him home.
30 second later, Brooke and Marcie are back. They check to make sure I'm still lined up, and then they shift me to a different position. The round machine arm rotates about 30 degrees to my right, and Brooke shifts the couch to the right also, and angles my feet left, so they are pointing more at 11 o'clock instead of 12 noon. My right elbow almost touches the round machine arm. The pistons have whirred back and forth into a long rectangle, and Brooke attaches a horseshoe-shaped metal thing onto the machine arm. Marcie slides a clear plastic plate onto the horseshoe, and it has a black foam rectangle protruding from slots about 4 inches. Brooke wiggles it back and forth until the angle satisfies her. She checks it by touching my left side with her fingers. I peeked today, and she's really checking to see where the laser touches my skin so she knows exactly where the rays will hit. Marcie used a ruler to do the same thing yesterday. They leave again, and the buzzing starts.
When they come back this time, Marcie uses her Sharpie to draw a line along the bottom of the black foam rectangle in the clear plastic plate. She then removes it, and the machine arm rotates to the left until it is so far down that I can't see it in my peripheral vision. I hear some clicking and snapping and guess that Brooke has put the plate back in the horseshoe holder. They check a couple more things and then leave again to start the machine buzzing rays at my left side.
Since I am having x-rays also, the machine arm rotates back to the top, but this time they insert a plastic plate with metal pegs along an x and y axis into the horseshoe holder. We go through the whole routine again. My arm is killing me.
When Brooke says I can put my arms down, I have to use my right arm to help lower the left one. Brooke says I'll see the doctor on Friday this time, but normally I'll see him on Wednesdays. She also says I'll have x-rays every Tuesday. I think I'll let them help me remember all of this.
When I'm re-dressed and on my way out, I see that someone has brought doughnuts and juice. I take some apple juice. So much for the second day of radiation.
Friday, February 6, 2009
Wednesday, February 4, 2009
At least I didn't get eaten by the Dragon.
When I go to Radiation Therapy, I walk in (no waiting!) and go to Patient's Dressing Room #1 (just because I am #1) and put my things in Locker #1 (same reason). I get to strip from the waist up and wear a lovely blue hospital gown that won't shut and slip the key-bracelet thingy on my wrist and go to the small waiting room just past the sign "Abandon Hope All Ye Who Enter Here".
Just kidding. The sign really says something about nobody back here but us patients and techies.
Today, Gary takes me into the "simulation" room. This means they are taking lots of x-rays of me to decide where to aim the radiation rays so they miss vital things like hearts and lungs. He has me sit on the "couch", which is actually not a couch, but the hardest slab of metal I've ever touched. That's when I notice the Dragon. It's in the corner to my left, and I have to look again before I realize that the knobs and buttons and sliders and cords just make it look like a dragon. The main cylinder is the head and snout, with two handles for ears and another handle just for fun, I guess. Under the main cylinder is a sliding box that looks like the dragon's beard, and on the end of the cylinder are some buttons in the perfect places to be nostrils and teeth. The stand it's on become its feet and body, and the three intertwining electrical cords snaking out of the main cylinder are a very convincing tail.
Gary talks all the time, telling me what he's going to do and then doing it. He has me lie on the couch (ha!) and rubber-bands my feet together (so I won't wiggle them). Under my head is a plastic form that reminds me of those weird Egyptian neck-rest things at museums, except mine has two posts sticking up and a wing on each side. When Gary has me raise my arms up and hold onto the posts, I discover that the wings are to rest my arms on. This becomes very important later on, when I've had my arms in the same position for an hour.
The angle isn't right with one hand on each post, so we try having both hands hold the right post, and that seems to work. The only problem is that after about three minutes my left arm begins to object. It continues to object, gradually getting louder and louder. The machine they use (not the Dragon) has about four arms, one of which is a two-foot-wide circle with a glass panel in the middle. As I later find out, this can emit light, including a ruler made of light, onto my chest as well as x-rays, laser beams, and radiation rays. It can rotate around me from front to back as I lay there. One of the other arms is square, and apparently has to be exactly opposite the round arm when taking x-rays. The couch also raises up and can swivel. There are laser beams shining from the ceiling above me, and from each side wall.
I have to take my left arm out of the gown so Gary can write on my chest and side with Sharpie marker! I am forcibly reminded of Olivia the Tattooed Lady*. Gary has never heard of this story, nor has Dr. Clark. I decide I should enlighten them. Gary also tapes BBs on my chest at certain intervals, apparently so he can have reference points to his Sharpie lines and dots on the x-rays he is taking. Gary makes circles and letters and numbers and dotted lines and solid lines and takes about 12 x-rays. If someone gave me a quarter for every time he says, "Remember to keep still," or "You're doing great! Keep lying still, now" I'd have probably $10. Finally Gary says Dr. Clark likes the treatment plan they've been making, and he gets ink and a little pin and proceeds to drip ink on my chest in six dots, and puts one dot on each side. Then he pricks my skin in the middle of each dot, and voila! I have eight dot tattoos.
I tie up my gown, because Gary says we have to go have a CT scan, which means we walk through the hospital corridors to the CT room. The couch there has nice cushions on it, but Gary pulls out a wooden plank from behind the machine and fastens it onto the cushions. He has brought along the neck-rest thing, so now I lie down on the wooden plank and rearrange myself like I was in the other room, and Gary checks all my Sharpie and Tattoo lines with the laser beams in this room, and then we start the CT scan. The CT scanner is like a big O, into the middle of which my plank and I go. We go in and out several times while Gary checks incomprehensible things, and then finally Gary explains that this is a slow scan and so I have to just lie still and be patient while the O whirs and flashes around me, and the couch/plank slowly eases into the O and back out again. I am freezing.
