Last night I was sick again. This thing is not giving up without a fight. I was actually angry as I hung over the bowl. "Get out, you bastard," I mumbled between heaves. "You're not going to beat me. Get out." Mrs P thought I was sending her away at first, then she realized I was talking to the cancer. Sure it's crazy, but so is sitting on the edge of the tub with somebody who is puking his guts out. We all have our little madnesses. That's as good a definition of love as any, I guess.
I definitely feel as if this is the hard part. My body is revolting against the treatment pretty violently. The nausea is worse than it's ever been, and it comes faster than the drugs can keep up. My skin is really charred looking. I use the lotion that they gave me, but still look more like a burned french fry around my neck and upper chest. The fatigue amazes me. I think I'm probably awake for about five hours a day. The radiation is taking its toll.
My consolation is that if I feel this bad, the cancer must feel a whole lot worse.
Back when we made my original treatment plan, my last chemo was scheduled for tomorrow. Mercifully, I've been spared that third date. The cisplatin on top of the radiation was too much for my bone marrow to handle. Thank God. From what I've read and from what Mrs P's brother is going through, I think chemo is much harder on the body than this radiation I'm getting. Those people are the real cancer warriors. I feel like I'm way behind the front lines compared to some of my friends who are getting weekly infusions. Weekly, for god's sake! I don't see how they can live through it.
Been quiet this morning. Mrs P has gone to church. No stomach churning for me today. So far. I know better than to try to predict the future. Two big events to hope for this week. I want to get to the park to see RENT. I also want to see my last radiation treatment on Thursday. The weather forecast is threatening all week, but that's typical late July weather in the Bluegrass. I'm just hoping for those late night storms that always make sleeping so pleasant. That will keep things cool and let the cast play their hearts out without worrying about the rain. Weather won't affect my treatments so much, though I'm always soaked with sweat when it's a rainy morning. I don't know if it's the humidity or if the damp just starts a kind of wicking effect in my skin. I know it's kind of ookey when I lift my bald head up from the plastic pillow block and it pops off with that wet sucking sound.
I have spoken with Jake about hacking into my blogger account. I've told him it's OK for him to write, but that he just needs to ask me first. I have a feeling his mamma may have helped him, but he is too loyal to narc her out. I can respect that.
Peace,
pennsy
"He not busy being born is busy dying." ~ Bob Dylan
Showing posts with label chemo. Show all posts
Showing posts with label chemo. Show all posts
Sunday, July 18, 2010
Friday, July 9, 2010
#220: Wiped Out
They told me that the second round of Chemo would hit a lot harder than the first. I just checked my posts from the first week. It was pretty bad then, too. Today I sat in the bathroom and could barely muster the strength to make anything happen anywhere. The good news is that the nausea is not so bad yet. I'd be happy to skip that part if possible.
The biggest symptom I'm having right now, besides the gummy throat, is fatigue. Like wow, fatigue. Like, let me just stop walking right here for a minute to recover from those ten steps I just took. This morning, I was doing the old man walk, for sure. Shuffling steps. Working hard to keep my head up. It's funny. I don't feel any pressure to put up a front unless I'm in view of someone else who has cancer. That's when I want to look my best. Someone who feels like me doesn't need to see some other schmuck schlepping himself down the hall.
"How do you feel, today," Shug asked. She's one of the radiation techs. She has some unpleasant sounding nickname that thay call her, so I decided she should be "Shug" as in "Sugar."
"I feel one hundred times better, Shug. Of course, I still feel like crap. But a much bette class of crap today."
I try to always shout a joke down the hall when they call my name. It usually gets a laugh in both directions, waiting room and treatment area. We need all the laughs we can get down in those lead lined rooms.
Mrs P and Jake just went out for a ride. He needs to have his nails trimmed, and he's incorrigible about letting her do them. You'd think she was trying to cut off his toes. I know it can be a dicy operation, but she's been grooming animals for many, many years. Jake just won't have any of it from her. We're hoping that Dr D's magic touch will be enough to calm him down. Meantime, I'm staying quietly at home today, too tired to move.
Gonna have to cut this post short. I'm breaking a sweat just typing to you today. Back to bed, I guess.
Peace,
pennsy
The biggest symptom I'm having right now, besides the gummy throat, is fatigue. Like wow, fatigue. Like, let me just stop walking right here for a minute to recover from those ten steps I just took. This morning, I was doing the old man walk, for sure. Shuffling steps. Working hard to keep my head up. It's funny. I don't feel any pressure to put up a front unless I'm in view of someone else who has cancer. That's when I want to look my best. Someone who feels like me doesn't need to see some other schmuck schlepping himself down the hall.
"How do you feel, today," Shug asked. She's one of the radiation techs. She has some unpleasant sounding nickname that thay call her, so I decided she should be "Shug" as in "Sugar."
"I feel one hundred times better, Shug. Of course, I still feel like crap. But a much bette class of crap today."
I try to always shout a joke down the hall when they call my name. It usually gets a laugh in both directions, waiting room and treatment area. We need all the laughs we can get down in those lead lined rooms.
