Friday went swell. The routine is getting settled in and we are developing a ritual. I'm not nauseous thanks to my return to the Anzemet every morning and my appetite is normal. Puking ain't fun. Yup. All systems are go. But I've got to stop running on empty. I feel so good all the time I'm not resting like I swore I would. Then I run out of steam at times when I'd rather be doing something. Gotta get a handle on that.
Friday night proved it.
My therapy can cause bowel concerns and when I saw what looked like a bowl full of blood I had a panic attack. We called Hopkins, went to the hospital and all is well. It's just a pain is the ass (snort) and will be dealt with swiftly. Reality has reared it's ugly head though. I'm scared. The side effects of this are serious and I am paying a lot more attention to the guidelines now - before they become a necessity.
Prevention is the key, eh?
Sunday, November 11, 2007
Thursday, November 8, 2007
Day 4 - A Basket of Goodies
Well now. It seems that Dorothy here has a new cast member. Remember her basket. In it she kept all the things she needed for her journey. A picture of Auntie Em to show Professor Marvel. A hankie to dry the lion's tears. The Tinman's oil can in case they needed it later (and they always did). So now I have a basket. And in mine is my newest best friend ~
Anzemet.
Remember all that high-falootin' talk about not having any nausea? I've been taking a preventative strike against nausea with that drug until today. Today I didn't take it to see if I was going to be able to go with one less drug in my system as desired by me (and directed by my team) - and barfed in the bank. It's been a queasy day of nibbling and napping and medicine, but I think tomorrow will be back on track. I seem better if I'm nibbling. No wonder there are baskets of crackers, hard candy and mints all over the treatments areas at The John.
I'm sure I'll need more in my magic basket before this is over.
Until then, I just pray the nice people who invented Anzemet got all the lemon meringue pie they deserved.
Anzemet.
Remember all that high-falootin' talk about not having any nausea? I've been taking a preventative strike against nausea with that drug until today. Today I didn't take it to see if I was going to be able to go with one less drug in my system as desired by me (and directed by my team) - and barfed in the bank. It's been a queasy day of nibbling and napping and medicine, but I think tomorrow will be back on track. I seem better if I'm nibbling. No wonder there are baskets of crackers, hard candy and mints all over the treatments areas at The John.
I'm sure I'll need more in my magic basket before this is over.
Until then, I just pray the nice people who invented Anzemet got all the lemon meringue pie they deserved.
Wednesday, November 7, 2007
Day 3 - Munchkins
On Monday and Tuesday I will always have appointments after treatment, but the rest of the week it should be smooth sailing unless something pops up when I check in in the morning. I don't even have to leave the level we park on. Today I was in-and-out in 30 minutes. Schweeeeet!
Johns Hopkins has a very efficient system for us. I have an orange "Hopkinscard" that I scan as soon as I get in the door of the Sidney Kimmel Building where everything takes place. The machine spits out a sheet of paper telling me each appointment I have for the day, where they are located, phone numbers at those departments, and a place at the bottom for my vital signs for the day in case I need them taken. I can then proceed to do my thing without worrying that I've forgotten to check in with so-and-so or they can slip in surprises like extra lab work if necessary. They won't call me at home, afraid I'll miss a message telling me to come in early or stay late for something important.
Hopefully the system works.
When my sheet said to see Mr.R in Registration on Tuesday - I put on my happy face even though I thought I wouldn't have to go up there that day. Some days computers are cranky, and Mr. R is one of the Munchkins (yup!) who has to kick his machine sometimes. That was the sad truth on Monday and Tuesday. He had a room full of people and a scanning machine that was just not happy. Between setting up folks for their visits and hauling his butt out of the room to reset the kiosk - Mr. R was lookin' low by the time he got to me. But he knows I'm patient and his smile is genuine for me. "You need liquids, get some water", I say. "I got tea" says he, and soon after he's slurping away and the raspiness I heard with the previous patient leaves his voice. We've done this a few times now, and the exchange is brief. Hand him my card, verify my birthdate, sign here . . . and tell him I appreciate everything he does.
"And keep drinking that tea now."
He laughs and says "You have a good one Ms. Martin.
Now I know saying things like have a good one and have a nice day just roll off the tongue for most folks. But I try to make people, especially employees who are just doing their jobs, feel they are not getting the remote control expression from me. Sometimes I hit it, sometimes I don't. With Mr R. I think drinking tea may be a connection between us, who can say. Something he can look forward to. To make him really smile when he sees my name pop up on his screen. Maybe he'll give a thought to what he'll say to the next person.
