We have hair, I repeat, we have hair!
Posted: Sun Feb 05, 2006 6:07 am
Yes, Mrs. Bug is done with chemotherapy! Let me tell you, it's been a long, long slog for the both of us... but we're all better now. Sorta.
The chemo is done, and now all that remains is the reconstructive surgery. There's a breast-tissue expander to be removed, an implant to put in its place, and a reduction surgery to make both breasts match, plus an injection port to be removed. (Like myself, Mrs. Bug is a real-life cyborg for the time being, though my implant is permanent.). On top of all this, Mrs. Bug is growing in hair again, though it's all going to be very, very white peach-fuzz for a while, until the hair follicles get their act together.
What have we taken from this experience with chemotherapy? Several things! If you or someone you know is going to have chemo, here are some things you should know.
1: Chemotherapy is, despite what all the medical journals and doctors say, an experimental science. To be precise, the docs can tell you what the likely side-effects of chemotherapy will be, but as of now, they can't tell you what exactly will happen. This is through no fault of the docs, really. They just don't have enough genetic data to correlate the results of chemo with every patients lifestyle, genetics, and general state of health. Give it 10-20 years and they'll at least have a good idea of what will happen to you based on your DNA. Mayo Clinic Rochester is currently building a bio/genetic research floor, for the express purpose of personalizing one's medical care through genetic testing. Give it some time.
2: One of the things they don't mention specifically in the brochure they give you about chemo is that your nose-hair will fall out. (Along with 'other' hair, but this causes less of a problem.) As trivial as this sounds, it's actually very annoying. With no nose hair, there's no place for boogers to clump up for easy removal, and when you get a runny nose, brother, it runs. Stock up on those moisturizer-impregnated tissues, you'll be thankful you did.
3: As a general rule, you and your docs will figure out how to minimize the side effects of your current chemotherapy cocktail right when it's time for the last dose of said cocktail. Mrs. Bug had two different cocktails--four doses each. By the time the fourth dose came up, we'd figured out how to make the side effects fairly trivial. Until then, it was a matter of trial and error: "Hey, let's cut this back//increase drug X."
4: When you visit your oncologist... grill him. Don't let him out of the office until you've got every question answered to your satisfaction. Be especially certain to ask about all possible side effects. We got burned by this for one of the chemo courses, namely because our main oncologist was a 'fellow' (a full-on doctor, but a newblood doctor monitored by a pro), and only when we mentioned the side effect to her over a panicked phone call did we get advice. Had we really grilled her right at the start, this wouldn't have happened. Thankfully it was an annoying but minor side-effect.
5: Invest in a MP3 or CD player that's portable. Chemo drugs take a good long while to inject; you'll be at the office for a good two hours at the minimum. Or bring a good thick book.
6: If you are bad with needles, see if you can get an injection port implanted during the surgery used to remove the cancer. Mrs. Bug had a subclavian port installed--the result was a bump just below her collarbone, which consisted of a half-dollar sized piece of metal and plastic that could be used for injections, blood work, and anything else involving a needle. The docs supplied us with a topical analgesic (nerve deadener, basically) that we could spread over the port before a visit to make injections fairly painless.
7: Your sleep schedule, whether you are the patient or the significant other, will be destroyed. There's a lot of steroids used in chemo, and those will wreck the patient's plans to sleep heartily, and in turn, make it quite difficult for the spouse to maintain normalcy.
8: Expect mood swings from the patient. Be supportive--chemotherapy is basically having large amounts of carefully concocted poison injected into one's body. There's a fair amount of pain involved.
9: You (the patient) should keep a 'chemo journal'. Detail how you felt and when you felt that way, when and how much of each drug you took, and any other general impressions. Aside from being a keepsake ("Man, remember when you couldn't sleep for 36 hours?") it's a very useful thing to show your oncologist. With detailed effect-over-time data from a journal, your doc can better plan your treatment.
