Yesterday's chemo was a bit anticlimactic. In the end the doctor decided not to administer the infusion, at least this time. While it's nice to not have to worry about those side effects I am a little concerned that my limited options are growing more limited. I'm still taking the chemo pills though so it's not like I have no protection.
Otherwise I'm feeling ok today (so far anyway). A little better than the day before which was better than the day before that...
Saturday, July 30, 2011
Friday, July 29, 2011
three weeks later
Hello. Today is the next dose of the new chemo. Given how poorly it went last time, I am curious to hear what the doctor has in mind to correct the issue. Extra Benadryl to start? Slower drip so the infusion is more diluted? Something entirely new? I'll find out in a bit.
The side effects that were the most troublesome had to be the cold sensitivity and the daily nausea and vomiting while I was taking the pill version of chemo (two of the last three weeks). The last week has been better though I am still very tired A LOT and occasionally nauseous. I was told the cold sensitivity lasts around 72 hours. My experience with it was a little different - it was really bad for closer to 5 or 6 days and even today there's a mild amount of discomfort when I reach for ice cubes. Not too bad but it makes me sad that the cycle begins again today because as I have mentioned before, I really love ice cubes in the summer!
In other news, most of you already know that Dave is officially out of work now. The last day for most of the corporate employees was to have been today but they gave most people the day off with pay so he's done a day early. Yes this is a modestly scary thing to have him out of work (and really sad that Borders is all but a memory) but the truth is it's good timing as far as being my caregiver goes. Not that there had been an issue while he was working since he was able to leave basically anytime I needed him (his superiors were very understanding about our situation) and we have many friends to rely on as well but as my health declines there will be more and more situations where I want only him to be there. Almost a little like how a little kid wants their mommy when they're sick. And he really deserves a break, to take more than a week off for vacation. I have had a couple of times in my life where I was in a position to take a few months off between jobs to recharge, rethink and just plain relax and let me tell you, it's wonderful if you can swing it. Since he's getting 12 weeks of severance we have some breathing room which is great.
We began scaling down a while ago (this mostly amounts to going to the grocery store Meier as opposed to Hiller's - think Walmart compared to Whole Foods) as far as spending goes so even though we'll tighten the belt a little more for right now, we've been living pretty simply anyway. I think getting rid of so much stuff at the yard sale helped with that "clear the clutter" mentality and reinforces the fact that we don't really need much to get by and still live reasonably well and within our means. It's not like we're dumpster diving or switching to bottom shelf booze (well, I'm still not drinking but no reason Dave should have to drink martinis made from rubbing alcohol).
In "news that makes us happier than you could possibly know", last night we had a dinner that was composed of pasta tossed with pesto made from our very own basil and a big bowl of tomatoes from the garden - the first of the year! Nothing like a garden fresh tomato and it looks like we're going to have a bumper crop compared to the last few years. For whatever reason, we just weren't having success with tomatoes but this year has changed all that. And normally we are very generous about sharing our garden bounty but I think we'll probably be eating every last one of those tomatoes. We will have plenty of squash pretty soon for those who are interested. :)
Well, off to chemo - wish me well!
The side effects that were the most troublesome had to be the cold sensitivity and the daily nausea and vomiting while I was taking the pill version of chemo (two of the last three weeks). The last week has been better though I am still very tired A LOT and occasionally nauseous. I was told the cold sensitivity lasts around 72 hours. My experience with it was a little different - it was really bad for closer to 5 or 6 days and even today there's a mild amount of discomfort when I reach for ice cubes. Not too bad but it makes me sad that the cycle begins again today because as I have mentioned before, I really love ice cubes in the summer!
In other news, most of you already know that Dave is officially out of work now. The last day for most of the corporate employees was to have been today but they gave most people the day off with pay so he's done a day early. Yes this is a modestly scary thing to have him out of work (and really sad that Borders is all but a memory) but the truth is it's good timing as far as being my caregiver goes. Not that there had been an issue while he was working since he was able to leave basically anytime I needed him (his superiors were very understanding about our situation) and we have many friends to rely on as well but as my health declines there will be more and more situations where I want only him to be there. Almost a little like how a little kid wants their mommy when they're sick. And he really deserves a break, to take more than a week off for vacation. I have had a couple of times in my life where I was in a position to take a few months off between jobs to recharge, rethink and just plain relax and let me tell you, it's wonderful if you can swing it. Since he's getting 12 weeks of severance we have some breathing room which is great.