By this time my arms are pretty numb, and I am reminded of all those karate classes in high school when we took up the Iron Horse (am I remembering the name right?) stance and just stood there until our legs about fell off. I play mind tricks on myself and listen to the whirring and don't bother to try to follow the lights as they whiz around the O. Finally the machine quiets down and I can rest my arms.
We walk back to the radiation therapy rooms and Gary says I'm done, so I go back to the dressing room and look at my Sharpie designs and tattoos in the mirror. Olivia's are infinitely more intriguing. I am a dot-to-dot.
*Olivia Saves the Circus by Ian Falconer. Atheneum Books, 2001.
When I go to Radiation Therapy, I walk in (no waiting!) and go to Patient's Dressing Room #1 (just because I am #1) and put my things in Locker #1 (same reason). I get to strip from the waist up and wear a lovely blue hospital gown that won't shut and slip the key-bracelet thingy on my wrist and go to the small waiting room just past the sign "Abandon Hope All Ye Who Enter Here".
Just kidding. The sign really says something about nobody back here but us patients and techies.
Today, Gary takes me into the "simulation" room. This means they are taking lots of x-rays of me to decide where to aim the radiation rays so they miss vital things like hearts and lungs. He has me sit on the "couch", which is actually not a couch, but the hardest slab of metal I've ever touched. That's when I notice the Dragon. It's in the corner to my left, and I have to look again before I realize that the knobs and buttons and sliders and cords just make it look like a dragon. The main cylinder is the head and snout, with two handles for ears and another handle just for fun, I guess. Under the main cylinder is a sliding box that looks like the dragon's beard, and on the end of the cylinder are some buttons in the perfect places to be nostrils and teeth. The stand it's on become its feet and body, and the three intertwining electrical cords snaking out of the main cylinder are a very convincing tail.
Gary talks all the time, telling me what he's going to do and then doing it. He has me lie on the couch (ha!) and rubber-bands my feet together (so I won't wiggle them). Under my head is a plastic form that reminds me of those weird Egyptian neck-rest things at museums, except mine has two posts sticking up and a wing on each side. When Gary has me raise my arms up and hold onto the posts, I discover that the wings are to rest my arms on. This becomes very important later on, when I've had my arms in the same position for an hour.
The angle isn't right with one hand on each post, so we try having both hands hold the right post, and that seems to work. The only problem is that after about three minutes my left arm begins to object. It continues to object, gradually getting louder and louder. The machine they use (not the Dragon) has about four arms, one of which is a two-foot-wide circle with a glass panel in the middle. As I later find out, this can emit light, including a ruler made of light, onto my chest as well as x-rays, laser beams, and radiation rays. It can rotate around me from front to back as I lay there. One of the other arms is square, and apparently has to be exactly opposite the round arm when taking x-rays. The couch also raises up and can swivel. There are laser beams shining from the ceiling above me, and from each side wall.
I have to take my left arm out of the gown so Gary can write on my chest and side with Sharpie marker! I am forcibly reminded of Olivia the Tattooed Lady*. Gary has never heard of this story, nor has Dr. Clark. I decide I should enlighten them. Gary also tapes BBs on my chest at certain intervals, apparently so he can have reference points to his Sharpie lines and dots on the x-rays he is taking. Gary makes circles and letters and numbers and dotted lines and solid lines and takes about 12 x-rays. If someone gave me a quarter for every time he says, "Remember to keep still," or "You're doing great! Keep lying still, now" I'd have probably $10. Finally Gary says Dr. Clark likes the treatment plan they've been making, and he gets ink and a little pin and proceeds to drip ink on my chest in six dots, and puts one dot on each side. Then he pricks my skin in the middle of each dot, and voila! I have eight dot tattoos.
I tie up my gown, because Gary says we have to go have a CT scan, which means we walk through the hospital corridors to the CT room. The couch there has nice cushions on it, but Gary pulls out a wooden plank from behind the machine and fastens it onto the cushions. He has brought along the neck-rest thing, so now I lie down on the wooden plank and rearrange myself like I was in the other room, and Gary checks all my Sharpie and Tattoo lines with the laser beams in this room, and then we start the CT scan. The CT scanner is like a big O, into the middle of which my plank and I go. We go in and out several times while Gary checks incomprehensible things, and then finally Gary explains that this is a slow scan and so I have to just lie still and be patient while the O whirs and flashes around me, and the couch/plank slowly eases into the O and back out again. I am freezing.
By this time my arms are pretty numb, and I am reminded of all those karate classes in high school when we took up the Iron Horse (am I remembering the name right?) stance and just stood there until our legs about fell off. I play mind tricks on myself and listen to the whirring and don't bother to try to follow the lights as they whiz around the O. Finally the machine quiets down and I can rest my arms.
We walk back to the radiation therapy rooms and Gary says I'm done, so I go back to the dressing room and look at my Sharpie designs and tattoos in the mirror. Olivia's are infinitely more intriguing. I am a dot-to-dot.
*Olivia Saves the Circus by Ian Falconer. Atheneum Books, 2001.
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