Hello, all. I finished my fifth chemo last night about 8 pm. Only one more, scheduled for June 19th, the Tuesday after Ann's and Mark's wedding. Dr. Fighter Pilot (Valero) said he really didn't like moving dates like that; I pointed out to him that we'd done it before, when he'd had jury duty. He said O.
Yesterday's schedule was done by a person that MD Anderson obviously hired from the airlines. Blood work at 7. Heart scan at 8. Heart scan takes a while, but I had 45 minutes before the third appointment, which should have been enough, but of course the heart scan machine had a broken heart or something. So I had to go climb onto another one and was running behind by the time they were through. I raced to the third appointment. Valero was running only about an hour late. I was out of there by 11:30. My next appointment -- the chemo -- was scheduled for 5 PM!!
Of course all beds are booked all day long. I went on up to infusion and asked to be put on standby. I got in at 4:15. By then my blood pressure was reading a little high (!), so we had to find me a blood pressure med before we could start infusing. I called Chuck at 7:30, and he and Casey picked me up just before 8 pm. Not so bad.
Honestly there must be 50 beds in that unit and they were ALL full, all day. Folks are dying to get in there. ahee. Sorry.
I do sometimes feel like kind of a fraud because I'm not sick, exactly. So many of those people look just awful and you know they feel like hell, too. I'm just annoyed and retaining fluid.
We're coming up to the holiday weekend, and I'll be down and whining by Sunday morning but hopefully bouncing back by Tuesday. Busy days ahead.
Hope all are well. We are fine. Soon there will be hair!!
Friday, May 25, 2007
Tuesday, May 08, 2007
Ok. Really. Do I have to help the cause of medical science too?
I am planning to back out of the study I said I'd be a part of. Why? Well, because I'm a bad and selfish person. Also, if the study is as loopy as the steps and missteps I've witnessed to get into the damned thing, they'll probably kill me. So here's how it went.
When I first met with the oncologist Dr. Valero back in February, he asked me if I would be part of a study about bone health and cancer drugs and all that. He said it would be a heckuva deal. I'd be put on one or another clinical trial drugs and I wouldn't have to pay for my Actonel the whole time. That appealed to me. Free meds! I says ok, and he says someone will contact me.
Someone called me at work and then mailed me a form. I read the form and called her and asked if she wanted me to mail it back. She said no, that they'd meet with me the next time I was in. So, I stopped taking the Actonel thinking that that drug would be given when I had chemo. But Dr. V didn't mention it at my chemo appointment, and honestly I was so nervous about my first chemo I had forgotten to ask.
When the second chemo came up, three weeks later, I mentioned to Dr. V that I thought I was supposed to be part of a study, and he said, "Yes, they will contact you." But no one did. DITTO at the third appointment.
When I got my appointment schedule in the mail for the fourth chemo, there was a visit to a dental oncologist scheduled for mid-morning. When I got into see Valero, I asked, "Why am I going to a dentist?" He replied, "The study people should have explained that to you," and he went ahead to explain that they'd be checking my teeth to make certain that my teeth-bones (whatever) were in good shape for one of the protocols I'd be on. I said I hadn't heard from anyone and he said he'd find her.
Then a nice person named Kimberly came in and had me sign a bunch of papers. She said I'd be in one of three protocols -- two drugs are administered by mouth, one by infusion. I said fine. I figured if I drew infusion, I'm already having that done every three weeks anyway.
THEN, I get through chemo 4 last Thursday. And then YESTERDAY, when I'm home feeling like someone should have gotten the license number on the garbage truck that ran me down, Kimberly calls to tell me that I've been randomized to the infusion group and that I have an 8 am this morning. I said, "Uh, no. I don't think I'm going to feel like dragging myself in for yet another infusion, given that I'm five days out from chemo. Also, I'm not supposed to get stuck with a needle, even a clean one, this close to chemo, am I?" (I mean, it's in ALL the paperwork. It's why I can't get a pedicure, for God's sake.)