10: Have good insurance. I know this isn't something that everyone can do, but let me tell you, having good insurance is a godsend for chemo. Expect to see bills totalling forty to sixty thousand dollars before the insurance kicks in. Try not to freak out--most hospitals are happy if you pay them at all. Figure out how much you can afford to pay a month and pay it, and pay it regularly so the hospital doesn't get antsy on you. They know where you live.
So long as you keep paying 'em regularly, they're usually pretty happy.
11: Sounds corny... but have activities planned that cater to all kinds of moods. Mrs. Bug and I used ABC's Lost series on DVD to burn a couple of hours a day for when she wasn't feeling well. The suspense is a great painkiller. When she was totally ramped up on 'roids, we'd go shopping to burn off some energy. Stuff like that. Netflix was a total godsend.
12: If you aren't the patient.... know that sometimes, it's a simple case of 'you can't do jack squat to help'. Quite a few were the times when I'd simply have to retreat to my lair, because anything I tried to do didn't help and only made Mrs. Bug get mad. (Yes, it was the drugs//side-effects.)
13: Yes indeedy, painkillers are wonderful. Don't skimp, don't overdo 'em. But use 'em. If the patient has a tissue expander installed, be aware that regular painkillers didn't do much to alleviate the pain in our case. Use muscle relaxants--the breast-expander is pushing out the pectoral muscle, and the muscle doesn't like this much and thus will spasm in a very painful manner. Muscle relaxants and a small side order of prescription narcotics to handle bone-marrow pain did the trick for us. (Patient will sometimes be injected with drugs that stimulate white-cell production--as this takes place in the marrow, the bones will sometimes hurt, particularly the large bones of the body like the femur.)
14: The chemo patient will, as you might imagine, be quite susceptible to the random cold virus and other such ailments. I heartily recommend a thorough regimen of handwashing, sleeping in separate beds, and cleaning your dishes with very hot water. We had a couple of colds come and knock both of us ass over teakettle.
15: At some point, your oncologist will probably bust out the statistical data. You'll likely find it depressing. My advice is to not completely ignore it, but use it instead as a guide for further treatment. Treasure what time you've got and damn the numbers, full speed ahead!
Do what the docs say is healthy, but don't fret too much about it. Worry is a great source of stress, and stress is baaaad. In our case, nothing much has changed aside from the need to have extra-rigorous mammograms. Your mileage may vary, but I can say without hesitation that cancer treatment really puts your relationship to the test.
16: The patient is very likely, pardon my French, going to feel like absolute shit most of the time. If the patient is your spouse, and said spouse was doing a particular set of house-chores, find a way to either do those chores yourself or help the patient with them as much as possible. You'll both be thankful for it. However, there will come a time when your spouse//the patient will have a case of 'leave me the hell alone, I can do this myself!'. In that case, monitor closely, but dont' interfere unless things go badly. One of Mrs. Bug's chemo courses caused her fingers and toes to go very numb, and as a result, I became her Number One helper in the kitchen. She had no problems with cooking dinner, but handling knives to chop//slice (or opening jars) things up very quickly became my chief duty there, and I have since become an expert on food preparation. Since chemo started we've really turned cooking dinner into a two-person routine, and it's helped our relationship immensely. I foresee being Chief Onion Chopper for many years to come.
It's a nice time to talk over the day, too.
----
Like I said, now it's just down to your typical surgeries, and those we deal with quite well.
As for myself, I'm back in the swing of looking for a job (these past months I've been a in-home nurse), and while I'm happy to be slogging through things, I'm generally pissed at the job market. Hard to quantify, but apparently seven years' service experience doesn't hold a candle to some tinpot degree stapled to a raw newblood. Bleah. I got three placement services looking for me as well as my own efforts--something will come up eventually. If it doesn't, I'm going back to school so I can get a tinpot degree myself. [/surly]
So, all is actually pretty well, folks. We're not hurting financially, chemo's done, it's mainly getting back into routine with a few more stops under the knife in the future. If you want to find me online, I've dumped EVE and gone back to City of Heroes/Villains, global handle @Entropic Shift.
