Snowzilla 2016 missed us for the most part - we got maybe 4-5 inches of very fluffy, easily shoveled snow. Nothing compared to last winter. Nonetheless we hunkered down yesterday and watched movies all day long in our jammies. I taught Connor how to use the pause and play buttons on the remote so he could pause his Netflix movie himself when he had to get up for whatever (snack, potty, bother Mom with some tiny detail about something).
I rented and watched, appropriately, Everest. I had read the book based on the same events some time ago. As I thought then, it boggles my mind that anyone would want to climb that mountain and pay thousands of dollars to risk their life getting to the top of the world. I get it in theory I guess; I'm just not that person. And nowadays, more so than ever before, I find I am quite risk-averse. Even getting on a plane seems unnecessary to me now (but I'll still get on one - I'm not done traveling yet). If I'm going to survive this cancer and the treatment to (hopefully) ensure it doesn't come back, it seems irresponsible to risk anything. I've never been skiing; I won't ever go at this point, except maybe cross-country. I don't need to sky dive, or rock climb, or zip line even. And it's okay. I'm not missing out. My kids are the top of my world - as long as I get to watch them grow, I'm good.
Today is sunny so Connor and I went on a snow walk to the store for a few groceries. I don't get nearly enough exercise these days; the fatigue has built up, and day 4 is now almost as bad as day 3. I still feel much better on day 5 but the fatigue lingers. Today is day 5. The store is not quite a half mile away. Not all the sidewalks were shoveled. Connor had a blast walking on all the "flat" snow (anything not yet shoveled). I barely made it home with three not-very-heavy bags of groceries. That walk was my Everest. And getting Connor out of his snowpants and boots was a little bit excruciating - snow is cold, and it was all over him! That side affect lingers too, unfortunately.
But just three more to go. Onward and upward.
Sunday, January 24, 2016
Wednesday, January 20, 2016
Course 9 (of 12) - no whammies!
I am about a half hour away from being done here today... and so far, no allergic reaction! Hooray! I had one tiny tickle in my throat about 1.5 hours in, but I coughed once, took a few deep breaths, and it passed. It looks like this particular pre-med cocktail will work for the longer infusion period. So happy. I really don't want to deal with the whole de-sensitization thing. I think at this point my oncologist would sooner just cut out the drug entirely than put me through it.
Hopefully, lack of allergic reaction also means a better treatment week experience. I'm trying to stay super-hydrated to prevent any weird headache again and eat well to keep fatigue to a minimum.
And the Benadryl again did not put me to sleep, though I was a good bit drowsy for about 15 minutes right after they administered it. That meant I got a full day of remote working in, and also started on the process to refinance our house (fun!).
I also got confirmation that Neulasta injections are wicked expensive!!! That $20K is indeed just for that single injection. I will have 5 injections in total, I believe, maybe 6 if they give me one after the last course. That is INSANITY for a tiny amount of liquid pushed into my arm. That said - my oncologist's assistant (who gave me this info) said the idea is if they can bolster my immune system with the injection, it could save me thousands more in hospital bills if I were to get an infection and needed additional treatment and supervision. Fair point. Still, wow. I'd love to see a cost breakdown for that 20K. More important though is making sure it's coded correctly so my insurance covers it!
Hopefully, lack of allergic reaction also means a better treatment week experience. I'm trying to stay super-hydrated to prevent any weird headache again and eat well to keep fatigue to a minimum.
And the Benadryl again did not put me to sleep, though I was a good bit drowsy for about 15 minutes right after they administered it. That meant I got a full day of remote working in, and also started on the process to refinance our house (fun!).
I also got confirmation that Neulasta injections are wicked expensive!!! That $20K is indeed just for that single injection. I will have 5 injections in total, I believe, maybe 6 if they give me one after the last course. That is INSANITY for a tiny amount of liquid pushed into my arm. That said - my oncologist's assistant (who gave me this info) said the idea is if they can bolster my immune system with the injection, it could save me thousands more in hospital bills if I were to get an infection and needed additional treatment and supervision. Fair point. Still, wow. I'd love to see a cost breakdown for that 20K. More important though is making sure it's coded correctly so my insurance covers it!
Course 9 (of 12)
Here we go again. Back at DFCI for a long day. I haven't started the chemo yet - so we'll be here til at least 6pm (arrived just after 9am). I am getting my pre-meds. We are going with the "after the reaction" treatment. I still took dexamethadose (steroid) at 12 hours and 6 hours before, but didn't have any more of it here. I am getting Solu-Medrol (steroid), Benadryl (whopping 50 mg), and Pepcid. And then we'll start. I think they want it those meds to sit with me a bit before they start... at least that's how it worked last time.
