I've never learned to surf but I cannot imagine the very first surfer just grabbed a big plank of wood and was immediately shooting the curl on the first try.
Tuesday I tried to be a good soldier. I got out of bed early enough to get a good breakfast and space out those pills again and be on time for my second official day as the hotdog in the microwave. We got off a little late for the unknown amount of traffic into town but no harm done. Zap and another round of giggles from the regular morning technicians for the same Mr. Scofield, no call me John jokes. I told my sister I need to get some new material to keep top billing.
Afterwards, Jody had not had any breakfast for herself and we had a bit more than an hour wait to see the oncology nurses to have my little port flushed. Dr. Grasso had strongly suggested it the day before on pain of having to remove a clogged port and do the whole thing over again. Quick, get me to the oncologist! In that hour wait we visited Dunkin Donuts to get a coffee for her and a Gatorade for me; just in case the heparin flush left me with a bad taste. We endured the smells of burning something and rather lacklustre coffee and got the heck out of there. I was getting more and more drowsy by the minute and wondering if this was a good schedule to try to keep if I hoped to continue working.
Turns out that yesterday's altered schedule worked better. Instead of breakfast beforehand, I got nuked first then came home to eat and poison myself figuring I'd rather get sleepy at home than on the road. Jody had to go downtown very early and we'd not arranged for anyone to drive me instead so I drove myself. I was fine all the way through. Breakfast late (~8:30am) actually charged me up and I was feeling very good by 9; even with the pills on my stomach. No nausea but a little reflux from Monday before but otherwise raring to go.
Tuesday had been an emotional day to start with. My thoughts often wandered to my friend Mark and his friend Linda whom we had met for dinner in Manhattan the night of Sept 9th, 2001. She was lost in the towers on Sept 11th and she is my most personal reminder every year.
Tuesday was also when my pal James had vowed to pound out the work to get my BMW back on the ground. I was riding these waves of physical and emotional pain all day only to hit that perfect wave of happiness right before bed. Jody said I looked the best I had in days as the car methodically came back together. It lasted through Wednesday and is boosting me still this morning as I write this post. Thank you, James. :)
Yesterday I dusted off old friendships and found them just as warm as always having lunch with several of my oldest friends from work. I'd needed to share the news with these guys too but there was a very surreal kind of hiccup to carefully plan my way past. I don't want to go into detail here because the hiccup is fantastic and strange and wonderful and very very private for a family I care very much for and this just isn't the venue for it. Suffice it to say I really did not want to share my news with them while they are in the midst of what's happening around them but I firmly believe, still even, that this is all happening for a very good reason and as part of a very perfect plan for all of us.
Dinner went down smooth and the reflux is better this morning. In an hour I'll be on my own long board of sorts ready for today's waves. Microwaves that is.
Ba dum CHEE!
Thursday, September 13, 2007
Monday, September 10, 2007
Perspective
Today rather sucked as my days have gone by lately. I may be able to chalk a lot of it up to anxiety because Lord knows I woke up more than nervous.
I made a few slices of that peach crumble bread as toast, grabbed a bottle on Ensure, and a tall glass of water... to go with the four Xeloda pills. I spaced the out as I ate but only after staring them down and praying hard that I could do this.
I looked at them in the little Pyrex dish I used to keep my hands off of them. I'm afraid of handling them too much and passing their poison on to Jody or the dogs or someone else. I told them, "Okay, you're going to make me sick. But only so much." Jody woke up and I went to the top of the stairs to just hug her and cry for a bit because, well, I'm scared. I'm more afraid of the pills because I know I could just flush them instead of taking them. But if I do that, I will not get better. I have to get worse before I can get better.
A few hours later Jody and I arrived at the radiologist for my first radiation treatment today. That went okay with just a slight hiccup on when I would actually get my first treatment. The Xeloda was sitting just fine and my sense of humor was back. The technicians kept addressing me as Mr. Scofield, Mr. Scofield, and I finally said, laying prone on the table, "Listen, my pants are down. You guys can call me John. Okay?" That got a few laughs and I endured an itch on my ankle for... ev... er...
