Saturday, October 26, 2013
....And Home!
Just a quick update that I'm back at home and thrilled to be here. As much as I am grateful for the care and medicine I received at the hospital (and I am grateful; I clearly really, really needed it) it is much better to be home. I'm not 100% yet or anything, but Percocet is keeping my mouth pain in check for the most part, and seeing the kids again has been awesome. Here's hoping we can avoid a repeat!
Thursday, October 24, 2013
Today's News
Plans have been slightly revised today - we're going to take another week off from chemo to let my white blood cell count go up, and to let my mouth finish healing.
I was initially worried about what that meant for my overall chances of fighting cancer, but Dr. Kaplan took the time to explain to me (one of many reasons I love him) that the research shows that the important part is that we do the 12 weekly doses of Taxol. For the 4 bi-weekly doses of A/C that I'm doing now, there's only one larger study that shows a very small improvement in doing it bi-weekly vs. every three weeks. Either way, as he said, if I try to do A/C again on Monday I will just end up back in the hospital. And much as I'm enjoying my room with a view and the lovely nurses, I'd like to avoid being here another month.
In other news, I woke up hungry for the first time in a few days today and ate some breakfast without feeling nauseous. And with the fog outside and my stack of books and cup of tea, it actually feels quite cozy.
I was initially worried about what that meant for my overall chances of fighting cancer, but Dr. Kaplan took the time to explain to me (one of many reasons I love him) that the research shows that the important part is that we do the 12 weekly doses of Taxol. For the 4 bi-weekly doses of A/C that I'm doing now, there's only one larger study that shows a very small improvement in doing it bi-weekly vs. every three weeks. Either way, as he said, if I try to do A/C again on Monday I will just end up back in the hospital. And much as I'm enjoying my room with a view and the lovely nurses, I'd like to avoid being here another month.
In other news, I woke up hungry for the first time in a few days today and ate some breakfast without feeling nauseous. And with the fog outside and my stack of books and cup of tea, it actually feels quite cozy.
Wednesday, October 23, 2013
Good News
I'm choosing to look at this as good news - I'm in the hospital now as of Monday night and will probably be here for the rest of the week.
As you may have noticed in my past couple posts, I was feeling pretty out of control. The whole "cancer and control freaks don't mix" had never been more apparent. After my first dose of chemo, it was hard, but by week two I was feeling better and was able to play with the kids, take them to the symphony, and work full time. I felt normal. So I expected the same pattern: week1 - suck; week 2- ok.
Instead, the sores on my mouth were so painful by Monday that I could barely eat. I was way more tired than I had been during my "off week" before, whether from not sleeping well, or just managing constant pain. I'd been prescribed 6 different mouthwashes, none of which seemed to do anything, many of which were supposed to help immediately but would work for 10 minutes at best, and others which were supposed to help long term but I didn't think I could make it much longer. Finally Monday morning I talked to my oncologist and he prescribed YAMW (yet another mouthwash) and told me to take some of my leftover Vicodin from surgery. I hate taking narcotics, but I was desperate to have anything that could take the edge off the pain. So I got home and ran around the house frantically but couldn't find it. Yikes. My mother in law found me crying but I wouldn't let her interrupt Jeff because he was on an important phone call in his office - luckily he opened the door so she was able to ask him and he found some for me. Okay. Except that I took it, and not only did it make just the tiniest dent in the pain, it also started making me sick. So by Monday night I was throwing up, getting chills, and oh yeah, still in unbearable pain.
In my head, I felt my choices were 17 more weeks of this OR having my chemo drugs toned down and then ending up getting cancer again because we wouldn't be "curing" me.
And this is when getting admitted to the ER at 2am is a good thing. We drove to Swedish, it turns out I had a fever (from an unidentified infection; we chemo patients are susceptible to that sort of thing) and a really really low white blood cell count (i.e. no immune system). But it also turns out that morphine + Tylenol through an IV can work wonders on pain.