And, this time I got to pick my spot - I took a corner space with a window and a bed. Just in case. the Benadryl did make me a bit sleepy but I didn't fall asleep. The steroid is fighting with it and I suspect it will win again. Plus, I'm working remote. I do take a half PTO day for the week, since I can't be completely available when I'm here, and I usually need a nap on day 3 or 4 at lunchtime.
But my nurse got it right: the first thing she said was "Today is going to be a good day!" I am choosing to believe her entirely.
And, this time I got to pick my spot - I took a corner space with a window and a bed. Just in case. the Benadryl did make me a bit sleepy but I didn't fall asleep. The steroid is fighting with it and I suspect it will win again. Plus, I'm working remote. I do take a half PTO day for the week, since I can't be completely available when I'm here, and I usually need a nap on day 3 or 4 at lunchtime.
But my nurse got it right: the first thing she said was "Today is going to be a good day!" I am choosing to believe her entirely.
Saturday, January 16, 2016
Bad dreams
This was a long week. I guess the fatigue is finally adding up. I decided to drive to work yesterday; I felt I wasn't up for the walk from South Station to the office, at least I was worried I wouldn't be by the end of the day. I also have little bags under my eyes all the time now, which I've never had. I sleep okay once I get to sleep but sometimes I do wake up in the night and it takes a while to fall back asleep. That also hasn't really happened to me before - I'm a champion sleeper.
Last night though I had a bad dream. I was at an appointment and my husband was there with me. A nurse walks in and starts talking about this and that, and I asked about side affects of something, and she said not to worry about it since I was dying. I told her I wasn't but she insisted I was, and I started crying and couldn't stop, and woke up that way, thinking I was dying. But I am not dying. Well, not right this minute. It'll happen eventually. I'd like another 42 years first. 42 years that don't involve any more cancer.
Next round starts Wednesday - pushed out since Monday is a holiday that Dana-Farber recognizes and neither my oncologist nor his assistant are available on Tuesdays. It means less recovery time before the round after that but none of us want to delay treatment if we don't have to. Only consideration otherwise is my Neulasta injection; apparently it's supposed to be administered only every 12-14 days, but my oncologist says this is really an insurance consideration and most of the time, after the first injection insurance claim is approved, they don't care about the timing. I did get a second explanation of benefits from Blue Cross, same as before saying I'm responsible for $20K for hospital services, but no actual bill from Dana-Farber. So I'm not worrying about it. Onward and upward.
Last night though I had a bad dream. I was at an appointment and my husband was there with me. A nurse walks in and starts talking about this and that, and I asked about side affects of something, and she said not to worry about it since I was dying. I told her I wasn't but she insisted I was, and I started crying and couldn't stop, and woke up that way, thinking I was dying. But I am not dying. Well, not right this minute. It'll happen eventually. I'd like another 42 years first. 42 years that don't involve any more cancer.
Next round starts Wednesday - pushed out since Monday is a holiday that Dana-Farber recognizes and neither my oncologist nor his assistant are available on Tuesdays. It means less recovery time before the round after that but none of us want to delay treatment if we don't have to. Only consideration otherwise is my Neulasta injection; apparently it's supposed to be administered only every 12-14 days, but my oncologist says this is really an insurance consideration and most of the time, after the first injection insurance claim is approved, they don't care about the timing. I did get a second explanation of benefits from Blue Cross, same as before saying I'm responsible for $20K for hospital services, but no actual bill from Dana-Farber. So I'm not worrying about it. Onward and upward.
Thursday, January 7, 2016
Course 8 (of 12) - I forgot....
... how evil the evil drug is. Today is day 4. Usually I've perked up a bit by now, but still dragging. Either the longer infusion extended the blah period, or the fatigue is piling up now, or both. I think I'm also dehydrated; eating salty foods to make sure I keep drinking water.
At least I had a small break from it - it was nice to see that the future post-treatment might be totally normal again, at some point. I still haven't called my oncologist about the plan for the next treatment. I am in denial of having to do 4 more 6- to 8-hour stints. And then radiation! Agh.
Not the best day. At least it's not snowing :)
Monday, January 4, 2016
Course 8 (of 12) - longest. day. ever.
If you didn't see the comment on my last post here it is again, for context:
This drug hates me. The feeling is mutual.