Jody took me to lunch at La Madelaine and I ordered too much. A little more than half a French Dip sandwich and a cup of soup went down easy but got me pretty tired by the time we got back home. The plan had been to split up and go to work.
But we called Dr. Grasso's office for some more advice on caring for the incision and the port. We could drop by any time and Jody did not want to get caught i rush hour traffic. As I went for the door, a wave of nausea struck me and I figured, this time, I'll take one of the pills I've been prescribed for this. Maybe the Xeloda isn't all that great after all?
Big mistake. The Compazine knocked me silly. I tried to ride it out in the truck but I was mroe falling asleep than not feeling ill. By the time we reached Dr. Grasso's, I was falling asleep in between steps. They got me back into the exam room and Dr. Grasso checked me out. The incision is not infected (a big worry) and the liquid skin stuff will come off on its own. My blood pressure was a little elevated and my heartrate was 100... he reckoned between the medicines and the anxiety that I'd worked myself up pretty good. Message received. Chill.
I prayed and dozed on the way home and crashed. I got a call from my pal Steven whom schemed his pal Nate into coming over this afternoon and sparing off the wheels on my car. Now I can drive in the rain safely. The summer tires coming off the front of the car are nearly done though the rear tires are in very fine shape. I should have rotated them between track days earlier this year but I seem to remember being really tired at those times...
The second round of chemo is down the hatch so Day One is complete. I think I may need to grab a small bag of black licorice instead of the Compazine to fight off any nausea. At least until I go to full time off and can afford to be wiped out for a day if I have to resort to the Compazine again.
I'd whined earlier what Day Fifty-Nine or Sixty would be like if Day One was this bad. However, I have two good legs and a faithful spouse on my path; two things I've learned two others whom I used to be close to no longer have in their lives. So I need to remind myself that this -is- my path and that it has been fortunate to not have been dragged on far longer than need be.
I made a few slices of that peach crumble bread as toast, grabbed a bottle on Ensure, and a tall glass of water... to go with the four Xeloda pills. I spaced the out as I ate but only after staring them down and praying hard that I could do this.
I looked at them in the little Pyrex dish I used to keep my hands off of them. I'm afraid of handling them too much and passing their poison on to Jody or the dogs or someone else. I told them, "Okay, you're going to make me sick. But only so much." Jody woke up and I went to the top of the stairs to just hug her and cry for a bit because, well, I'm scared. I'm more afraid of the pills because I know I could just flush them instead of taking them. But if I do that, I will not get better. I have to get worse before I can get better.
A few hours later Jody and I arrived at the radiologist for my first radiation treatment today. That went okay with just a slight hiccup on when I would actually get my first treatment. The Xeloda was sitting just fine and my sense of humor was back. The technicians kept addressing me as Mr. Scofield, Mr. Scofield, and I finally said, laying prone on the table, "Listen, my pants are down. You guys can call me John. Okay?" That got a few laughs and I endured an itch on my ankle for... ev... er...
Jody took me to lunch at La Madelaine and I ordered too much. A little more than half a French Dip sandwich and a cup of soup went down easy but got me pretty tired by the time we got back home. The plan had been to split up and go to work.
But we called Dr. Grasso's office for some more advice on caring for the incision and the port. We could drop by any time and Jody did not want to get caught i rush hour traffic. As I went for the door, a wave of nausea struck me and I figured, this time, I'll take one of the pills I've been prescribed for this. Maybe the Xeloda isn't all that great after all?