Mrs P and Jake just went out for a ride. He needs to have his nails trimmed, and he's incorrigible about letting her do them. You'd think she was trying to cut off his toes. I know it can be a dicy operation, but she's been grooming animals for many, many years. Jake just won't have any of it from her. We're hoping that Dr D's magic touch will be enough to calm him down. Meantime, I'm staying quietly at home today, too tired to move.
Gonna have to cut this post short. I'm breaking a sweat just typing to you today. Back to bed, I guess.
Peace,
pennsy
Sunday, July 4, 2010
#213: Side Effects
Shakes. That's what I've got today. One of the drugs that comes with my chemo treatments is a steroid that tastes like peaches. I think that's the one, anyway. It really hypes me up. This is a good thing. One of my friends warned me that the steroids turned him into a real jerk. They just make me annoying. I finally wore Mrs P out with my fidgeting and chatter so she put herself down for a nap. I'm typing, but my hands are really shaking. Don't think I could handle a teaspoon full of soup right now.
I've been very lucky with side effects. I appear to have a sunburn from my cheeks down to the middle of my chest. That's from the radiation. Also the mucosa thingy I've described. Nothing earth shattering. Fungal and other biotic infections that are pretty quickly killed off. Oh, and everything tastes like dog butt.
My chemo drug is called Cisplatin. It's a pretty old drug, but still effective. The list of side effects is daunting. I've had only the highlighted ones.
•Nephrotoxicity - causes damage to the kidneys
•Neurotoxicity - causes damage to the nerves
•Nausea and vomiting - one of the most likely to cause severe nausea and vomiting
•Ototoxicity - hearing loss which is currently not treatable
•Alopecia - hair loss, not a common side effect
•Electrolyte imbalance - causes various problems with cell operation
•Decrease of blood cells in bone marrow
•Thrombocytopenia (low blood platelet count)
•Leucopenia (low white blood cell count)
•Myelosuppression (decrease in bone marrow effectiveness)
•Changes in how food tastes
•Frequent diarrhea
•Numbness in the extremeties
•Extreme fatigue
Today I went back into the infusion center to get a shot of something whose name I didn't catch. Grace, who only called me "Hon," today - I was a little disappointed - told me the name then mentioned that the syringe full she was about to give me cost $6800. I kind of blacked out after that. The drug is intended to boost the functioning of my bone marrow and to get my white blood cells back in business. Grace really is a good nurse and an artist with a needle. I fled absolutely nothing as she stuck me in the left triceps and injected the mystery drug. Some people tolerate it pretty well. Others develop flu-like symptoms including aches that may be severe enough to require breaking out the Percocet. I don't want to be sick tomorrow. I want to go to the park to see The Merchant of Venice tomorrow night. That's the final dress rehearsal and I'm trying to avoid the really big crowds later in the week. Cancer is all about adjusting. And watching Shakespeare stoned isn't the worst thing in the world. I can think of several productions I've seen that would have been greatly improved by a few pain killers.
We took a trip to the Wal-Mart today. I prefer Meijer, but didn't feel up to the cross-town drive. Since we needed both groceries and medical supplies, we sort of walked cross-town instead. Water was in one corner of the store. Isopropyl alcohol and Ensure was in the opposite corner. Naturally there is no path "as the crow flies" from one end of the store to the other so we went arooooound. Twice. By the time we hit the check out line, I was pretty beat. We had a coupon for Ensure which our cashier forgot to scan. She looked pretty lost when we pointed it out, so we volunteered to go over to the customer service desk. Since that's my station at Meijer, I spent the whole time critiquing the disorder and the cool behavior of the person behind the desk. I would have treated us much better. Just sayin'.
Back home then, a two can tube feeding, and here to chat with you for a while. Someone posted a great scripture on the Motley Fool today. I loved it so much that I put it in my bio on this blog. I'll close with it.
We are afflicted in every way, but not crushed; perplexed, but not driven to despair. - 2 Corinthians 4:8
AMEN!
Peace,
pennsy
I've been very lucky with side effects. I appear to have a sunburn from my cheeks down to the middle of my chest. That's from the radiation. Also the mucosa thingy I've described. Nothing earth shattering. Fungal and other biotic infections that are pretty quickly killed off. Oh, and everything tastes like dog butt.
My chemo drug is called Cisplatin. It's a pretty old drug, but still effective. The list of side effects is daunting. I've had only the highlighted ones.
