Well, in
spite of my upbeat post over the weekend, I spent the vast majority (95%,
probably) of Saturday and Sunday sleeping. I have never, ever been that
weak or drained. It went so much beyond "tired" or
"exhausted"....I literally couldn't keep myself awake. I
decided to listen to my body and give it what it needed; thank goodness I did,
because by Tuesday, I was up and about and feeling *tons* better. Not
100%, but better.
As of today, I'm feeling really good. Much better - hard to believe it was just a week ago that I went through all of that. I'm tired (normal), but feeling really good. Mentally, I'm ready to tackle all that I have to do, and I'm confident about my CT scan at the end of the month. I'm ready for my final IV chemo on the 27th, and I'm ready and willing and able to STOKED to get back to living. A good, long stretch of normal and boring would be VERY welcome.
Dad spoke with my care team about last week's debacle. After reviewing the notes and data, they are fairly certain that I reacted to the Irinotecan, which I've been on since March (I lost count of how many rounds....we'll just say I've been on it for 6 months). So, the next round on Sept 27th will look like this...
7am - arrive at CTCA. Port access, lab draws, and CT prep
8am-ish - CT scan
10am - Massage with Pat, genius with tuning forks
12:30 - med/onc appointment (this is where we will discuss the reaction, get results, etc....very exciting!)
2:30 - infusion, with just pre-meds and Erbitux
Now, assuming I'm awake at the end of this round of chemo, and when we get the good news from the CT Scan (because it will be good), I will ring the bell in infusion. What's this bell, you might ask? Well, in both infusion and in the radiation department, CTCA has set up a beautiful brass bell. When you complete your last treatment, you get to ring the bell in celebration. Oh, hells yes - I'll be ringing that damn bell.
So, lots to look forward to. I've started my visualization board for remission - Walt Disney World and Nashville pictures have been printed. Need to work on others, but my computer and my printer don't want to work together right now.....stupid technology. :)
Oh - some of you have asked how I did on the Marinol this time....well, I remember everything, so I consider that a HUGE plus. I will say that, while I did have some nausea, I was able to keep it under control with regular Marinol (at half-dose) three times a day until Tuesday. I finished the Zofran on Monday, so that's a pretty good improvement. Yesterday, I only had to take it the Marinol in the morning, and haven't had to take anything since then. Admittedly, I do see a decrease in my appetite when I'm not taking the Marinol, but that's ok. I'm eating healthy and making smart(ish) choices.
Oh - fun recurring side effect this time? Mouth sores. I could really do without those, to be honest. I'm not sure if they are a result of the chemo (and increased sensitivity) or a reaction to all the anti-reaction meds they gave me. Will ask when I go in; for now, I've learned to work around them. They aren't awful, but they still aren't fun. Makes planning dinners very boring...
Overall, I feel like I reacted and recovered as well as could be expected to what went down last week. Listening to my body and giving it time to recover and heal made, in my opinion, all the difference. I've found that the meditation has helped me, and I will absolutely recommend it to anyone.
I had a conversation with my brother in Sweden today, and I told him that I feel like I'm reacting to the chemo this time better than I did four years ago at this same stage (ending IV chemo). He pointed out that I'm on different drugs, which is fair. But, I just feel like emotionally, I'm in a much better state, and that helps me handle what my body is going through better. Odd, isn't it, being that back then, I was stage 3 and curable. Now, I'm stage 4, and cure isn't something folks like to talk about with colon cancer at this stage. But, I'm more at peace with what's happening, and I really do feel like that's enabling my body to, well, heal.
We really are amazing creatures, aren't we? Think about what happens in your body daily, and how it heals itself. Pretty cool. Please don't take your body for granted; you never know what's going on inside, for sure, but taking care of that machine we've been given and making sure that you give it what it needs will allow you the peace to know that you've done what you can to keep it running well, for a long time.
On that unintended soapbox comment, I'll step down and sign off. More soon; got an exciting phone call today that, if it pans out, could be really cool. Will let you know.