Also, if you like puzzle games... go buy TubeTwist. It's published through Garage Games, and well worth the twenty bucks. It's been keeping me sane for the last couple weeks.
The chemo is done, and now all that remains is the reconstructive surgery. There's a breast-tissue expander to be removed, an implant to put in its place, and a reduction surgery to make both breasts match, plus an injection port to be removed. (Like myself, Mrs. Bug is a real-life cyborg for the time being, though my implant is permanent.). On top of all this, Mrs. Bug is growing in hair again, though it's all going to be very, very white peach-fuzz for a while, until the hair follicles get their act together.
What have we taken from this experience with chemotherapy? Several things! If you or someone you know is going to have chemo, here are some things you should know.
1: Chemotherapy is, despite what all the medical journals and doctors say, an experimental science. To be precise, the docs can tell you what the likely side-effects of chemotherapy will be, but as of now, they can't tell you what exactly will happen. This is through no fault of the docs, really. They just don't have enough genetic data to correlate the results of chemo with every patients lifestyle, genetics, and general state of health. Give it 10-20 years and they'll at least have a good idea of what will happen to you based on your DNA. Mayo Clinic Rochester is currently building a bio/genetic research floor, for the express purpose of personalizing one's medical care through genetic testing. Give it some time.
2: One of the things they don't mention specifically in the brochure they give you about chemo is that your nose-hair will fall out. (Along with 'other' hair, but this causes less of a problem.) As trivial as this sounds, it's actually very annoying. With no nose hair, there's no place for boogers to clump up for easy removal, and when you get a runny nose, brother, it runs. Stock up on those moisturizer-impregnated tissues, you'll be thankful you did.
3: As a general rule, you and your docs will figure out how to minimize the side effects of your current chemotherapy cocktail right when it's time for the last dose of said cocktail. Mrs. Bug had two different cocktails--four doses each. By the time the fourth dose came up, we'd figured out how to make the side effects fairly trivial. Until then, it was a matter of trial and error: "Hey, let's cut this back//increase drug X."
4: When you visit your oncologist... grill him. Don't let him out of the office until you've got every question answered to your satisfaction. Be especially certain to ask about all possible side effects. We got burned by this for one of the chemo courses, namely because our main oncologist was a 'fellow' (a full-on doctor, but a newblood doctor monitored by a pro), and only when we mentioned the side effect to her over a panicked phone call did we get advice. Had we really grilled her right at the start, this wouldn't have happened. Thankfully it was an annoying but minor side-effect.
5: Invest in a MP3 or CD player that's portable. Chemo drugs take a good long while to inject; you'll be at the office for a good two hours at the minimum. Or bring a good thick book.
6: If you are bad with needles, see if you can get an injection port implanted during the surgery used to remove the cancer. Mrs. Bug had a subclavian port installed--the result was a bump just below her collarbone, which consisted of a half-dollar sized piece of metal and plastic that could be used for injections, blood work, and anything else involving a needle. The docs supplied us with a topical analgesic (nerve deadener, basically) that we could spread over the port before a visit to make injections fairly painless.
7: Your sleep schedule, whether you are the patient or the significant other, will be destroyed. There's a lot of steroids used in chemo, and those will wreck the patient's plans to sleep heartily, and in turn, make it quite difficult for the spouse to maintain normalcy.
8: Expect mood swings from the patient. Be supportive--chemotherapy is basically having large amounts of carefully concocted poison injected into one's body. There's a fair amount of pain involved.
9: You (the patient) should keep a 'chemo journal'. Detail how you felt and when you felt that way, when and how much of each drug you took, and any other general impressions. Aside from being a keepsake ("Man, remember when you couldn't sleep for 36 hours?") it's a very useful thing to show your oncologist. With detailed effect-over-time data from a journal, your doc can better plan your treatment.
10: Have good insurance. I know this isn't something that everyone can do, but let me tell you, having good insurance is a godsend for chemo. Expect to see bills totalling forty to sixty thousand dollars before the insurance kicks in. Try not to freak out--most hospitals are happy if you pay them at all. Figure out how much you can afford to pay a month and pay it, and pay it regularly so the hospital doesn't get antsy on you. They know where you live.