•Nephrotoxicity - causes damage to the kidneys
•Neurotoxicity - causes damage to the nerves
•Nausea and vomiting - one of the most likely to cause severe nausea and vomiting
•Ototoxicity - hearing loss which is currently not treatable
•Alopecia - hair loss, not a common side effect
•Electrolyte imbalance - causes various problems with cell operation
•Decrease of blood cells in bone marrow
•Thrombocytopenia (low blood platelet count)
•Leucopenia (low white blood cell count)
•Myelosuppression (decrease in bone marrow effectiveness)
•Changes in how food tastes
•Frequent diarrhea
•Numbness in the extremeties
•Extreme fatigue
Today I went back into the infusion center to get a shot of something whose name I didn't catch. Grace, who only called me "Hon," today - I was a little disappointed - told me the name then mentioned that the syringe full she was about to give me cost $6800. I kind of blacked out after that. The drug is intended to boost the functioning of my bone marrow and to get my white blood cells back in business. Grace really is a good nurse and an artist with a needle. I fled absolutely nothing as she stuck me in the left triceps and injected the mystery drug. Some people tolerate it pretty well. Others develop flu-like symptoms including aches that may be severe enough to require breaking out the Percocet. I don't want to be sick tomorrow. I want to go to the park to see The Merchant of Venice tomorrow night. That's the final dress rehearsal and I'm trying to avoid the really big crowds later in the week. Cancer is all about adjusting. And watching Shakespeare stoned isn't the worst thing in the world. I can think of several productions I've seen that would have been greatly improved by a few pain killers.
We took a trip to the Wal-Mart today. I prefer Meijer, but didn't feel up to the cross-town drive. Since we needed both groceries and medical supplies, we sort of walked cross-town instead. Water was in one corner of the store. Isopropyl alcohol and Ensure was in the opposite corner. Naturally there is no path "as the crow flies" from one end of the store to the other so we went arooooound. Twice. By the time we hit the check out line, I was pretty beat. We had a coupon for Ensure which our cashier forgot to scan. She looked pretty lost when we pointed it out, so we volunteered to go over to the customer service desk. Since that's my station at Meijer, I spent the whole time critiquing the disorder and the cool behavior of the person behind the desk. I would have treated us much better. Just sayin'.
Back home then, a two can tube feeding, and here to chat with you for a while. Someone posted a great scripture on the Motley Fool today. I loved it so much that I put it in my bio on this blog. I'll close with it.
We are afflicted in every way, but not crushed; perplexed, but not driven to despair. - 2 Corinthians 4:8
AMEN!
Peace,
pennsy
Monday, June 28, 2010
#206: Change in the Treatment Plan
I saw more doctors today than I did all of last year, I think. One of the things I didn't know about cancer treatement is they you don't actually have a doctor, you have a team. There's the surgery team, the radiation team, and the chemo team. Before I started at Markey Cancer Center the surgeon was the lead, along with nurses, nurse practicioners, radiology techs, my family doctor. Once the surgery was finished, it was off to the big leagues with a medical oncologist, oncological nurses, med students, nutritionist, pharmacologist, on the chemo team. Then on the radiation side there's the radiological oncologist, physicists, nuclear medical technologists, associates, residents, med students, and the nurses and nurses assistants who weigh me, draw my blood, check my history, and generally make me feel better. I think I was touched by 15 different medical professionals today. They palpated my neck, drew blood, shined lights down my throat, I don't know what all else. Mostly, they encouraged me. We're almost half-way through, and I'm doing great.
The bad/good news is that my white blood cell count is a little down. That combined with the chills I've been experiencing had them concerned enough to postpone my chemo until Saturday. They were concerned that this might disrupt my independence day celebrations. Screw that. I'll celebrate when I can eat brats again. Meanwhile, it's back to the radiation table. The good news part of this equation is that they are eliminating my last chemo course. I'll be having only this one on Saturday, then the radioactive team will bring it on home.
I learned a few things about my throat today. What I have is called "mucosal denudation." Mucosa is the slippery skin inside your mouth. Well inside most of you, actually. Denudation means what it sounds like: stripping away. What's happening to my throat is that the skin is cooking away because of the radiation. It's as if I had sunburn on the inside. That's why my throat only hurts when I use it. Swallowing is like rubbing two sunburned arms together. They gave me some analgesic mouth rinse to use, and also some more antibiotics to try to get my blood counts back in order. I think that's all the new meds. It's a little hard to keep track. I'd be lost without Mrs P.
Someone from Tennessee sent me a lovely gift today, a CD that I'm enjoying right now. Trouble is, I don't recognize the address or the signature. I'd love to thank you personally, but if you'd rather not, I'm thanking you here.
The bad/good news is that my white blood cell count is a little down. That combined with the chills I've been experiencing had them concerned enough to postpone my chemo until Saturday. They were concerned that this might disrupt my independence day celebrations. Screw that. I'll celebrate when I can eat brats again. Meanwhile, it's back to the radiation table. The good news part of this equation is that they are eliminating my last chemo course. I'll be having only this one on Saturday, then the radioactive team will bring it on home.
I learned a few things about my throat today. What I have is called "mucosal denudation." Mucosa is the slippery skin inside your mouth. Well inside most of you, actually. Denudation means what it sounds like: stripping away. What's happening to my throat is that the skin is cooking away because of the radiation. It's as if I had sunburn on the inside. That's why my throat only hurts when I use it. Swallowing is like rubbing two sunburned arms together. They gave me some analgesic mouth rinse to use, and also some more antibiotics to try to get my blood counts back in order. I think that's all the new meds. It's a little hard to keep track. I'd be lost without Mrs P.