As of today, I'm feeling really good. Much better - hard to believe it was just a week ago that I went through all of that. I'm tired (normal), but feeling really good. Mentally, I'm ready to tackle all that I have to do, and I'm confident about my CT scan at the end of the month. I'm ready for my final IV chemo on the 27th, and I'm ready and willing and able to STOKED to get back to living. A good, long stretch of normal and boring would be VERY welcome.
Dad spoke with my care team about last week's debacle. After reviewing the notes and data, they are fairly certain that I reacted to the Irinotecan, which I've been on since March (I lost count of how many rounds....we'll just say I've been on it for 6 months). So, the next round on Sept 27th will look like this...
7am - arrive at CTCA. Port access, lab draws, and CT prep
8am-ish - CT scan
10am - Massage with Pat, genius with tuning forks
12:30 - med/onc appointment (this is where we will discuss the reaction, get results, etc....very exciting!)
2:30 - infusion, with just pre-meds and Erbitux
Now, assuming I'm awake at the end of this round of chemo, and when we get the good news from the CT Scan (because it will be good), I will ring the bell in infusion. What's this bell, you might ask? Well, in both infusion and in the radiation department, CTCA has set up a beautiful brass bell. When you complete your last treatment, you get to ring the bell in celebration. Oh, hells yes - I'll be ringing that damn bell.
So, lots to look forward to. I've started my visualization board for remission - Walt Disney World and Nashville pictures have been printed. Need to work on others, but my computer and my printer don't want to work together right now.....stupid technology. :)
Oh - some of you have asked how I did on the Marinol this time....well, I remember everything, so I consider that a HUGE plus. I will say that, while I did have some nausea, I was able to keep it under control with regular Marinol (at half-dose) three times a day until Tuesday. I finished the Zofran on Monday, so that's a pretty good improvement. Yesterday, I only had to take it the Marinol in the morning, and haven't had to take anything since then. Admittedly, I do see a decrease in my appetite when I'm not taking the Marinol, but that's ok. I'm eating healthy and making smart(ish) choices.
Oh - fun recurring side effect this time? Mouth sores. I could really do without those, to be honest. I'm not sure if they are a result of the chemo (and increased sensitivity) or a reaction to all the anti-reaction meds they gave me. Will ask when I go in; for now, I've learned to work around them. They aren't awful, but they still aren't fun. Makes planning dinners very boring...
Overall, I feel like I reacted and recovered as well as could be expected to what went down last week. Listening to my body and giving it time to recover and heal made, in my opinion, all the difference. I've found that the meditation has helped me, and I will absolutely recommend it to anyone.
I had a conversation with my brother in Sweden today, and I told him that I feel like I'm reacting to the chemo this time better than I did four years ago at this same stage (ending IV chemo). He pointed out that I'm on different drugs, which is fair. But, I just feel like emotionally, I'm in a much better state, and that helps me handle what my body is going through better. Odd, isn't it, being that back then, I was stage 3 and curable. Now, I'm stage 4, and cure isn't something folks like to talk about with colon cancer at this stage. But, I'm more at peace with what's happening, and I really do feel like that's enabling my body to, well, heal.
We really are amazing creatures, aren't we? Think about what happens in your body daily, and how it heals itself. Pretty cool. Please don't take your body for granted; you never know what's going on inside, for sure, but taking care of that machine we've been given and making sure that you give it what it needs will allow you the peace to know that you've done what you can to keep it running well, for a long time.
On that unintended soapbox comment, I'll step down and sign off. More soon; got an exciting phone call today that, if it pans out, could be really cool. Will let you know.
Comments:
Carol
Pack Urban said...
Wonderful
post!!
September
13, 2012 at 11:19 AM
mouth
sores were the worst for Josh, too..... glad to hear you're hanging in there.
September
13, 2012 at 7:30 PM
I
got my first mouth sores this round too. They aren't fun. I think it was
because I hadn't had them before and sort of slacked off on the salt rinses.
I am glad you are doing well. When is your next CAT scan? I think mine will be the second week in October.
I am glad you are doing well. When is your next CAT scan? I think mine will be the second week in October.
September
15, 2012 at 7:50 PM
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