Big mistake. The Compazine knocked me silly. I tried to ride it out in the truck but I was mroe falling asleep than not feeling ill. By the time we reached Dr. Grasso's, I was falling asleep in between steps. They got me back into the exam room and Dr. Grasso checked me out. The incision is not infected (a big worry) and the liquid skin stuff will come off on its own. My blood pressure was a little elevated and my heartrate was 100... he reckoned between the medicines and the anxiety that I'd worked myself up pretty good. Message received. Chill.
I prayed and dozed on the way home and crashed. I got a call from my pal Steven whom schemed his pal Nate into coming over this afternoon and sparing off the wheels on my car. Now I can drive in the rain safely. The summer tires coming off the front of the car are nearly done though the rear tires are in very fine shape. I should have rotated them between track days earlier this year but I seem to remember being really tired at those times...
The second round of chemo is down the hatch so Day One is complete. I think I may need to grab a small bag of black licorice instead of the Compazine to fight off any nausea. At least until I go to full time off and can afford to be wiped out for a day if I have to resort to the Compazine again.
I'd whined earlier what Day Fifty-Nine or Sixty would be like if Day One was this bad. However, I have two good legs and a faithful spouse on my path; two things I've learned two others whom I used to be close to no longer have in their lives. So I need to remind myself that this -is- my path and that it has been fortunate to not have been dragged on far longer than need be.
Sunday, September 9, 2007
goooood karma
I'm a hair overdue with my thankyous for some really cool gifts that friends and neighbors have brought by to help cheer me up. They're working, I promise, so um... keep them coming! ;)
First up is Kim and company's tres cool bonsai California wine grape vine. I was totally not expecting this and I've endeavoured to keep it watered every day just as its instruction sheet directs. Is this awesome or what? I reeeally hope it offers up some bonsai grapes next year... that would be so cute!
Next is a little bushel delivered by Mina and her daughter Sophie today. It is filled with a tub of peanut-butter cup brownies, two bags of spicy snacks, a bag of peach gummis (Mmmmm!), a bag of candy corns, a jar of sugar-free Cherry jam (loaded with cancer-killing pectin!), and a loaf of peach crumble bread I intend to toast to help the chemo go down.
Last but not least is Clarence's gift to soothe my inner rock star; a copy of Guitar Hero II for XBox360. He came over unexpectedly the night before the port surgery last Wednesday and had this big giant box. Inside was a guitar controller and the videogame that plays a lot like Dance Dance Revolution; hit the notes as they appear on screen and 'strum' the guitar to play. I thought he'd bought himself the game and was giving me a go but then I remembered he hasn't got a '360. I asked him why he bought it and he said he thought I would enjoy it. :P I've air-guitar'd for decades so I should be a natural.
First up is Kim and company's tres cool bonsai California wine grape vine. I was totally not expecting this and I've endeavoured to keep it watered every day just as its instruction sheet directs. Is this awesome or what? I reeeally hope it offers up some bonsai grapes next year... that would be so cute!
Next is a little bushel delivered by Mina and her daughter Sophie today. It is filled with a tub of peanut-butter cup brownies, two bags of spicy snacks, a bag of peach gummis (Mmmmm!), a bag of candy corns, a jar of sugar-free Cherry jam (loaded with cancer-killing pectin!), and a loaf of peach crumble bread I intend to toast to help the chemo go down.
Last but not least is Clarence's gift to soothe my inner rock star; a copy of Guitar Hero II for XBox360. He came over unexpectedly the night before the port surgery last Wednesday and had this big giant box. Inside was a guitar controller and the videogame that plays a lot like Dance Dance Revolution; hit the notes as they appear on screen and 'strum' the guitar to play. I thought he'd bought himself the game and was giving me a go but then I remembered he hasn't got a '360. I asked him why he bought it and he said he thought I would enjoy it. :P I've air-guitar'd for decades so I should be a natural.
Ow still.
I just looked back at that previous posting and noticed what time it was. Shortly thereafter the painkiller rejection started. The bottle had one of those little stickers on it that said, 'take with food if nausea occurs.' Well, it occurred, and occurred again, and again. It was like someone had a big button connected to my stomach. No amount of feeling it coming or breathing my way through it helped.