The Good Witch of the North called me today just to see how my first few days of treatment went. How many insurance companies have this service I wonder? Now that I'm safely underway, she'll be more in the background and we'll talk again around Thanksgiving, but I know I can call her anytime for anything. A big plus for me is she has a background in Oncology Nursing. We talked for about fifteen minutes about the last few days and my follow ups on a few things. Today when we finished I told her I had to go now. I'm fine now you see, Glinda - on my way down the yellow brick road and you should call another patient who needs you now - because you are good at what you do.
Johns Hopkins has a very efficient system for us. I have an orange "Hopkinscard" that I scan as soon as I get in the door of the Sidney Kimmel Building where everything takes place. The machine spits out a sheet of paper telling me each appointment I have for the day, where they are located, phone numbers at those departments, and a place at the bottom for my vital signs for the day in case I need them taken. I can then proceed to do my thing without worrying that I've forgotten to check in with so-and-so or they can slip in surprises like extra lab work if necessary. They won't call me at home, afraid I'll miss a message telling me to come in early or stay late for something important.
Hopefully the system works.
When my sheet said to see Mr.R in Registration on Tuesday - I put on my happy face even though I thought I wouldn't have to go up there that day. Some days computers are cranky, and Mr. R is one of the Munchkins (yup!) who has to kick his machine sometimes. That was the sad truth on Monday and Tuesday. He had a room full of people and a scanning machine that was just not happy. Between setting up folks for their visits and hauling his butt out of the room to reset the kiosk - Mr. R was lookin' low by the time he got to me. But he knows I'm patient and his smile is genuine for me. "You need liquids, get some water", I say. "I got tea" says he, and soon after he's slurping away and the raspiness I heard with the previous patient leaves his voice. We've done this a few times now, and the exchange is brief. Hand him my card, verify my birthdate, sign here . . . and tell him I appreciate everything he does.
"And keep drinking that tea now."
He laughs and says "You have a good one Ms. Martin.
Now I know saying things like have a good one and have a nice day just roll off the tongue for most folks. But I try to make people, especially employees who are just doing their jobs, feel they are not getting the remote control expression from me. Sometimes I hit it, sometimes I don't. With Mr R. I think drinking tea may be a connection between us, who can say. Something he can look forward to. To make him really smile when he sees my name pop up on his screen. Maybe he'll give a thought to what he'll say to the next person.
The Good Witch of the North called me today just to see how my first few days of treatment went. How many insurance companies have this service I wonder? Now that I'm safely underway, she'll be more in the background and we'll talk again around Thanksgiving, but I know I can call her anytime for anything. A big plus for me is she has a background in Oncology Nursing. We talked for about fifteen minutes about the last few days and my follow ups on a few things. Today when we finished I told her I had to go now. I'm fine now you see, Glinda - on my way down the yellow brick road and you should call another patient who needs you now - because you are good at what you do.
Tuesday, November 6, 2007
Day 2 - piece 'o cake
So now I'm over the 1st day of school jitters. Things went a lot smoother as far as actual treatment process time today. I had a whole passel of students to observe and they were not in the way at all. One got to take off my head apparatus at the end. I really must post a picture of the very cool hockey mask that was molded to keep my head in perfect alignment for the Winkie-rays to do their thing. It resembles a cross between a strawberry basket and the water tube face from the movie The Abyss if you remember that movie.
I'd write more but Bobby just showed me dinner. Left over Chicken Picatta from dinner with Sul and Jim at Carraba's Saturday night and fresh pasta with some kind of sauce he concocted. MMMMMmmmmmm!
I'd write more but Bobby just showed me dinner. Left over Chicken Picatta from dinner with Sul and Jim at Carraba's Saturday night and fresh pasta with some kind of sauce he concocted. MMMMMmmmmmm!
Monday, November 5, 2007
Follow the Yellow Brick Road - Day 1
Cast of Characters:
Dorothy Gale...................................Me!
Toto.................................................My faithful husband - where I am always home, no
The Scarecrow................................My surgeon - my trust in him brought me to this
The Winkies....................................The rays from my beloved 6EX treatment machine,
I used a scene with some of these friends during my few short minutes of therapy today, in fast forward.
In my head I saw Toto leading Scarecrow, Lion and Tinman up the mountain to the Witches Castle. They bonk three Guards over the head, steal their uniforms and sneak in to the castle to free Dorothy. The Guards chase them down at the command of the Wicked Witch of the West, but a carefully thrown bucket of water melts her flat. Turns out the Guards were under a spell and are pleased as punch to help Dorothy out.