Someone from Tennessee sent me a lovely gift today, a CD that I'm enjoying right now. Trouble is, I don't recognize the address or the signature. I'd love to thank you personally, but if you'd rather not, I'm thanking you here.
Wednesday, June 23, 2010
#197: No Time To Waste
A quick trip to bed was followed by chills, blankets, a hat Mum had crocheted for me, and more heaves throughout the night and into the morning. Thank God for Ambien.
This was kind of a reality check for me. I really can't plan for good days or bad days. Just have to take them as they come. After 40 years of acting, I'm finally learning what "here and now" really means. Cancer doesn't give you the luxury of looking ahead. Especially when you're at the coin-toss level of prognosis. Doc says I have a fifty-fifty change of seeing my 55th birthday. We'll 50% is a lot. But there's a 100% chance that I'm alive, awake, and not throwing up right now. I'll have to settle for that.
I've been working at getting to know the other members of the radiation club, a group of four families who happen to be in the waiting room as the same time every morning. There's the lady from West Virginia who is staying here with her husband while she gets treatment. She doesn't have any teeth either. Gum Cancer. Never smoked. Never drank. She is sweet, but very afraid. There's the middle aged couple who have a farm outside of town. She loves her animals in the way that only a farmer can. They take them to vacation bible school and show kids what Jesus was talking about when he spoke of sheep and goats and pigs and such. Then there's the preacher and his wife. He and I are on just about the same schedule as far as treatment and side effects. We are usually within a few hours of each other with good and bad days. He's a very handsome, fit man. I can just picture them going to church. Him in his big black robe. Her in her colorful Sunday dress and enormous church hat. We sit together and talk with one another. "How was your night?" the patients ask one another. "How is he doing?" the spouses offer. It's a tight little fraternity. We all have life and death in common. I guess that's always true, but you're rarely so aware of the empty chair waiting for him to come in and sit down with you.
We all know we're going to die one day. It just doesn't usually matter quite so much. I find myself driven to lift people up around me. I joke and tease and flirt. I kiss my wife. I insist on telling Mum I love her, even if we're not used to that kind of bluntness. There simply isn't time to waste being stupid any more. There isn't time to waste pretending to be cool or aloof or the smartest guy in the room. I'm just another guy who is going to die. Just like you. We don't have time for anything but loving one another.
Well, and the occasional dry heave. That I make time for.
Peace,
pennsy
Monday, June 21, 2010
#195: Hey, He Ain't Got No Hair!
During the meal, a tiny voice piped up in the booth behind us. I love listening to children talking in restaurants, but this one almost made me sneeze milk through my tender, irradiated nose. "Hey, he ain't got no hair!" she cried, delighted at her discovery. Her grown up companions immediately began to shush her in that embarrassed way parents have when what they really want to do is laugh their butts off. Then the kicker. "I want to eat his ears."
By this point, it was all Mrs P could do to stay upright in her seat. After an appropriate pause, I whispered, "I'm sure she isn't talking about me." Mrs P prairie-dogged up out of the booth for a quick scan around the restaurant. "Nope," she said, her face red and tears of laughter streaming, "I'm gonna have to disagree." Apparently, mine was the only bald head within view. It was pretty clear that somebody in our section was either a chemo patient or a neo-Nazi. I'm guessing the parents were relieved that I had no tattoos.
So yeah, I'm bald now. I decided not to wait for the medicine to do its evil on me. And I was getting a little neurotic about grabbing little fingerfuls of hair to see if it was coming out yet. It's much, much cooler in the Kentucky heat, and all my hats fit better, too.
 |
| I knew him, Horatio. |
It started out as a beard trim. The treatments have stopped my hair from growing, and my mustache in particular had stopped in a really prickly place. It was irritating my lips. I started getting this nasty crusty stuff around my mouth and I really don't need to be discouraging anyone who feels inclined to kiss me right now. So yes, I started out to trim my mustache and wound up shaving my head. I never was much of a one for moderation. In a way, I feel a little phony. I haven't really "earned" my chemo stripes yet. Your hair doesn't fall out after one treatment. On the other hand, it does make me feel more like a warrior. I'm fighting for my life, and I want this cancer to know I'm serious about it..
Besides, I look much younger without all that grey hair. And you must admit, I have a great looking head. Better than this guy, anyway. And check out the scar on my neck. Tell me that isn't a sure fire chick magnet. All I need is a bolt sticking out.
Peace,
Pennsy
Monday, June 7, 2010
#176: The First Day of Chemo
This post is much longer than I expected. Sorry, it was a pretty eventful day. I'll talk chemo today and radiation tomorrow - Pennsy
Last night was a late one. There was a blog to post, my news reader to catch up on, a couple days worth of Facebook status updates to read. Yeah, I was stalling. Finally got to bed about 1:00. Mum was still awake, reading. I don't think either of us wanted to face the dreams that our evening was likely to hold. We were both awake again at about 3:30. Mrs. P's alarm went off at 6:00. I got up and made a vanilla protein shake. That's what goes in the spot where I put three Marlboros and half a pot of coffee back in the old days.