So long as you keep paying 'em regularly, they're usually pretty happy.11: Sounds corny... but have activities planned that cater to all kinds of moods. Mrs. Bug and I used ABC's Lost series on DVD to burn a couple of hours a day for when she wasn't feeling well. The suspense is a great painkiller. When she was totally ramped up on 'roids, we'd go shopping to burn off some energy. Stuff like that. Netflix was a total godsend.
12: If you aren't the patient.... know that sometimes, it's a simple case of 'you can't do jack squat to help'. Quite a few were the times when I'd simply have to retreat to my lair, because anything I tried to do didn't help and only made Mrs. Bug get mad. (Yes, it was the drugs//side-effects.)
13: Yes indeedy, painkillers are wonderful. Don't skimp, don't overdo 'em. But use 'em. If the patient has a tissue expander installed, be aware that regular painkillers didn't do much to alleviate the pain in our case. Use muscle relaxants--the breast-expander is pushing out the pectoral muscle, and the muscle doesn't like this much and thus will spasm in a very painful manner. Muscle relaxants and a small side order of prescription narcotics to handle bone-marrow pain did the trick for us. (Patient will sometimes be injected with drugs that stimulate white-cell production--as this takes place in the marrow, the bones will sometimes hurt, particularly the large bones of the body like the femur.)
14: The chemo patient will, as you might imagine, be quite susceptible to the random cold virus and other such ailments. I heartily recommend a thorough regimen of handwashing, sleeping in separate beds, and cleaning your dishes with very hot water. We had a couple of colds come and knock both of us ass over teakettle.
15: At some point, your oncologist will probably bust out the statistical data. You'll likely find it depressing. My advice is to not completely ignore it, but use it instead as a guide for further treatment. Treasure what time you've got and damn the numbers, full speed ahead!
Do what the docs say is healthy, but don't fret too much about it. Worry is a great source of stress, and stress is baaaad. In our case, nothing much has changed aside from the need to have extra-rigorous mammograms. Your mileage may vary, but I can say without hesitation that cancer treatment really puts your relationship to the test.16: The patient is very likely, pardon my French, going to feel like absolute shit most of the time. If the patient is your spouse, and said spouse was doing a particular set of house-chores, find a way to either do those chores yourself or help the patient with them as much as possible. You'll both be thankful for it. However, there will come a time when your spouse//the patient will have a case of 'leave me the hell alone, I can do this myself!'. In that case, monitor closely, but dont' interfere unless things go badly. One of Mrs. Bug's chemo courses caused her fingers and toes to go very numb, and as a result, I became her Number One helper in the kitchen. She had no problems with cooking dinner, but handling knives to chop//slice (or opening jars) things up very quickly became my chief duty there, and I have since become an expert on food preparation. Since chemo started we've really turned cooking dinner into a two-person routine, and it's helped our relationship immensely. I foresee being Chief Onion Chopper for many years to come.
It's a nice time to talk over the day, too.----
Like I said, now it's just down to your typical surgeries, and those we deal with quite well.
As for myself, I'm back in the swing of looking for a job (these past months I've been a in-home nurse), and while I'm happy to be slogging through things, I'm generally pissed at the job market. Hard to quantify, but apparently seven years' service experience doesn't hold a candle to some tinpot degree stapled to a raw newblood. Bleah. I got three placement services looking for me as well as my own efforts--something will come up eventually. If it doesn't, I'm going back to school so I can get a tinpot degree myself. [/surly]
So, all is actually pretty well, folks. We're not hurting financially, chemo's done, it's mainly getting back into routine with a few more stops under the knife in the future. If you want to find me online, I've dumped EVE and gone back to City of Heroes/Villains, global handle @Entropic Shift.
Also, if you like puzzle games... go buy TubeTwist. It's published through Garage Games, and well worth the twenty bucks. It's been keeping me sane for the last couple weeks.
