November 2002 rediagnosed with a recurring tumor I am going to bring you through the whole fun thing
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This is where you stick random tidbits of information about yourself.
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Brain Tumor History And Other Rants
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Saturday, March 15, 2003
Here's the first run through of what the first 7 days of chemo has been like, I might be adding / editing this but this has some cool stories, not for the weak stomached!!!
3/11/03 First Round of Chemo
If you don’t want details, don’t start this, if you want the whole train wreck read on!!
First day load up the car with stuff. Mo is taking me into the city. Have to be there at 9am. We drive into the city on an icy morning (OK I know enough with the drama). I am setting up here. Crappy roads, lots of traffic you get the picture. We get to the hospital. Mo decides to spend the day in the city (remember it is a snowy icy day, good choice!) I go into the clinic. First they stick a line in me. Oh, let’s not forget I had to bring in my past 24 hours worth of urine. So they could see my kidney function. Very pleasant. That goes to the lab. They decide to get some fluid running in me in the meantime while we are waiting for the lab results to come back. They need to know how much poison to put in me. The nurse was mad at me for not eating, their theory is eat whenever you feel you can because for the next five days you won’t feel too much like eating. So they ordered me a buttered bagel. They kick a little girl out of a room to let me have privacy for the day. Being I am the new kid on the block. So I get this standard room overlooking the city. Nice 21 inch TV VCR DVD combo, have to grab that on the way out. They hook me up to a line of saline solution. I am just hanging out reading my book.
3/13/03 Let’s try to continue this while I am feeling a little better here.
They shoot me up with an anti-nausea drug to keep my stomach quiet. My nurse is really helpful. The social worker comes in and introduces himself to me. This guy can talk I am about to find out.
So he starts to go through his whole rap. This guy is helpful for services like trying to figure out your benefits to psycho stuff. So straight to the juice here, the guy lays out when you can and can’t have sex, how, and masturbation times. Go figure! So if you want to know now I have a cycle similar to a woman. The first week of chemo you don’t want anything to do with anything because you feel sick. The second week you need to get your blood levels. If your platelets are low no self-pleasure. He doesn’t get into all the reasons. If your red counts are low no nookie nookie. Whites low you will be tired and not want to. It’s all about the blood counts! Hey do you really want to know about all the boring stuff, no. So he splits. The doctor has a great nurse practicioner that comes in. Explains all side effects possible to me, gives me some new prescriptions. We are talking I am walking around with like 10 drugs through this whole thing. In between my visits I am taking in fluids through my vein including CarboPlatin a chemo drug, and reading a lot. Oh and don’t forget the gatekeeper. The receptionist at this doctor’s office is not the friendliest woman in the world. So Maureen goes to visit her old job in the city (while it’s snowing none the less), while I am getting my junk. She comes back at one point and is sitting in the reception area. Unaware that she can just walk right back. She asks the receptionist about my status, she asks someone and says he is going to be like another hour. Never saying go back and visit. She is a character, but I am working on her.
So the day is up they let me leave. I am feeling pretty good, maybe all the fluid has my blood thin, I am all dopey on the way home to my girlfriends parents house. For those of you who don’t know I live like 60 miles out in the styx of New Jersey, so the plan was to stay in Brooklyn for the night because we had to be back in the doctors office in the morning. So we get back to Brooklyn, still feeling nothing, I eat some soup, and bread for dinner, a meal for any king right? Now just like the day before I have to collect my urine in a brown jug! Yes, so I warn her sister that the brown jug in the bathroom is not iced tea. I start slowly melting it seemed by like 8:00pm. Now I have to take 5 pills which are a second chemo treatment (Tamadar) I am taking also, for five days. I take the pills and Zofran which is an anti-nausea pill. Also I take 3 pills of Tegretol an anti-seizure medication I have been on for like 3 ½ years, since tumor number 1. Yes 9 pills, ok we are all on the same page (I now have a pill box thingy of plastic with 28 boxes, I know your are jealous, no I am not 100 years old). I fall asleep, I wake up, man my tummy hates me. This theme goes on for the whole night when I wake up. My tummy HATES me. Yeah, this is the good stuff I read about the nausea stuff. Finally I watch the VCR clock it’s like 5am, and I know I am not going to sleep feeling this.
I kept a mantra going all night, like counting sleep, “I am not nauseas.” Hint number 1: You can’t lie to yourself about this stuff. So about 5am, I make a dash for the bathroom with my faithful waiting bucket. If I had cookies I would have lost them. So this is it. I am a chemo pro, sick for the 1st time. I go back to bed feeling some relief, hey there’s always calm right after the climax right? And I took a peppermint mint out of candy jar, hey, peppermint is supposed to help with feeling nausea right?
I lay there and the wave of nausea slowly builds back up. At this point, Maureen’s sister is getting ready for work and her mother has headed to the shower. Now I am thinking where can I go to be sick. I mean come on you just want to be alone in this condition. So it happens again, I go running into the hallway next to the entertainment center, on all fours, what a sight this is in the dark! Oh and the peppermint did improve the taste of the second sickness! (I just wanted to tie in the mint’s usefulness).