Then it was time to flush my PEG tube. This involves taking a large syringe and running clean water through the tube four or five times a day just to keep it clear. We also change the dressing around it then. Because the stoma is still pretty new, it leaks a little. Usually nothing newsworthy. Except this morning on the gauze we found something that looked suspiciously like the spinach and mushroom dish I enjoyed at our favorite Indian restaurant yesterday.
We were faced with two equally fearful prospects. First, there was a possibility that stomach contents were leaking. This is very bad mojo. The juice in your stomach is designed to break down organic tissue. Having it sloshing around inside your abdomen is a terrible plan. Second, it was certain that I was going to have to admit that I spent my last day before chemo - a therapy almost assured to cause nausea - gumming on enough curry and tandoori to bust a gut. Mrs P, ever the student of those forensic procedural shows, bagged and tagged the evidence so we could take it with us to the cancer center.
There is such comfort in falling into a routine someone else knows well. After a short wait, we moved from sign-in to triage, from triage to the treatment room. "Dee", the nurse from my medical oncologist's office was summoned to examine the verdant discharge on my bandages. After a thorough examination of the tube site, the team agreed that the green stuff was gross, a little hilarious, and harmless. The Chemo could proceed.
"Rodger", the chemo nurse explained the procedure to me. He would give me two litres of fluid, then a bag of medicine, then two more litres of fluid. The "medicine" is very dangerous to the kidneys, so they do all they can to keep them flushed clean. I should feel free to get up and use the bathroom at the first urge. We would be working my radiation treatment into the schedule sometime during one of the two hydration periods.
Two children in white lab coats were my next visitors. I was shocked the first time I saw a police officer on a subway car who was clearly much younger than I. I have started to feel the same way about a lot of the wonderful young people who are working to save me. They are brilliant and competent, but they are also so fresh-faced that they make me want to ask for ID before I show them my scar.
He was my pharmacist. She was his student and not his prom date, as I had assumed. He told me about the specific medicines i was going to be using. My kidneys could fail. My hearing could be damaged. My esophagus might swell shut. My bowels could stop moving. Gotta love this kid. While Mum and Mrs P took careful notes, (God bless them,) he went over each of the pills I'd be taking home. Steroids, anti-nausea potions, more anti-nausea potions, even more anti-nausea potions. "Don't lose these," he cautioned after showing us one particularly potent pellet, "they cost about two thousand dollars a piece." So that's where the nausea comes from.
The girls worked crossword puzzles and did needlework while I listened to my iPod and gazed out the window of our little cubicle. Time dripped through the pump that fed the juice into my left wrist. I had to move my LiveStrong bracelet to my right arm. In the process, it got turned around so the lettering faced away from me. I reversed it again so I could read it. The words are for me, not to impress other people.
When it was time, after about two hours, Rodger and another nurse came in with a large IV bag in a dark amber shroud, almost the color of a beer bottle. I should be so lucky. They were wearing blue haz-mat robes and gloves to protect their skin from the stuff that would soon be pumping into my veins. Like missile officers reviewing launch codes they triple-checked my identity.
"What is your name and birthdate?"
"My records show him as ... born on..."
"His wrist band shows him as so and so, birthdate thus and such, patient number..."
"I have him as patient number..."
"The bag contains..."
"My records show that the bag should contain..."
Check, check, and check.
There were a lot of light-hearted moments in the room. This was not one of them. this was some nasty stuff. How nasty is it? My pee is toxic. I had to use a special bathroom on the ward. The staff could not be exposed to the chemicals they were giving me or they might experience all the wicked side effects they'd been telling me about for two months. I have to "double-flush" to make sure none of the stuff they are putting on me winds up in the bowl at home when someone else uses it. Disinfect seat and handle. Nasty stuff.
As the chemo was finishing, a dear friend who is on the staff came down to visit with us for a while. She offered to walk us over to the radiation therapy building once I was back on fluids again. Rodger set me up, and we trundled my little IV pole across the courtyard. It was a beautiful Bluegrass afternoon. We laughed and joked and drank in the air and the energy of the young people enjoying their lunches at picnic tables. We probably walked 150 yards. It felt like a mile.
After radiation, which I mostly slept through, we made our way back to the ward. It wasn't long before I was finished and feeling worn out. We arrived at 8:00 in the morning and left around 3:00. That's all the typing I can stand today. Sorry I can't craft a more artful ending. We'll talk about radiation tomorrow.
Peace,
pennsy
Last night was a late one. There was a blog to post, my news reader to catch up on, a couple days worth of Facebook status updates to read. Yeah, I was stalling. Finally got to bed about 1:00. Mum was still awake, reading. I don't think either of us wanted to face the dreams that our evening was likely to hold. We were both awake again at about 3:30. Mrs. P's alarm went off at 6:00. I got up and made a vanilla protein shake. That's what goes in the spot where I put three Marlboros and half a pot of coffee back in the old days.