And so two days later, I'm still here and feeling a lot more under control. My mouth sores aren't gone, but they are under pain control and feel much more manageable. I'm still not eating much (although the nutritionist did send up a chocolate high-protein shake which I managed to get down; my nurse Jean was very proud of me). Best of all, my white blood cell count, which is still way too low, has at least started rising, and my fever seems to be mostly better as of this afternoon.
Most importantly, Dr. Kaplan told me that I am having a reaction to chemo that's a 12 on a scale of 1-10. But what that also means is that the cancer is really susceptible to chemo. So he's confident that he can lower the dosage for the next two rounds without effecting the overall outcome, but while preventing me from losing my marbles again. I'm going to be sticking around here till at least Friday so I will be healthy enough for my next round of chemo, and hopefully by then:
As you may have noticed in my past couple posts, I was feeling pretty out of control. The whole "cancer and control freaks don't mix" had never been more apparent. After my first dose of chemo, it was hard, but by week two I was feeling better and was able to play with the kids, take them to the symphony, and work full time. I felt normal. So I expected the same pattern: week1 - suck; week 2- ok.
Instead, the sores on my mouth were so painful by Monday that I could barely eat. I was way more tired than I had been during my "off week" before, whether from not sleeping well, or just managing constant pain. I'd been prescribed 6 different mouthwashes, none of which seemed to do anything, many of which were supposed to help immediately but would work for 10 minutes at best, and others which were supposed to help long term but I didn't think I could make it much longer. Finally Monday morning I talked to my oncologist and he prescribed YAMW (yet another mouthwash) and told me to take some of my leftover Vicodin from surgery. I hate taking narcotics, but I was desperate to have anything that could take the edge off the pain. So I got home and ran around the house frantically but couldn't find it. Yikes. My mother in law found me crying but I wouldn't let her interrupt Jeff because he was on an important phone call in his office - luckily he opened the door so she was able to ask him and he found some for me. Okay. Except that I took it, and not only did it make just the tiniest dent in the pain, it also started making me sick. So by Monday night I was throwing up, getting chills, and oh yeah, still in unbearable pain.
In my head, I felt my choices were 17 more weeks of this OR having my chemo drugs toned down and then ending up getting cancer again because we wouldn't be "curing" me.
And this is when getting admitted to the ER at 2am is a good thing. We drove to Swedish, it turns out I had a fever (from an unidentified infection; we chemo patients are susceptible to that sort of thing) and a really really low white blood cell count (i.e. no immune system). But it also turns out that morphine + Tylenol through an IV can work wonders on pain.
And so two days later, I'm still here and feeling a lot more under control. My mouth sores aren't gone, but they are under pain control and feel much more manageable. I'm still not eating much (although the nutritionist did send up a chocolate high-protein shake which I managed to get down; my nurse Jean was very proud of me). Best of all, my white blood cell count, which is still way too low, has at least started rising, and my fever seems to be mostly better as of this afternoon.
Most importantly, Dr. Kaplan told me that I am having a reaction to chemo that's a 12 on a scale of 1-10. But what that also means is that the cancer is really susceptible to chemo. So he's confident that he can lower the dosage for the next two rounds without effecting the overall outcome, but while preventing me from losing my marbles again. I'm going to be sticking around here till at least Friday so I will be healthy enough for my next round of chemo, and hopefully by then:
- my mouth will be mostly healed
- I'll have ways of doing pain management at home too, and
- I can get back to my bad-ass bald look, which works way, way better when I'm not pairing it with a hospital gown
Monday, October 21, 2013
Ugh
One of the doctors I talked to before starting this whole cancer treatment thing told me to avoid cancer blogs, because the people who blog are the ones who are having a hard time. Well I think it's true, and we're in for a depressing series of posts; sorry folks. Feel free to skip ahead about 17 weeks if you can.
I just had my first actual throwing up incident since starting chemo - and it was from the Vicodin I'm using to try to mask the intense pain of my mouth sores. I've never had issues with Vicodin in the past, not that I've taken it all that often, but apparently chemo drugs + side effect drugs + the soup I had for lunch did not make a good combination. Ugh.
WTF. It would all be worth it if the Vicodin actually stopped the pain, but it doesn't even do that. I think I may lose my mind. If all future blog posts sound like ramblings of a crazy person, I'm going to blame it on my unbelievably sore tongue.