So the painkillers were no longer helping. Looking up the ingredients, the bulk of the pill was good old fashioned acetaminophen; Tylenol. So I switched. By Friday evening, the swelling had tacitly lessened though the pressure and ache were still present.
Friday was punctuated by another nasty phone call from the radiologist' resident paperwork nazi who claimed she didn't have my referrals for treatment. I explained this was taken care of a week ago and that -all- of the visits had been approved. I hate arguing with idiots and I wished I'd just reminded here -again- to call my case manager; a resource I'd given them from my very first visit. I'm still ticked off enough to plan to raise the roof on Monday if there is any question when I make my first treatment visit. I do not intend to leave this lady's rude broken-English hassle lay. Communicating clearly and politely ought to be a requirement in her position.
This made for a lengthy Saturday with a few downer moments. It's only been a few days since Lockheed told me to cut my hours and while I disagreed, I hate that it looks like I will need the time off sooner than later. Getting in and out of my own car was a small test on my sloped driveway. Knowing the tires need to be swapped but knowing I can't do it felt crummy too. It's leaving me feeling like the cancer is allowed to take and take and take away from me and I can't do anything about it. :(
Btw, the above pic is what I look like when I'm trying to appear my most weak and downtrodden. The smirk gives away that I am trying to look like I feel bad but am really just feeling bummed out. ;)
For the record, the incision and my smirk are about the same size. What you cannot see is the contour of my chest below my collar bone that has changed. Aside from the swelling where the sickly yellow bruise is there is a nice bump where the port now lives more toward my sternum. It's about the size of a Dove Chocolate Miniature with three little bumps on its face to help locate the squishy part for needles. As the swelling and the pain have gone down, I've poked around it while reading the collection of literature it came with. Imagine that; me reading the owners manual. One nice thing I noticed almost by accident is that my seat belt does not squash the little guy. If we still happen to be attached to one another by the time I can hit the track again, I don't think I'll have to worry about high braking g's. :D
Friday, September 7, 2007
I have been assimilated. Ow.
Just a short one today I think. My frame of reference for with the port going in yesterday was the twilight sleep I got for the colonoscopy and having my wisdom teeth taken out ages ago. I figured I'd be conked out for the procedure and then dopey for the afternoon with a little bump and some stitches where it went it. Not so. :(
When I woke up I found a pretty big incision glued over with some new kind of liquid suture. Nearby was the bump of the port (here is a link to the one I got... pretty fancy!) and the whole area was tight as a drum. To give you a better picture, imagine your chest muscles as quadrants on a compass. My whole northeast is hurting. On a map of the world, all of Europe and Asia is where I'm talking about.
At the hospital, they gave me two nice rounds of painkiller that had me feeling pretty good. I finally got something to eat at half past four (we'd gone in before nine thirty and I hadn't eaten since that same hour the night before). Graham crackers and a Dixie cup of cranberry juice never tasted so goo. I also got a little liquid painkiller to tide me over until we got my script filled for the stuff I could take at home.
Trouble was I lost all of that a fraction of the way back. Jody's little truck is very softly sprung and has such a short wheelbase that anything faster than 40mph or so was rocking me like a little boat in a big storm. My apologies to any beltway commuters who may have caught a glimpse of me on the phone with my friend Raaaaaalph.
I was between wretching and crying the rest of the way home but once we got stopped and I got some fresh air, my stomach wasn't a problem. My appetite came right back and my folks brought me some Feel Good Noodles. I don't know why, but that was all I wanted to eat last night. My left solar plexus though, that was killing me. I felt like I'd been punched with a bowling ball-sized fist. Still do actually. While Jody got the painkillers for me I tried to ice it down, numb it, and just cry to get past it all. The swelling really hurt and the painkillers took time to kick in.