Then it was time to flush my PEG tube. This involves taking a large syringe and running clean water through the tube four or five times a day just to keep it clear. We also change the dressing around it then. Because the stoma is still pretty new, it leaks a little. Usually nothing newsworthy. Except this morning on the gauze we found something that looked suspiciously like the spinach and mushroom dish I enjoyed at our favorite Indian restaurant yesterday.
We were faced with two equally fearful prospects. First, there was a possibility that stomach contents were leaking. This is very bad mojo. The juice in your stomach is designed to break down organic tissue. Having it sloshing around inside your abdomen is a terrible plan. Second, it was certain that I was going to have to admit that I spent my last day before chemo - a therapy almost assured to cause nausea - gumming on enough curry and tandoori to bust a gut. Mrs P, ever the student of those forensic procedural shows, bagged and tagged the evidence so we could take it with us to the cancer center.
There is such comfort in falling into a routine someone else knows well. After a short wait, we moved from sign-in to triage, from triage to the treatment room. "Dee", the nurse from my medical oncologist's office was summoned to examine the verdant discharge on my bandages. After a thorough examination of the tube site, the team agreed that the green stuff was gross, a little hilarious, and harmless. The Chemo could proceed.
"Rodger", the chemo nurse explained the procedure to me. He would give me two litres of fluid, then a bag of medicine, then two more litres of fluid. The "medicine" is very dangerous to the kidneys, so they do all they can to keep them flushed clean. I should feel free to get up and use the bathroom at the first urge. We would be working my radiation treatment into the schedule sometime during one of the two hydration periods.
Two children in white lab coats were my next visitors. I was shocked the first time I saw a police officer on a subway car who was clearly much younger than I. I have started to feel the same way about a lot of the wonderful young people who are working to save me. They are brilliant and competent, but they are also so fresh-faced that they make me want to ask for ID before I show them my scar.
He was my pharmacist. She was his student and not his prom date, as I had assumed. He told me about the specific medicines i was going to be using. My kidneys could fail. My hearing could be damaged. My esophagus might swell shut. My bowels could stop moving. Gotta love this kid. While Mum and Mrs P took careful notes, (God bless them,) he went over each of the pills I'd be taking home. Steroids, anti-nausea potions, more anti-nausea potions, even more anti-nausea potions. "Don't lose these," he cautioned after showing us one particularly potent pellet, "they cost about two thousand dollars a piece." So that's where the nausea comes from.
The girls worked crossword puzzles and did needlework while I listened to my iPod and gazed out the window of our little cubicle. Time dripped through the pump that fed the juice into my left wrist. I had to move my LiveStrong bracelet to my right arm. In the process, it got turned around so the lettering faced away from me. I reversed it again so I could read it. The words are for me, not to impress other people.
When it was time, after about two hours, Rodger and another nurse came in with a large IV bag in a dark amber shroud, almost the color of a beer bottle. I should be so lucky. They were wearing blue haz-mat robes and gloves to protect their skin from the stuff that would soon be pumping into my veins. Like missile officers reviewing launch codes they triple-checked my identity.
"What is your name and birthdate?"
"My records show him as ... born on..."
"His wrist band shows him as so and so, birthdate thus and such, patient number..."
"I have him as patient number..."
"The bag contains..."
"My records show that the bag should contain..."
Check, check, and check.
There were a lot of light-hearted moments in the room. This was not one of them. this was some nasty stuff. How nasty is it? My pee is toxic. I had to use a special bathroom on the ward. The staff could not be exposed to the chemicals they were giving me or they might experience all the wicked side effects they'd been telling me about for two months. I have to "double-flush" to make sure none of the stuff they are putting on me winds up in the bowl at home when someone else uses it. Disinfect seat and handle. Nasty stuff.
As the chemo was finishing, a dear friend who is on the staff came down to visit with us for a while. She offered to walk us over to the radiation therapy building once I was back on fluids again. Rodger set me up, and we trundled my little IV pole across the courtyard. It was a beautiful Bluegrass afternoon. We laughed and joked and drank in the air and the energy of the young people enjoying their lunches at picnic tables. We probably walked 150 yards. It felt like a mile.
After radiation, which I mostly slept through, we made our way back to the ward. It wasn't long before I was finished and feeling worn out. We arrived at 8:00 in the morning and left around 3:00. That's all the typing I can stand today. Sorry I can't craft a more artful ending. We'll talk about radiation tomorrow.
Peace,
pennsy
Wednesday, May 26, 2010
#170: Setbacks and Delays
I can't help smiling when I remember that night in the recovery room when I thought that Cancer had been awfully easy to lick. I half-expected them to pat me on the head and send me back to work. No such luck.
Just because the surgeons removed all that they could see doesn't mean that they got it all. There were cells outside of the main tumor, and it had reached the lymph nodes in my neck. I was going to need both radiation and chemotherapy to clean up what they might have missed.