Okay, back to trying to distract myself with Orange is the New Black. I guess I should be grateful I'm not in prison?
I just had my first actual throwing up incident since starting chemo - and it was from the Vicodin I'm using to try to mask the intense pain of my mouth sores. I've never had issues with Vicodin in the past, not that I've taken it all that often, but apparently chemo drugs + side effect drugs + the soup I had for lunch did not make a good combination. Ugh.
WTF. It would all be worth it if the Vicodin actually stopped the pain, but it doesn't even do that. I think I may lose my mind. If all future blog posts sound like ramblings of a crazy person, I'm going to blame it on my unbelievably sore tongue.
Okay, back to trying to distract myself with Orange is the New Black. I guess I should be grateful I'm not in prison?
Saturday, October 19, 2013
Least Favorite Side Effect
I have a beautifully shaped head, thank goodness. I found this out today when I went to get all my hair shaved off of course; it was starting to fall out and stressing me out to wonder when it would go in clumps, so I bit the bullet and got rid of it. Turns out that while it's not awesome, it's okay.
Less awesome is the fact that my tongue feels like it's been burned and bitten to within an inch of its life; one of the delightful side-effects of chemo for some lucky people. I will (for now) name this my least favorite thing. There's some kind of special mouthwash my doctor prescribed me last week, but it turns out it contains an ingredient I'm allergic to (good thing the pharmacist figured that out before giving it to me, I guess). Instead I've been stuck with salt-water rinses which aren't doing much. Consider me annoyed.
It's a "fuck cancer" kinda day.
Hopefully I'll figure something out or this is going to be a really, really long 17 more weeks of chemo.
Less awesome is the fact that my tongue feels like it's been burned and bitten to within an inch of its life; one of the delightful side-effects of chemo for some lucky people. I will (for now) name this my least favorite thing. There's some kind of special mouthwash my doctor prescribed me last week, but it turns out it contains an ingredient I'm allergic to (good thing the pharmacist figured that out before giving it to me, I guess). Instead I've been stuck with salt-water rinses which aren't doing much. Consider me annoyed.
It's a "fuck cancer" kinda day.
Hopefully I'll figure something out or this is going to be a really, really long 17 more weeks of chemo.
Friday, October 18, 2013
A Question of Etiquette
My dilemma last weekend: what do you bring the guy who's volunteered to make you special brownies to help with your nausea and won't accept payment?
So I was pretty nauseous last AC chemo round, and I know I can get a medical marijuana license but instead I wanted to see if it would actually make an impact first, so a friend of a friend hooked me up. He was super sweet, told me he had tongue cancer when he was in his 20's, looked up info on dosages for me, and baked really delicious brownies. But he said it wasn't his style to let me pay for something like that so aside from promising to "pay it forward" which I will do, I wanted to get him something. Some suggestions from friends included:
So I was pretty nauseous last AC chemo round, and I know I can get a medical marijuana license but instead I wanted to see if it would actually make an impact first, so a friend of a friend hooked me up. He was super sweet, told me he had tongue cancer when he was in his 20's, looked up info on dosages for me, and baked really delicious brownies. But he said it wasn't his style to let me pay for something like that so aside from promising to "pay it forward" which I will do, I wanted to get him something. Some suggestions from friends included:
- Munchies
- Fancy Brownie Mix
- Mellow music
- Something football related (he's a boy so I guess this is the default answer)
Thursday, October 17, 2013
Morning Regimen
It's still a little disconcerting that I have to fill my body with chemicals, and then spend the next two weeks filling myself with other chemicals to counteract the side-effects of all the crap I just ingested. For example, here is a partial set of all the stuff I had to take this morning.
Hopefully that makes the whole chemo brain moment (per earlier blog post) make more sense!
Hopefully that makes the whole chemo brain moment (per earlier blog post) make more sense!