They eventually did though I'd estimate they're only cutting it down by about half. Overnight I dropped two more rounds on schedule and I'm hoping today goes well. I got a little chilled and woke up stiff this morning but Jody, whom I do not deserve, got our heating pad for me to help warmly loosen things up. I'm typing this now and planning to call Dr. Grasso today for any advice on stretching/working the muscles to make sure I neither hurt myself nor atrophy.
Here I am with my trademark fakey grin (tm) before I knew what was actually going to happen. I was soooo naive... but that is the last IV needle in my arm for a long time.
When I woke up I found a pretty big incision glued over with some new kind of liquid suture. Nearby was the bump of the port (here is a link to the one I got... pretty fancy!) and the whole area was tight as a drum. To give you a better picture, imagine your chest muscles as quadrants on a compass. My whole northeast is hurting. On a map of the world, all of Europe and Asia is where I'm talking about.
At the hospital, they gave me two nice rounds of painkiller that had me feeling pretty good. I finally got something to eat at half past four (we'd gone in before nine thirty and I hadn't eaten since that same hour the night before). Graham crackers and a Dixie cup of cranberry juice never tasted so goo. I also got a little liquid painkiller to tide me over until we got my script filled for the stuff I could take at home.
Trouble was I lost all of that a fraction of the way back. Jody's little truck is very softly sprung and has such a short wheelbase that anything faster than 40mph or so was rocking me like a little boat in a big storm. My apologies to any beltway commuters who may have caught a glimpse of me on the phone with my friend Raaaaaalph.
I was between wretching and crying the rest of the way home but once we got stopped and I got some fresh air, my stomach wasn't a problem. My appetite came right back and my folks brought me some Feel Good Noodles. I don't know why, but that was all I wanted to eat last night. My left solar plexus though, that was killing me. I felt like I'd been punched with a bowling ball-sized fist. Still do actually. While Jody got the painkillers for me I tried to ice it down, numb it, and just cry to get past it all. The swelling really hurt and the painkillers took time to kick in.
They eventually did though I'd estimate they're only cutting it down by about half. Overnight I dropped two more rounds on schedule and I'm hoping today goes well. I got a little chilled and woke up stiff this morning but Jody, whom I do not deserve, got our heating pad for me to help warmly loosen things up. I'm typing this now and planning to call Dr. Grasso today for any advice on stretching/working the muscles to make sure I neither hurt myself nor atrophy.
Here I am with my trademark fakey grin (tm) before I knew what was actually going to happen. I was soooo naive... but that is the last IV needle in my arm for a long time.
Tuesday, September 4, 2007
half empty, half full
This is the post that makes everyone go, "Trade ya!"
I got both my and Jody's benefits papers filled out by Dr. Lee last Friday to both protect Jody and let her take some time off when I need her and activate my short term disability benefits. I have to admit I bought it as just a little insurance against losing my paycheck if I ever got laid up so... whoddathunkit?
Well, as expected, my benefit has been approved. I'm in touch with a very nice nurse at my company's medical attache' whom carefully explained to me what I'd come to understand from reading the company benefit policies over the weekend. My short term coverage pays me my full salary for 130 days off, though holidays and my sweet 9/80 Fridays off are not excluded. I cannot take usual leave either, but I'm on disability. I can effectively double those 130 days to 260 (a full year) by working a reduced schedule of half days. Since 2-4 hours a day max is what Dr. Lee recommended in her estimation on my paperwork, that's what Lockheed wants me to do.
Now you guys might think wokring half a day would be great. Full pay for half the work. I may come around to your way of thinking, but right now it's irritating me. I want to be able to work if I feel like working, not punching the clock at lunchtime and going home for the day. To me that's just going to back me up and leave me feeling like I'm not accomplishing much of anything. I get a lot of satisfaction of out my job. I can also honestly say the job I'm at now is the best work I've ever had. Despite some of the workflow issues into and away from my desk, I really really feel like I'm making a difference and I'm not thrilled that I have to cut back because of this doggone tumor.