The meeting with the radiotherapy oncologist was pretty jarring. She described the procedure to me, and told me about the side effects I should expect. Loss of taste. Sunburn like burns on my neck. Hair loss. Sores in my throat and mouth. Nausea. Lots of pain. For at least six to eight weeks. We scheduled my first appointment with the medical oncologist (the chemo doctor) and left the clinic on shaky knees.
The morning I was to meet the chemo doc for the first time, I got an urgent call from the Cancer center. Blue Cross had determined that my Cancer was a "pre-existing condition." My insurance would not be paying for any radiation or chemo. The lady at Lexington Clinic was very kind and assured me that they would find alternatives for me. Mrs P was working, but Mum was there in the room when I hung up the phone. She wept for my suffering. I wept for my humiliation. After a lifetime of hard work and playing "by the rules" I was being pawned off as a charity case. I blamed the insurance company. I blamed the man who fired me two years ago, costing me my life's savings and my comprehensive medical coverage. I blamed myself for trying to make a career in the arts where poverty was practically guaranteed. And I blamed God in whose image I had been made, reputedly.
Late that afternoon, the Clinic called to let me know that the University of Kentucky's Markey Cancer Center would accept me as a patient. They would be able to help me with the financial aid I needed. Actually, what she said was that they were big enough to absorb the loss of treating me. They had made an appointment for me. My treatment would be set back a week.
At the Markey Center I met Dr. K. He and his team examined me much more thoroughly than they had at the Clinic. They discovered a loose tooth. We would need to see a dentist about that. He also explained to me that because of the damage the therapy would do to my throat, there was a good chance I wouldn't be able to swallow for most of the time I was getting radiation. If that happened, I would need a feeding tube. Rather than interrupt my therapy to put one in, Dr. K recommended that we install the tube before my first treatment. Now I had a dentist appointment and an outpatient surgery to complete before radiation could begin. I still hadn't met a chemo doc.
As we looked at the x-rays together, the dentist was very kind and to the point. I had advanced periodontal disease, a chronic infection of the tissue connecting my teeth to my head. Radiation would destroy my saliva glands and compromise my immune system. The infection in my gums would spread to my teeth, even my bones. I could wind up losing my lower jaw. All of which would interrupt my therapy and give the Cancer a chance to gain a new foothold.
My teeth were shot. They all had to come out. The next day, if possible.
Another office. Another kind administrator explaining that payment would be expected at the time of treatment. Yes she understood that I would die without the procedure. Yes, she was very sorry. If we could pay half up-front, they would bill us for the rest. Mrs P scrambled to find friends and relatives who would lend us the money for the down payment. The next day, all my teeth were gone. And my treatment had been delayed another two weeks while my mouth healed.
I finally got to meet Dr. Arnold, the medical oncologist. She asked why I had waited so long after my surgery to start chemo. I tried to tell her the story without cursing. She and her team examined me. I had developed "Thrush," a fungal infection on my tongue. Mrs P said it was from all the antibiotics I had been taking. They would need to get that under control before starting chemo. We also needed to schedule a morning to have my feeding tube put in. I expected this to take about five hours. I'm not sure why.
Two mornings ago, I reported to the hospital. They sedated me before I knew what was happening. I woke up feeling as if I had been shot in the belly. In theory, the idea of installing a hose through your skin and directly into your stomach is incredibly cool. I even found videos of the procedure on YouTube. In practice, having someone poke a hole through the muscles of your abdomen really, really hurts. You know all those exercises in the gym that are designed to develop your core? They're there because you use the muscles around your middle for almost everything you do from getting out of a chair, to drawing a breath, to using the bathroom. The surgeon poked a hole in my core, and left about 14 inches of rubber hose hanging out of it. Ouch. I spent the night in the hospital, eating Percocets like M&M's.
Today, I got the call from my medical oncologist, Dr Arnold. We're going to have to delay my treatment while I recover from this "minor" procedure. Chemo and radiation were scheduled to start tomorrow, now they will not begin until June 7. Ideally, radiation should start within four weeks of surgery. My operation was six weeks ago.
I'm really scared tonight. I'm afraid of what is happening inside my throat while we figure out which specialist gets the next crack at me, and who's going to pay for it. I'm afraid that the pain I'm feeling now is nothing compared to what I'll be feeling once therapy starts going full bore. I'm afraid that the steady hold I have kept on my emotional health so far could slip at any time turning me into an angry SOB lashing out at the people who love me so much. I'm afraid God has forgotten me and my family. I'm afraid that, as bad as it's been, we "ain't seen nothing yet."
I wish I had a glib little spiritual bonbon to throw in here. Some soothing bumper-sticker theological insight that would make us all feel better. But the truth is, I haven't got a thing. Tonight, I'm just scared. And that's going to have to be enough for me. There aren't any easy answers to be found. So I'll just have to sleep on the hard questions for a little while longer.