Kimberly says, "Oh, that's ok for this." By which she means, WE can stick you and risk your getting an infection for our study, but your toes have to look like they've been done by a three year old for six months. So I say I can't make it, and she says brightly, "Fine. We can postpone it. I can set you up for Friday." I said I'd call her back.
And when I do call her back, I'm going to tell her I'm not playing unless the infusions can take place during the chemo. First, a "30 minute infusion at MD Anderson" involves driving there, remembering to apply the lidocaine to that the needle doesn't hurt, paying $11 to park the car, having them weigh me, applying more lidocaine, taking my blood pressure, making "oooo" noises about the blood pressure, putting me in a bed, and dripping me with stuff. Oh yes. And remember that NO ONE IS EVER ON TIME at MD Anderson. Each of my chemo sessions has been at least an hour late, if not more. My 10 am appt with the dental oncologist the other day happened at NOON. I'm thinking half a day each time. Good grief. I got a job, people.
So, whattya think? Am I justified here in denying them my body and my time for research? I need an amen.
When I first met with the oncologist Dr. Valero back in February, he asked me if I would be part of a study about bone health and cancer drugs and all that. He said it would be a heckuva deal. I'd be put on one or another clinical trial drugs and I wouldn't have to pay for my Actonel the whole time. That appealed to me. Free meds! I says ok, and he says someone will contact me.
Someone called me at work and then mailed me a form. I read the form and called her and asked if she wanted me to mail it back. She said no, that they'd meet with me the next time I was in. So, I stopped taking the Actonel thinking that that drug would be given when I had chemo. But Dr. V didn't mention it at my chemo appointment, and honestly I was so nervous about my first chemo I had forgotten to ask.
When the second chemo came up, three weeks later, I mentioned to Dr. V that I thought I was supposed to be part of a study, and he said, "Yes, they will contact you." But no one did. DITTO at the third appointment.
When I got my appointment schedule in the mail for the fourth chemo, there was a visit to a dental oncologist scheduled for mid-morning. When I got into see Valero, I asked, "Why am I going to a dentist?" He replied, "The study people should have explained that to you," and he went ahead to explain that they'd be checking my teeth to make certain that my teeth-bones (whatever) were in good shape for one of the protocols I'd be on. I said I hadn't heard from anyone and he said he'd find her.
Then a nice person named Kimberly came in and had me sign a bunch of papers. She said I'd be in one of three protocols -- two drugs are administered by mouth, one by infusion. I said fine. I figured if I drew infusion, I'm already having that done every three weeks anyway.
THEN, I get through chemo 4 last Thursday. And then YESTERDAY, when I'm home feeling like someone should have gotten the license number on the garbage truck that ran me down, Kimberly calls to tell me that I've been randomized to the infusion group and that I have an 8 am this morning. I said, "Uh, no. I don't think I'm going to feel like dragging myself in for yet another infusion, given that I'm five days out from chemo. Also, I'm not supposed to get stuck with a needle, even a clean one, this close to chemo, am I?" (I mean, it's in ALL the paperwork. It's why I can't get a pedicure, for God's sake.)
Kimberly says, "Oh, that's ok for this." By which she means, WE can stick you and risk your getting an infection for our study, but your toes have to look like they've been done by a three year old for six months. So I say I can't make it, and she says brightly, "Fine. We can postpone it. I can set you up for Friday." I said I'd call her back.
And when I do call her back, I'm going to tell her I'm not playing unless the infusions can take place during the chemo. First, a "30 minute infusion at MD Anderson" involves driving there, remembering to apply the lidocaine to that the needle doesn't hurt, paying $11 to park the car, having them weigh me, applying more lidocaine, taking my blood pressure, making "oooo" noises about the blood pressure, putting me in a bed, and dripping me with stuff. Oh yes. And remember that NO ONE IS EVER ON TIME at MD Anderson. Each of my chemo sessions has been at least an hour late, if not more. My 10 am appt with the dental oncologist the other day happened at NOON. I'm thinking half a day each time. Good grief. I got a job, people.