At about the same point as last time (volume-wise) I get red palms, a small rash on back of my hands near my thumbs (neither one was itchy at all), and a very tiny wheeze when I breathed extra deep. Chemo is now at a full stop. My oncologist is less optimistic than when we spoke before treatment started re: my body's ability to handle this drug. Nonetheless we are going to try and muddle through. Another steroid (different one), more Benadryl, and an antihistamine that they didn't give me last time. Now I'm waiting about 20 minutes for these things to settle and they'll start it up again. Might work, might not. I didn't fall asleep from the first Benadryl, but I'll bet this second dose knocks me out. Unexpected surprise all over again. But we'll see if this works.
We are finally HOME, twelve hours later. The second round of "pre-meds" did the trick. The nurse I had today believes the different steroid (Solu-Medrol) and the antihistamine (Pepcid injection - it's not just an antacid!) did the trick. I didn't have any other signs of an allergic reaction once we started up again. Also this time the reaction was much more mild, due to the very slow rate of infusion. We'll have a slightly different plan of attack for next time though what that is I won't know til next week probably.
And despite 100mg of Benadryl today, I NEVER FELL ASLEEP. I got sleepy for a bit but it passed. The steroids were waging war with Benadryl all afternoon and apparently the steroids won by a landslide. I was actually quite worried about this yesterday, as I had to start the other steroid 12 hours before my scheduled appointment time, and take another does 6 hours before. I figured I'd be up all night but I managed to sleep ok in between. Not a full night's sleep to be sure - Atavan is on my agenda before bed tonight so I can catch up. Right now I'm totally hopped up on the Solu-Medrol.
The best news is we don't have to go the de-sensitization route! At least we don't have to yet. Apparently that involves being at DFCI literally all day so they can spoon feed the evil drug and watch you incredibly closely - you have a dedicated nurse the whole time - and hopefully get it all in you. And then you have to come back the NEXT day to get the other drug. If it has to happen, it has to happen, but my fingers are crossed...
According to my oncologist, many people don't make it all 12 courses with the oxaliplatin, but usually it is due to neuropathy. I still haven't gotten to that point but they might cut it out of my regimen early for my hypersensitivity. One course at a time.
Only other hiccup might be timing of the neulasta injection, as my next Monday treatment falls on a holiday so it's pushed to Wednesday, putting the injection on a Friday. That only leaves 10 days between the injection and the next infusion which is technically not enough days... but it's up to my doctor.
Anyway. In closing, I'm just glad the reaction wasn't as bad as last time and that it waited this long into the treatment to happen at all. Some people get it the first time! That would be a serious drag. Now I'm 2/3 finished - 4 more super-slow infusions to go.
This drug hates me. The feeling is mutual.
At about the same point as last time (volume-wise) I get red palms, a small rash on back of my hands near my thumbs (neither one was itchy at all), and a very tiny wheeze when I breathed extra deep. Chemo is now at a full stop. My oncologist is less optimistic than when we spoke before treatment started re: my body's ability to handle this drug. Nonetheless we are going to try and muddle through. Another steroid (different one), more Benadryl, and an antihistamine that they didn't give me last time. Now I'm waiting about 20 minutes for these things to settle and they'll start it up again. Might work, might not. I didn't fall asleep from the first Benadryl, but I'll bet this second dose knocks me out. Unexpected surprise all over again. But we'll see if this works.
We are finally HOME, twelve hours later. The second round of "pre-meds" did the trick. The nurse I had today believes the different steroid (Solu-Medrol) and the antihistamine (Pepcid injection - it's not just an antacid!) did the trick. I didn't have any other signs of an allergic reaction once we started up again. Also this time the reaction was much more mild, due to the very slow rate of infusion. We'll have a slightly different plan of attack for next time though what that is I won't know til next week probably.
And despite 100mg of Benadryl today, I NEVER FELL ASLEEP. I got sleepy for a bit but it passed. The steroids were waging war with Benadryl all afternoon and apparently the steroids won by a landslide. I was actually quite worried about this yesterday, as I had to start the other steroid 12 hours before my scheduled appointment time, and take another does 6 hours before. I figured I'd be up all night but I managed to sleep ok in between. Not a full night's sleep to be sure - Atavan is on my agenda before bed tonight so I can catch up. Right now I'm totally hopped up on the Solu-Medrol.
The best news is we don't have to go the de-sensitization route! At least we don't have to yet. Apparently that involves being at DFCI literally all day so they can spoon feed the evil drug and watch you incredibly closely - you have a dedicated nurse the whole time - and hopefully get it all in you. And then you have to come back the NEXT day to get the other drug. If it has to happen, it has to happen, but my fingers are crossed...