Wednesday, October 16, 2013
My First Chemo Brain Moment, Or, The Time I Found Out I Would Make an Awful Bulimic
One of the side-effects of chemotherapy can be what's called "chemo brain" - from what I gather, it's a loss of short-term memory and inability to think quickly on your feet. It can be a major issue or minor one, and can last just while you're having chemo, or months, years, or forever afterwards.
For the most part, I've been okay thankfully. I'm definitely tired and a little distracted, but nothing major. Then the other day I had my first total chemo brain moment. It was last Tuesday, and I was feeling okay enough to plan to go into work that day at least for a while.
In the morning, I take a bunch of pills, but the regimen changes over the course of the treatment (so it's different on day 1, 2, 10, etc.) I'd gotten up, and Ethan was hanging out in bed with me, and I reached over to grab my ibuprofen, which is in a prescription bottle because after my surgery was over I'd refilled the prescription-grade ibuprofen with the regular over the counter stuff. I took three pills, swallowed them, said something to Ethan, then looked back at my nightstand, and somehow became convinced that I'd taken the wrong medicine.
At first I was sure I'd taken some anti-nausea medicine, of which I'm supposed to take 3 pills over the course of 24 hours, so I freaked out. Now I should point out that the ibuprofen is in a bottle that is tall, skinny, orange, and has a white lid. The anti-nausea medicine, on the other hand, is in a bottle that is squat and white with a blue lid. There's no way I confused them. But that didn't stop me from running downstairs to find Jeff and scream that I needed to make myself throw up but didn't know how. So he told me, and I proceeded to try to throw up for maybe 5 minutes. I failed miserably.
Then I went back upstairs to try to see if maybe this had been a horrible mistake, and instead concluded that rather than take 3 anti-nausea pills, I had taken 3 sleeping pills instead (these at least were in a similar container, but they are tiny compared to the ibuprofen so it's pretty impossible that I had mistaken one for the other). At which point I started screaming, "I have to give an fucking exec presentation in an hour and a half and I just fucking took 3 sleeping pills!", ran downstairs, and tried to throw up again. And failed.
Why all the running up and down? Why all the swearing? I promise I am normally quite calm in a crisis. But I blame I Chemo Brain (tm).
Anyway, the story ends just fine - I went back upstairs, and conveniently the lid to the ibuprofen has a timer on it that tells you how long its been since the bottle was opened. I looked more carefully since I'd concluded I was just going to have to spend the next 24 hours in bed and noticed that the timer said 7 minutes. So it turned out I'd taken the ibuprofen after all.
And the presentation went just fine. The End.
Looking forward to another installment of Chemo Brain? Don't worry, I'm sure I'll have more to share.
For the most part, I've been okay thankfully. I'm definitely tired and a little distracted, but nothing major. Then the other day I had my first total chemo brain moment. It was last Tuesday, and I was feeling okay enough to plan to go into work that day at least for a while.
In the morning, I take a bunch of pills, but the regimen changes over the course of the treatment (so it's different on day 1, 2, 10, etc.) I'd gotten up, and Ethan was hanging out in bed with me, and I reached over to grab my ibuprofen, which is in a prescription bottle because after my surgery was over I'd refilled the prescription-grade ibuprofen with the regular over the counter stuff. I took three pills, swallowed them, said something to Ethan, then looked back at my nightstand, and somehow became convinced that I'd taken the wrong medicine.
At first I was sure I'd taken some anti-nausea medicine, of which I'm supposed to take 3 pills over the course of 24 hours, so I freaked out. Now I should point out that the ibuprofen is in a bottle that is tall, skinny, orange, and has a white lid. The anti-nausea medicine, on the other hand, is in a bottle that is squat and white with a blue lid. There's no way I confused them. But that didn't stop me from running downstairs to find Jeff and scream that I needed to make myself throw up but didn't know how. So he told me, and I proceeded to try to throw up for maybe 5 minutes. I failed miserably.
Then I went back upstairs to try to see if maybe this had been a horrible mistake, and instead concluded that rather than take 3 anti-nausea pills, I had taken 3 sleeping pills instead (these at least were in a similar container, but they are tiny compared to the ibuprofen so it's pretty impossible that I had mistaken one for the other). At which point I started screaming, "I have to give an fucking exec presentation in an hour and a half and I just fucking took 3 sleeping pills!", ran downstairs, and tried to throw up again. And failed.