So, whattya think? Am I justified here in denying them my body and my time for research? I need an amen.
Thursday, May 03, 2007
Exotic patient complement at MD Anderson
They say people from all over the world come to MD Anderson. However, a large complement seems to be from Gulf Coast and deep East Texas, and many of those seem to be unclear on the concept of "indoor voice." There is a big-voiced man sitting too close to me (about half the length of a football field away) who makes Larry Murphy and David Ross sound positively upper class British. And he's chatty.
He bought him a 72 Chevelle and paid only 8 hunnert dollers for it, cause the woe-man who owned that thang had the same bank as him and we just done the deal right thar.
The best car I ever bought for her (her is sitting next to him) was a Ford EEEE-lite. No, wait. They bought that off the showroom floor but she didn't lak it so we tuk it back and got a two yar old Mercurry off the used lot there at Lone Store Ford (say MERcurry out loud to approximate the pronunciation) that had been owned by a doctor and that thang drove perfect for yars. 38 malls to the gallon.
He just said they might be interested in a Hyundai, once they get back home, They're real popaler and they look nass, those hon-dees.
Other interesting sightings: There was a woman in full chador (is the the right word?) in the breast center waiting room earlier. She was quiet. Draped completely in black from head to foot, she revealed only her dark pretty eyes. I was thinking, "I bet it's easy for YOU to get dressed in the morning . . ."
Chemo #4 starts about 1 pm or whenever I get over there. Right now I'm waiting in dental oncology, with Mr. Mercurry Chevelle and "her." This appt is to get me started in some kind of study. Whatever. Pat Caver is bringing lunch and magazines for the duration.
He bought him a 72 Chevelle and paid only 8 hunnert dollers for it, cause the woe-man who owned that thang had the same bank as him and we just done the deal right thar.
The best car I ever bought for her (her is sitting next to him) was a Ford EEEE-lite. No, wait. They bought that off the showroom floor but she didn't lak it so we tuk it back and got a two yar old Mercurry off the used lot there at Lone Store Ford (say MERcurry out loud to approximate the pronunciation) that had been owned by a doctor and that thang drove perfect for yars. 38 malls to the gallon.
He just said they might be interested in a Hyundai, once they get back home, They're real popaler and they look nass, those hon-dees.
Other interesting sightings: There was a woman in full chador (is the the right word?) in the breast center waiting room earlier. She was quiet. Draped completely in black from head to foot, she revealed only her dark pretty eyes. I was thinking, "I bet it's easy for YOU to get dressed in the morning . . ."
Chemo #4 starts about 1 pm or whenever I get over there. Right now I'm waiting in dental oncology, with Mr. Mercurry Chevelle and "her." This appt is to get me started in some kind of study. Whatever. Pat Caver is bringing lunch and magazines for the duration.
Tuesday, May 01, 2007
Possibly more effective than brandishing a firearm
The guy in the Taurus who cut me off on 59 yesterday seemed really amused watching me rant at his face in his rear view mirror. It was clear he could understand my mouthing the words "dumb-ass" (among others) and had full view of all my graphic gestures, but when I could bear his smarmy grin no longer, I snatched my wig off and threw it at my own windshield while calling him even more hideous names.
His smile disappeared at once. His face went pale.
He exited the freeway, most likely to head to the nearest confessional. "Bless me, Father, for I have changed lanes without signalling, and caused some lady in a Honda to tear her hair off."
We can only hope.
Amen.
His smile disappeared at once. His face went pale.
He exited the freeway, most likely to head to the nearest confessional. "Bless me, Father, for I have changed lanes without signalling, and caused some lady in a Honda to tear her hair off."
We can only hope.
Amen.
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