It’s 5:45 Maureen hears it and comes out. Looks in the bed, “Where are you?” And spots me on the floor with my faithful bucket. I am a mess, literally. You ever get sick from drinking and when you get sick you go, I am never ever, ever going to drink again (the Drunk prayer). Keep that in mind for the next part. I am basically freaked. Tearing up, crying, snoting up (not my finest hour here). I start telling her, “I am not going to do this. I am not going back there today, I am not taking these drugs anymore forget it. I can’t take it I have been feeling sick all night. I don’t care, I will take what I got left, I can’t live like this. Man I was not a happy camper. So I am sitting there on the floor and her dad walks by from the bathroom, he looks over, “Is he alright?” he says. Maureen says yeah he’s just sick. These are some damn crazy times. Yes this all took place in the first 24 hours!!! So Maureen is telling me to shut up and she is going with me in the morning to tell the nurses that I said I was quitting. For those of you who don’t know, you don’t win a fight with this woman, or with many women for that case, but with Mo, you NEVER win.
So I take one of the anti-nausea pills, after much arguing that nothing in the world could possibly stay down. I go in to the bathroom to wash up, brush the teeth. Believe it or not the thing kicks in fast. I come out of the bathroom and I am hungry, where’s my Brooklyn bagel. So we pack up and leave for the Doctors office for round 2.
I get to the doctors office, Mo is with me. The nurse asks how my night was, I try to give the cliff notes version of our fearful patient here. She continues to apologize, heck it aint her fault. They draw blood, take the pee bucket, and hook up more fluid.
I see the social worker again. Hey the guy just shows up and I am sitting there alone and tied to a line, so I am a captive audience. He starts by telling me that he wants to make sure that I am aware of a particular side effect. Hair loss. He goes it is one that usually doesn’t show up with your drugs, and we have played it down in the past. But of course they had a 17 year old girl going through this and BAM all the hair came off of her. I told him I was aware of it, and hell I don’t care.
Now this guy can go through all sorts of psycho babble stuff also, and keep in mind I aint feeling to hot. He starts going through well you are a strong person a fighter the whole yard. I am feeling like hell, he means well all that stuff but hey, I am a big pile of crap right now.
Needless to say I tell my story over and over for like 3 or 4 different nurses. Another day of fluids and drugs. Now we go home to Jersey (insert joke here). I am Feeling kind of crummy. It’s 5pm so traffic is nuts we are talking a nice 2 hour commute. Hey, I usually work in the city, now Mo can see the time I put in both ways to and from work.
I get home and it’s rest and pill time, still feeling crummy (you will see this theme continues from Friday, all the way to Thursday of the following week at least.
The whole weekend I feel like a pile of dog doo doo and basically do nothing but read and breathe and shower once every 24 hours, hey at least I did that. Monday I go back to the doctors office for some more fluids, because I got a bit dehydrated over the weekend.
They bring me in and first things first they take my temperature, blood pressure and weight. Hey ladies, 3 pounds I lost the first weekend. You jealous yet? Yep when I am done here I am inventing the chemo diet, you will not eat!
They hook up a new line. They pump me the whole day full of like 4 bags, damn I am not a fish. Maureen dropped me off and went to Brooklyn to avoid parking costs. They tell me to call her, and then I tell them I am really feeling crappy so now they want to stabilize that. I get a couple new prescriptions.
Mo meanwhile thought I was going to come down stairs and meet her, but of course I am now fetal position up stairs, with no where to throw the car, she throws it in the lot (man they suck, over-charging-money-taking-bastids). She comes up and I explain they are just trying to get me feeling better. So again we leave in rush hour, another great commute. Another night of pills and nausea, hey you were wondering.
Tuesday, Wednesday, Thursday all pretty uneventful. Feeling like crap, I actually got back into the TV thing a little. Now for the record the only good thing on TV during the day is the 4 hour block of Maury, Springer, Maury and Springer. Stay home for a while and you tell me. Hey I even watched Cable Guy, how bad is that? So a whole lot of doing nothing but hating my tummy, even fresh air made me feel sick. So staying inside was my friend. What could I eat, not a whole lot. Jello, soup, toast, banana’s, rice a roni, now here’s the problem with feeling sick for a week. Some things that you ate already while you felt like crap but you force yourself to eat, you don’t want to eat again. The reason being is the last time you ate them you felt sick. Again back to the alcohol thing, a lot of people never go back to that certain shot they drank once and got sick on. So as the week wore on food choices got less it seemed. I mean one day I ate a fruit bowl of peach apple banana and kiwi. I tried that Wednesday morning now check it out, I wake up wash up brush my teeth the whole thing. Yeah fruit bowl that will taste great. I peel and wash a kiwi, apple, peach, and banana. I sit down with my fork take a piece of peach and I feel a burning pain like a knife going down the inside of my cheek down my throat. What the hell? I try both sides of my mouth, same thing. I call Mo at work, hey every guy should send their woman to work, and stay at home (look what I am going through to stay at home). She says yeah call the nurses. So it is like 9 am and the nurses are just getting in. I call up, I get the gatekeeper, and ask for a nurse, she finds one, I describe the sensation. She goes it is probably a mucus reaction something or other, do you have bumps in your mouth, I feel around with my tongue. Um, no, she says well the banana is good but don’t eat the other stuff. Great seal up the tupperwear and there goes breakfast. I am sick of bland stuff. She said she would check with the doctor and call me back with any suggestions. So breakfast was a wash.
Now this week I also set this thing online up. I was just writing all this up for some future use. Sure I could have a best seller, people reading of my health train wreck, right. So my boss mentioned it before a blog. I was like what the hell is that. So here it is. With a lot of time on my hands and a bunch of encouragement, Holley convinced me to put this up.
Now it is Thursday night and I am due back at the doctors in the morning, now the blood levels get checked. Let’s see how chemo is going to wack my blood systems.
5:58 PM
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