Why all the running up and down? Why all the swearing? I promise I am normally quite calm in a crisis. But I blame I Chemo Brain (tm).
Anyway, the story ends just fine - I went back upstairs, and conveniently the lid to the ibuprofen has a timer on it that tells you how long its been since the bottle was opened. I looked more carefully since I'd concluded I was just going to have to spend the next 24 hours in bed and noticed that the timer said 7 minutes. So it turned out I'd taken the ibuprofen after all.
And the presentation went just fine. The End.
Looking forward to another installment of Chemo Brain? Don't worry, I'm sure I'll have more to share.
Tuesday, October 15, 2013
In Which I Look Like Sandra Bullock, Supposedly
I'd been stressing about my hair for a while - it's supposed to fall out this week and I couldn't handle the drama, so I figured I'd whack most of it off and take advantage of the fact that I can try a haircut out, risk free, for a couple weeks. Turns out I kind of like it!
However, the comment I get most frequently is that I look like Sandra Bullock in Gravity. Unfortunately I haven't seen the movie, but from what I can tell she spends the whole thing wearing a ginormous astronaut helmet, so I'm a little confused. Thoughts?
AC Chemo Week 2 Summary
Well, I made it through last week and so relieved it was easier than the one before! Short version:
Mon - Tired, but made it to work a few hours
Tues - Less tired, but made it to work a few hours
Wed - Less tired, made it to work more hours
Thurs - 80% capacity
Fri - 90% capacity, and even picked the kids up myself for the first time since surgery! Woo-hoo!
Unfortunately everything else in life outside my health decided to go cattywampus. But at least I was able to use that word to describe it, which I have never managed to do before. So there's a silver lining.
Mon - Tired, but made it to work a few hours
Tues - Less tired, but made it to work a few hours
Wed - Less tired, made it to work more hours
Thurs - 80% capacity
Fri - 90% capacity, and even picked the kids up myself for the first time since surgery! Woo-hoo!
Unfortunately everything else in life outside my health decided to go cattywampus. But at least I was able to use that word to describe it, which I have never managed to do before. So there's a silver lining.
Thursday, October 3, 2013
AC Chemo Day 4
I was confused about how I was supposed to count - was the day you get chemo day 0 or day 1 (turns out it's day 1)? Because days 3-5 are supposed to be the worst and yesterday was not horrible.
But then I hit day 4! Yay.
On the plus side, I do not feel like a truck has run me over. But I do feel tired. Tireder than yesterday, and less interested in forcing myself outside for a nice walk or even up to get a shower. And I definitely am more nauseous. Unfortunately the thing that best helps my nausea is eating, but I have no desire to get through this cancer thing and then find myself having to lose 300lbs, so I'm going to have to find another way. Plus obesity is a risk factor for cancer, so can't have that.
What's helping so far today.
But then I hit day 4! Yay.
On the plus side, I do not feel like a truck has run me over. But I do feel tired. Tireder than yesterday, and less interested in forcing myself outside for a nice walk or even up to get a shower. And I definitely am more nauseous. Unfortunately the thing that best helps my nausea is eating, but I have no desire to get through this cancer thing and then find myself having to lose 300lbs, so I'm going to have to find another way. Plus obesity is a risk factor for cancer, so can't have that.
What's helping so far today.
- Work, yay! I went into the office for a few hours the last couple mornings; that was great. Today I'm working from home since the extra effort of getting dressed and walking to my office sounds like a bit much. Still, so nice to have a distraction and feel somewhat productive.
- Kitties. Even if they do want to sit somewhere between my face and my computer screen, or climb up on my chest which is still healing post-surgery.
- Check-ins from friends. Thanks to those who are thinking of me. It's so appreciated.
- Lifesavers. Thanks Shauna for getting them for me, they do help with the nausea.
Here's hoping day 5 is on the upswing, and hey, only 3 more AC chemo doses to go before switching to the (supposedly) easier taxol. Not that I'm counting!
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