Just because the surgeons removed all that they could see doesn't mean that they got it all. There were cells outside of the main tumor, and it had reached the lymph nodes in my neck. I was going to need both radiation and chemotherapy to clean up what they might have missed.
The meeting with the radiotherapy oncologist was pretty jarring. She described the procedure to me, and told me about the side effects I should expect. Loss of taste. Sunburn like burns on my neck. Hair loss. Sores in my throat and mouth. Nausea. Lots of pain. For at least six to eight weeks. We scheduled my first appointment with the medical oncologist (the chemo doctor) and left the clinic on shaky knees.
The morning I was to meet the chemo doc for the first time, I got an urgent call from the Cancer center. Blue Cross had determined that my Cancer was a "pre-existing condition." My insurance would not be paying for any radiation or chemo. The lady at Lexington Clinic was very kind and assured me that they would find alternatives for me. Mrs P was working, but Mum was there in the room when I hung up the phone. She wept for my suffering. I wept for my humiliation. After a lifetime of hard work and playing "by the rules" I was being pawned off as a charity case. I blamed the insurance company. I blamed the man who fired me two years ago, costing me my life's savings and my comprehensive medical coverage. I blamed myself for trying to make a career in the arts where poverty was practically guaranteed. And I blamed God in whose image I had been made, reputedly.
Late that afternoon, the Clinic called to let me know that the University of Kentucky's Markey Cancer Center would accept me as a patient. They would be able to help me with the financial aid I needed. Actually, what she said was that they were big enough to absorb the loss of treating me. They had made an appointment for me. My treatment would be set back a week.
At the Markey Center I met Dr. K. He and his team examined me much more thoroughly than they had at the Clinic. They discovered a loose tooth. We would need to see a dentist about that. He also explained to me that because of the damage the therapy would do to my throat, there was a good chance I wouldn't be able to swallow for most of the time I was getting radiation. If that happened, I would need a feeding tube. Rather than interrupt my therapy to put one in, Dr. K recommended that we install the tube before my first treatment. Now I had a dentist appointment and an outpatient surgery to complete before radiation could begin. I still hadn't met a chemo doc.
As we looked at the x-rays together, the dentist was very kind and to the point. I had advanced periodontal disease, a chronic infection of the tissue connecting my teeth to my head. Radiation would destroy my saliva glands and compromise my immune system. The infection in my gums would spread to my teeth, even my bones. I could wind up losing my lower jaw. All of which would interrupt my therapy and give the Cancer a chance to gain a new foothold.
My teeth were shot. They all had to come out. The next day, if possible.
Another office. Another kind administrator explaining that payment would be expected at the time of treatment. Yes she understood that I would die without the procedure. Yes, she was very sorry. If we could pay half up-front, they would bill us for the rest. Mrs P scrambled to find friends and relatives who would lend us the money for the down payment. The next day, all my teeth were gone. And my treatment had been delayed another two weeks while my mouth healed.
I finally got to meet Dr. Arnold, the medical oncologist. She asked why I had waited so long after my surgery to start chemo. I tried to tell her the story without cursing. She and her team examined me. I had developed "Thrush," a fungal infection on my tongue. Mrs P said it was from all the antibiotics I had been taking. They would need to get that under control before starting chemo. We also needed to schedule a morning to have my feeding tube put in. I expected this to take about five hours. I'm not sure why.
Two mornings ago, I reported to the hospital. They sedated me before I knew what was happening. I woke up feeling as if I had been shot in the belly. In theory, the idea of installing a hose through your skin and directly into your stomach is incredibly cool. I even found videos of the procedure on YouTube. In practice, having someone poke a hole through the muscles of your abdomen really, really hurts. You know all those exercises in the gym that are designed to develop your core? They're there because you use the muscles around your middle for almost everything you do from getting out of a chair, to drawing a breath, to using the bathroom. The surgeon poked a hole in my core, and left about 14 inches of rubber hose hanging out of it. Ouch. I spent the night in the hospital, eating Percocets like M&M's.
Today, I got the call from my medical oncologist, Dr Arnold. We're going to have to delay my treatment while I recover from this "minor" procedure. Chemo and radiation were scheduled to start tomorrow, now they will not begin until June 7. Ideally, radiation should start within four weeks of surgery. My operation was six weeks ago.
I'm really scared tonight. I'm afraid of what is happening inside my throat while we figure out which specialist gets the next crack at me, and who's going to pay for it. I'm afraid that the pain I'm feeling now is nothing compared to what I'll be feeling once therapy starts going full bore. I'm afraid that the steady hold I have kept on my emotional health so far could slip at any time turning me into an angry SOB lashing out at the people who love me so much. I'm afraid God has forgotten me and my family. I'm afraid that, as bad as it's been, we "ain't seen nothing yet."
I wish I had a glib little spiritual bonbon to throw in here. Some soothing bumper-sticker theological insight that would make us all feel better. But the truth is, I haven't got a thing. Tonight, I'm just scared. And that's going to have to be enough for me. There aren't any easy answers to be found. So I'll just have to sleep on the hard questions for a little while longer.
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