We began scaling down a while ago (this mostly amounts to going to the grocery store Meier as opposed to Hiller's - think Walmart compared to Whole Foods) as far as spending goes so even though we'll tighten the belt a little more for right now, we've been living pretty simply anyway. I think getting rid of so much stuff at the yard sale helped with that "clear the clutter" mentality and reinforces the fact that we don't really need much to get by and still live reasonably well and within our means. It's not like we're dumpster diving or switching to bottom shelf booze (well, I'm still not drinking but no reason Dave should have to drink martinis made from rubbing alcohol).
In "news that makes us happier than you could possibly know", last night we had a dinner that was composed of pasta tossed with pesto made from our very own basil and a big bowl of tomatoes from the garden - the first of the year! Nothing like a garden fresh tomato and it looks like we're going to have a bumper crop compared to the last few years. For whatever reason, we just weren't having success with tomatoes but this year has changed all that. And normally we are very generous about sharing our garden bounty but I think we'll probably be eating every last one of those tomatoes. We will have plenty of squash pretty soon for those who are interested. :)
Well, off to chemo - wish me well!
Saturday, July 9, 2011
new chemo? not so great.
Yesterday I began my new chemo routine with the pills at breakfast and dinner as well as my first infusion with oxiliplatin. The infusion begins with 30 minutes of calcium and magnesium supplements (delivered via IV) followed by 2 hours of oxiliplatin and then another 30 of calcium/magnesium. I was about 5 minutes from being disconnected and sent home when I became suddenly and violently ill. Nurses, techs and PAs gathered round. They pulled the privacy curtains and hooked me up to a heart monitor as well as a blood pressure cuff and some oxygen up the nose for good measure. After I puked a few times and they injected 50 mg of Benadryl into my IV I started to fell a little better. It took a while to get back to breathing normally but eventually it passed and I was sent on my way. What happens now is unknown. My doctor (who was not present during the infusion) knows what happened and so will be following up with a new game plan. That may mean pre-dosing with Benadryl or it may mean switching to something else entirely. Not sure yet...
The other thing that's a bummer is the extreme sensitivity to cold. I was warned that even putting my arm in the fridge would be painful and while it's not quite that bad it's bad enough that touching something in the fridge feels like getting instant frostbite. Forget about drinking anything colder than room temp (my stomach seizes up and I puke) which really sucks because I have been drinking iced tea and iced coffee like crazy this summer. Luckily, this side effect should be gone within about 72 hours of infusion so if I stay on this routine it will mean three or so days of wearing socks (because the bathroom tile is way too cold for bare feet) every three weeks. I don't think I could bear the prospect of this side effect being permanent as it means quite a drop in my quality of life so I try to stay focused on the fact that I can have cold food and beverages again soon.
There was one bright spot over these past few days. We had a lovely visit with Dave's sister Debbie and her gentleman friend, Dana. Well, I slept through quite a bit of it but did get to spend some time with them.
Thanks for reading - take care!
The other thing that's a bummer is the extreme sensitivity to cold. I was warned that even putting my arm in the fridge would be painful and while it's not quite that bad it's bad enough that touching something in the fridge feels like getting instant frostbite. Forget about drinking anything colder than room temp (my stomach seizes up and I puke) which really sucks because I have been drinking iced tea and iced coffee like crazy this summer. Luckily, this side effect should be gone within about 72 hours of infusion so if I stay on this routine it will mean three or so days of wearing socks (because the bathroom tile is way too cold for bare feet) every three weeks. I don't think I could bear the prospect of this side effect being permanent as it means quite a drop in my quality of life so I try to stay focused on the fact that I can have cold food and beverages again soon.
There was one bright spot over these past few days. We had a lovely visit with Dave's sister Debbie and her gentleman friend, Dana. Well, I slept through quite a bit of it but did get to spend some time with them.
Thanks for reading - take care!
Saturday, July 2, 2011
new chemo routine
Hello. I know it's been a while (funny how most posts start out with an apology for the long time between posts. Why should I feel the need to apologize for that?) but there hasn't been a lot to say with regard to my health; I have good days and I have bad days. Thankfully, we're still at a point where the good outnumber the bad.
We've also just been busy with the usual: yard & garden, visitors, birthdays, dogs. Good stuff. July is looking to be pretty busy at this point as well.
There have been some big developments on the treatment front. My doctor left for another local hospital and I met my new oncologist yesterday - I really like the new one! The old doc was fine (very professional and knowledgeable but somewhat robotic) but I felt an instant rapport with Dr. Chen (new) and she has a much better communication style. Anyhow, the true test is how good is she? For her part, she took me on at a crossroads; the old routine was predictably losing effectiveness with an accumulation of side effects and, new doctor or not, it was time to switch it up.