So you see! Radiation and Temodar are my secret friends. I was absolutely calm once I got in the door. Last night was a bit nerve wracking, but I had everything ready to go for this morning so I didn't have to think about anything. In the shower this morning I worked out the details, made my plan and planned my visualization for treatment. I even changed the Wicked Witch, so I could melt the tumor. (Besides. I have now met her properly and will deal with that nurse often)
I'm not sick. I'm not tired. I ate a hearty lunch and went to a yarn shop.
Life is good.
Dorothy Gale...................................Me!
Toto.................................................My faithful husband - where I am always home, no
heel clicking needed
The Wicked Witch if the West.........This fr!@#$n tumor
The Wicked Witch if the East.........She started as the WWotW, but I like her better,
so I squashed that image
Glinda, The Witch of the North.......My Aetna insurance nurse - waving her wand
over my smallest troubles
Yellow Brick Road
The Tinman.....................................My Neuroradiologist - it took an oilcan to get to him,but he has a heart
The Cowardly Lion..........................My Neuro-Oncologist - "Put 'em up!...I can fight tumors with
one paw tied behind my back.
The Emerald City............................A green good luck talisman I wear for treatment
The Ruby Slippers...........................Decadron - protecting my brain and boosting my
The Ruby Slippers...........................Decadron - protecting my brain and boosting my
right side in the process!
marching in for battle
The Bucket of Water.......................Temodar, "I'm melting . . . MELTING!
. . . Oh what a world
. . . who ever thought a little pill like you could have destroy my beautiful wickedness
. . . (Ding Dong the Wicked Witch of The West is Dead)
. . . (Ding Dong the Wicked Witch of The West is Dead)
I used a scene with some of these friends during my few short minutes of therapy today, in fast forward.
In my head I saw Toto leading Scarecrow, Lion and Tinman up the mountain to the Witches Castle. They bonk three Guards over the head, steal their uniforms and sneak in to the castle to free Dorothy. The Guards chase them down at the command of the Wicked Witch of the West, but a carefully thrown bucket of water melts her flat. Turns out the Guards were under a spell and are pleased as punch to help Dorothy out.
So you see! Radiation and Temodar are my secret friends. I was absolutely calm once I got in the door. Last night was a bit nerve wracking, but I had everything ready to go for this morning so I didn't have to think about anything. In the shower this morning I worked out the details, made my plan and planned my visualization for treatment. I even changed the Wicked Witch, so I could melt the tumor. (Besides. I have now met her properly and will deal with that nurse often)
I'm not sick. I'm not tired. I ate a hearty lunch and went to a yarn shop.
Life is good.
Did you know the Guards of the Witches' Castle were called The Winkies?
They sing the Brain Tumor Zapping Theme Song.
The Winkies: [singing repeatedly] Oh we oh, yooo ho!
The Winkies: [singing repeatedly] Oh we oh, yooo ho!
Wednesday, October 31, 2007
The Witch of the East
It was bound to happen. Somebody finally pissed me off. Thing is, she didn't admit that I fell through some kind of crack in the floorboards under the well oiled machine and an appointment got screwed up somewhere. Even when I asked point blank what happened she ignored me. Repeatedly. She skirted my question and restated my new appointment information. Told me she had to go now. I can accept that things go wrong with scheduling when there is so much to co-ordinate. What I have a hard time with is ducking responsibility. So unfortunately I have dubbed a nurse the Witch of the East.
Bobby already thinks she dresses like Morticia and I think her makeup makes her look like Sylvester Stallone's mother.
Still. I don't wish a house to drop on her.
Bobby already thinks she dresses like Morticia and I think her makeup makes her look like Sylvester Stallone's mother.
Still. I don't wish a house to drop on her.
Monday, October 29, 2007
Poppies!
Bobby came home from the grocery store with these tonight.
Periodically he does that. Just because
he loves me.
My team continues to impress me. Seems like getting approval from insurance companies for certain drugs can sometimes be a bother. Paperwork must be submitted! My rad/oncologist nurse and My Pharmacist Roz (yes, I have a pharmacist) worked together to get my drugs signed, sealed and delivered without a hitch ~ much the same as my MRI snafu which was painless for me. They worked it all out over a period of three days with shipping overnight tomorrow at no extra cost. I was even approved for a larger amount of a drug in one case, impressing the pharmacist.
FedEx should bring me the goods tomorrow.
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