According to my oncologist, many people don't make it all 12 courses with the oxaliplatin, but usually it is due to neuropathy. I still haven't gotten to that point but they might cut it out of my regimen early for my hypersensitivity. One course at a time.
Only other hiccup might be timing of the neulasta injection, as my next Monday treatment falls on a holiday so it's pushed to Wednesday, putting the injection on a Friday. That only leaves 10 days between the injection and the next infusion which is technically not enough days... but it's up to my doctor.
Anyway. In closing, I'm just glad the reaction wasn't as bad as last time and that it waited this long into the treatment to happen at all. Some people get it the first time! That would be a serious drag. Now I'm 2/3 finished - 4 more super-slow infusions to go.
Course 8 (of 12)
This time is different! Thanks to the allergic reaction I am full of steroids (dexamethasone), awaiting one final dose of those, a dose of Benadryl, and six fabulous hours of a carefully-monitored oxaliplatin infusion. They ran out of chairs so I have a bed this time - and thanks to the Benadryl I might actually need it. Here we go.
Sunday, January 3, 2016
The Cost of Cancer, updated
Dana-Farber is extremely slow with their billing... and also not terribly specific all the time. My latest explanation of benefits ("EOB") statements show that I'm responsible for a cool 20K in "medical services." There is only one breakout for "IV Therapy" but the rest is lumped together for a service date on which I had no appointments. I can only figure they are lumping all the chemo charges together. The primary EOB declares "benefits are not available for routine services" and the supplemental insurance says something similar. I know it's an error of some kind, as I know my primary insurance covers 80% of the costs of chemotherapy and radiation, and the supplemental plan should pick up the other 20%. I've already written to Dana-Farber's billing department to see what the lump sum is actually related to; it can only be chemo, I'm sure.
It is a reminder of how fortunate I am to have great health insurance. I feel for anybody who doesn't. It shouldn't matter who you work for - single-payer all the way, I say.
So here's an update - these are costs through maybe November chemo. I'm not sure since the last billing was so vague. But here is the current per statements received through 12/18/15:
Chemotherapy 26,912.15
Clinic/Consultation 1,076.00
Emergency Room 1,949.00
Inpatient 6,687.34
Labs/Scans 22,257.00
Medical Supplies 591.03 (these are specific to my ostomy)
Surgery 16,516.50
TOTAL 75,989.02
For a grand total of
Basically the existing categories had no change and the chemotherapy category is added. Out of pocket is currently just over $1,000, still mostly spent on parking, followed by food (from when I was in the hospital or when we're at Dana-Farber all day). Here is that breakdown:
Clothing/supplies 95.13 (again specific to ostomy)
Copays- appts 75.00
Copays- scrips 35.45
Food 315.01
Parking 484.00
TOTAL OOP 1,004.59
Only the copays are part of the first total, everything else is additional. I'm predicting we end up with $150K-$180K in the end, if I go forward with the next round of surgeries. That's... a lot of money. Insanity. But I'm alive, and according to my radiation oncologist whom I met the day of the allergic reaction (and thus have not absorbed much of what he told me), I'm essentially "cured" and all this treatment is insurance to make sure it's eradicated and doesn't come back.
Priceless, right?
It is a reminder of how fortunate I am to have great health insurance. I feel for anybody who doesn't. It shouldn't matter who you work for - single-payer all the way, I say.
So here's an update - these are costs through maybe November chemo. I'm not sure since the last billing was so vague. But here is the current per statements received through 12/18/15:
Chemotherapy 26,912.15
Clinic/Consultation 1,076.00
Emergency Room 1,949.00
Inpatient 6,687.34
Labs/Scans 22,257.00
Medical Supplies 591.03 (these are specific to my ostomy)
Surgery 16,516.50
TOTAL 75,989.02
For a grand total of
Basically the existing categories had no change and the chemotherapy category is added. Out of pocket is currently just over $1,000, still mostly spent on parking, followed by food (from when I was in the hospital or when we're at Dana-Farber all day). Here is that breakdown:
Clothing/supplies 95.13 (again specific to ostomy)
Copays- appts 75.00
Copays- scrips 35.45
Food 315.01
Parking 484.00
TOTAL OOP 1,004.59
Only the copays are part of the first total, everything else is additional. I'm predicting we end up with $150K-$180K in the end, if I go forward with the next round of surgeries. That's... a lot of money. Insanity. But I'm alive, and according to my radiation oncologist whom I met the day of the allergic reaction (and thus have not absorbed much of what he told me), I'm essentially "cured" and all this treatment is insurance to make sure it's eradicated and doesn't come back.
Priceless, right?
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