The new chemo routine involves two drugs, just like the previous routine, where one is more mild and one is more toxic. The more mild drug, Xeloda a/k/a capecitabine, is in pill form. I take four with breakfast and four with dinner (this brings my daily pill count to 30) every day for two weeks and then take nothing for one week. Every three weeks I will be treated with Oxaliplatin, the more harsh drug. This is given via IV (my power port) and requires a dose of calcium and magnesium (also through IV) so the infusion time is back up to three + hours each session. So each treatment day, when you incorporate blood draw and doctor visit, is again an almost 8 hour day. Kind of like going to work except I can nap (and they have warm blankets!). And I only have to go once every three weeks. So it's really more like the job I wish I had. :)
Of course, with each new treatment comes diminishing returns. The doctor is hopeful that the new combo will keep me going for at least several more months but we started with the best treatment for my situation and we can only go down from there. New possible side effects include: mouth sores, hand-foot syndrome (google it if you're curious), heartburn, nausea (surprise!), diarrhea, rash, clumsiness/unsteadiness (worse than now?!), confusion (what does that even mean?), dry cough, fever, chills, body ache, numbness in extremities, seizure or tremors, swelling, unusual bleeding or bruising, jaw pain, joint pain, courtney payne (just checking to see if you're still reading) and, the best - extreme sensitivity to cold. Extreme like eating ice cream will cause excruciating pain. I really hope I don't get that one! Thankfully there's no mention of my least favorite side effect ever (it's from using the fat substitute Olestra) - anal leakage. Now are you still reading? :)
We're also coming up on the one year anniversary of my diagnosis. Statistically speaking, most people with stage 4 die within a year of diagnosis. I have relative good health (other than a little cancer) and youth on my side. And, of course, there are people who last longer than one year so it's not like some miracle but I still can't help but feel like everything after August is just bonus time.
Take care!
We've also just been busy with the usual: yard & garden, visitors, birthdays, dogs. Good stuff. July is looking to be pretty busy at this point as well.
There have been some big developments on the treatment front. My doctor left for another local hospital and I met my new oncologist yesterday - I really like the new one! The old doc was fine (very professional and knowledgeable but somewhat robotic) but I felt an instant rapport with Dr. Chen (new) and she has a much better communication style. Anyhow, the true test is how good is she? For her part, she took me on at a crossroads; the old routine was predictably losing effectiveness with an accumulation of side effects and, new doctor or not, it was time to switch it up.
The new chemo routine involves two drugs, just like the previous routine, where one is more mild and one is more toxic. The more mild drug, Xeloda a/k/a capecitabine, is in pill form. I take four with breakfast and four with dinner (this brings my daily pill count to 30) every day for two weeks and then take nothing for one week. Every three weeks I will be treated with Oxaliplatin, the more harsh drug. This is given via IV (my power port) and requires a dose of calcium and magnesium (also through IV) so the infusion time is back up to three + hours each session. So each treatment day, when you incorporate blood draw and doctor visit, is again an almost 8 hour day. Kind of like going to work except I can nap (and they have warm blankets!). And I only have to go once every three weeks. So it's really more like the job I wish I had. :)
Of course, with each new treatment comes diminishing returns. The doctor is hopeful that the new combo will keep me going for at least several more months but we started with the best treatment for my situation and we can only go down from there. New possible side effects include: mouth sores, hand-foot syndrome (google it if you're curious), heartburn, nausea (surprise!), diarrhea, rash, clumsiness/unsteadiness (worse than now?!), confusion (what does that even mean?), dry cough, fever, chills, body ache, numbness in extremities, seizure or tremors, swelling, unusual bleeding or bruising, jaw pain, joint pain, courtney payne (just checking to see if you're still reading) and, the best - extreme sensitivity to cold. Extreme like eating ice cream will cause excruciating pain. I really hope I don't get that one! Thankfully there's no mention of my least favorite side effect ever (it's from using the fat substitute Olestra) - anal leakage. Now are you still reading? :)
We're also coming up on the one year anniversary of my diagnosis. Statistically speaking, most people with stage 4 die within a year of diagnosis. I have relative good health (other than a little cancer) and youth on my side. And, of course, there are people who last longer than one year so it's not like some miracle but I still can't help but feel like everything after August is just bonus time.
Take care!
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