The truth is I could work as much as I like, but if I punch in I automatically lose half of one of those 130 disability days. And that means I'm wasting my benefit. I still have to bill the hours I work, but the policy really is written to encourage me to take the time off and put my efforts into getting well. Sigh. Logic can be so sensible sometimes.
Of course the immediate temptation is there to start making a list of things I can knock out with all the time at home but I have to chill. I actually have to plan to do nothing.
I wonder if Royal Caribbean has afternoon cruises...
I got both my and Jody's benefits papers filled out by Dr. Lee last Friday to both protect Jody and let her take some time off when I need her and activate my short term disability benefits. I have to admit I bought it as just a little insurance against losing my paycheck if I ever got laid up so... whoddathunkit?
Well, as expected, my benefit has been approved. I'm in touch with a very nice nurse at my company's medical attache' whom carefully explained to me what I'd come to understand from reading the company benefit policies over the weekend. My short term coverage pays me my full salary for 130 days off, though holidays and my sweet 9/80 Fridays off are not excluded. I cannot take usual leave either, but I'm on disability. I can effectively double those 130 days to 260 (a full year) by working a reduced schedule of half days. Since 2-4 hours a day max is what Dr. Lee recommended in her estimation on my paperwork, that's what Lockheed wants me to do.
Now you guys might think wokring half a day would be great. Full pay for half the work. I may come around to your way of thinking, but right now it's irritating me. I want to be able to work if I feel like working, not punching the clock at lunchtime and going home for the day. To me that's just going to back me up and leave me feeling like I'm not accomplishing much of anything. I get a lot of satisfaction of out my job. I can also honestly say the job I'm at now is the best work I've ever had. Despite some of the workflow issues into and away from my desk, I really really feel like I'm making a difference and I'm not thrilled that I have to cut back because of this doggone tumor.
The truth is I could work as much as I like, but if I punch in I automatically lose half of one of those 130 disability days. And that means I'm wasting my benefit. I still have to bill the hours I work, but the policy really is written to encourage me to take the time off and put my efforts into getting well. Sigh. Logic can be so sensible sometimes.
Of course the immediate temptation is there to start making a list of things I can knock out with all the time at home but I have to chill. I actually have to plan to do nothing.
I wonder if Royal Caribbean has afternoon cruises...
Saturday, September 1, 2007
waves...
Do you believe this? One of Jody's knitting pals has taken it upon herself to train and raise money for a walk next year and to do so in my name. She'd asked Jody if she could link here and I was okay with that (why not?) but little did I know. I don't know what to say! Amie, I am very touched. :')
I like her schedule of training though I'm unsure of just how to measure off a mile by foot, exactly. I guess walking a track at a school would do... I used to ride my bike that way until I accidentally ran over a lady who was jogging. True story. I had my head down and was concentrating so hard on my cadence and staying in my lane that I rode straight into the back of this poor woman who was just out there for a run. I've since learned to keep my eyes up.
We must have been on the same wavelength yesterday as I was thinking and posting about needing to raise my energy level and get on my feet. My only advice; take a bottle of water and sip it instead of chugging. And take a look over your shoulder from time to time for the crazy kid on his bike.
I like her schedule of training though I'm unsure of just how to measure off a mile by foot, exactly. I guess walking a track at a school would do... I used to ride my bike that way until I accidentally ran over a lady who was jogging. True story. I had my head down and was concentrating so hard on my cadence and staying in my lane that I rode straight into the back of this poor woman who was just out there for a run. I've since learned to keep my eyes up.
We must have been on the same wavelength yesterday as I was thinking and posting about needing to raise my energy level and get on my feet. My only advice; take a bottle of water and sip it instead of chugging. And take a look over your shoulder from time to time for the crazy kid on his bike.
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