Breast Cancer Best Practices
February 13, 2015 12:57 PM Subscribe
I've just been diagnosed with breast cancer. As in, Wednesday. It is a small tumor, likely stage 1 or 2, but aggressive (ER+ and her2+) and I will have chemo, radiation, and then hormone-suppressing pills for a number of years. I am 38 years old and there is no history of breast cancer in my family. Needless to say, I am freaking the hell out.
I do not want to google anything. I do not want to read strangers' blogs. I want to do what my doctors (who I believe to be excellent - I am located in a city with a major research university hospital) tell me to do and not worry about the statistics. I have friends who have survived nearly unbeatable cancers; I know that on an individual level, numbers and other people's stories don't really matter. Maybe I will be more interested in that kind of stuff later but for right now, I can't handle it.
What I do think I need, though, is to glean actionable wisdom from real people who have been through this. A friend of a friend told me to ask about a port for chemo rather than having IVs inserted repeatedly, for example, because it was much easier on her veins. And she told me which kind of toothpaste she used to prevent the mouth sores that are a common side effect. That kind of thing is what I'm looking for. Right now I'm so anxious I can't find anything that sounds good to eat - did you have this experience, and did you find something that worked better than trying to force kale down your throat? (Yes, I have a call in to ask about short-term anxiety meds.) Did you find some really excellent distractions (games? books? tv shows?) that kept you occupied during chemo? What the hell should I do about being bald while trying to hold down a professional job? etc.
I don't even know really what to ask. But I know that there have to be things I am not even anticipating that would be helpful to know. So if you know what any of those things are, please tell me. Thank you.
I do not want to google anything. I do not want to read strangers' blogs. I want to do what my doctors (who I believe to be excellent - I am located in a city with a major research university hospital) tell me to do and not worry about the statistics. I have friends who have survived nearly unbeatable cancers; I know that on an individual level, numbers and other people's stories don't really matter. Maybe I will be more interested in that kind of stuff later but for right now, I can't handle it.
What I do think I need, though, is to glean actionable wisdom from real people who have been through this. A friend of a friend told me to ask about a port for chemo rather than having IVs inserted repeatedly, for example, because it was much easier on her veins. And she told me which kind of toothpaste she used to prevent the mouth sores that are a common side effect. That kind of thing is what I'm looking for. Right now I'm so anxious I can't find anything that sounds good to eat - did you have this experience, and did you find something that worked better than trying to force kale down your throat? (Yes, I have a call in to ask about short-term anxiety meds.) Did you find some really excellent distractions (games? books? tv shows?) that kept you occupied during chemo? What the hell should I do about being bald while trying to hold down a professional job? etc.
I don't even know really what to ask. But I know that there have to be things I am not even anticipating that would be helpful to know. So if you know what any of those things are, please tell me. Thank you.
Here are some things that helped me.
#1 Five Lessons I Didn't Learn From Breast Cancer (and One Big One I Did) Smart, funny, and real. Seriously, this book is so good I gave it to a male friend with anal cancer, telling him that not everything would be applicable but what was applicable would be to the nth power.
#2 Make sure to request copies of every test result. Whenever you have a test done, they ask who to send copies to. Tell them: (i) your primary physician, (ii) your breast surgeon, (iii) your radiation therapist, (iv) your medical oncologist, and (v) yourself.
#3 Aquaphor for radiation discomfort.
#4 Tom's deodorant from now on. No aluminum. It interferes with stuff and Tom's is super gentle on your skin.
#5 The single smartest thing anyone told me about breast cancer is that it goes like this (bear in mind that some intermediate steps could be interchanged): 1. Diagnosis. 2. Surgery. 3. Radiation and/or chemo. 4. NED 5. Meltdown. The reason for the meltdown at the very end is that you are so caught up in appointments and so many people's hands on you and eyes on you and you're being brave and tough and you're getting everything done, and then when everything's done... there's this vacuum into which you might fall. Just know it's normal and okay and it doesn't mean anything other than you've been putting off fear and grief until you really are through with it. If you find yourself in that place -- or at any time along your path -- and you want to vent or you want a shoulder, memail me. My cancer was easy, all things considered, but fuck cancer, it's never *easy*.
posted by janey47 at 1:52 PM on February 13, 2015 [5 favorites]
#1 Five Lessons I Didn't Learn From Breast Cancer (and One Big One I Did) Smart, funny, and real. Seriously, this book is so good I gave it to a male friend with anal cancer, telling him that not everything would be applicable but what was applicable would be to the nth power.
#2 Make sure to request copies of every test result. Whenever you have a test done, they ask who to send copies to. Tell them: (i) your primary physician, (ii) your breast surgeon, (iii) your radiation therapist, (iv) your medical oncologist, and (v) yourself.
#3 Aquaphor for radiation discomfort.
#4 Tom's deodorant from now on. No aluminum. It interferes with stuff and Tom's is super gentle on your skin.
#5 The single smartest thing anyone told me about breast cancer is that it goes like this (bear in mind that some intermediate steps could be interchanged): 1. Diagnosis. 2. Surgery. 3. Radiation and/or chemo. 4. NED 5. Meltdown. The reason for the meltdown at the very end is that you are so caught up in appointments and so many people's hands on you and eyes on you and you're being brave and tough and you're getting everything done, and then when everything's done... there's this vacuum into which you might fall. Just know it's normal and okay and it doesn't mean anything other than you've been putting off fear and grief until you really are through with it. If you find yourself in that place -- or at any time along your path -- and you want to vent or you want a shoulder, memail me. My cancer was easy, all things considered, but fuck cancer, it's never *easy*.
posted by janey47 at 1:52 PM on February 13, 2015 [5 favorites]
I've had a number of friends who are 10 years out from Breast Cancer, and who were diagnosed in their thirties.
You may not feel much like eating, so check out smoothies and juices. Cold things seemed to sit well on folk's stomachs and just plain felt good. Don't try to tempt yourself with your favorite foods, because you'll never want to eat them again after you've felt pukey from chemo after eating them. Pot can help with that by the way, so if it's legal where you are, go for it, if you can get a license, do it.
If you feel depressed tell your doctor. It's a thing, don't just chalk it up to the stress.
Stock up on things now, so you don't run out of toilet paper when the last thing you want to do is go to the grocery store.
Hang in there. This is really scary and just know that treatments are a lot easier now, even than 10 years ago. There are lots of women who are surviving and thriving after Breast Cancer.
I'm rooting for an easy treatment and recovery for you!
posted by Ruthless Bunny at 2:13 PM on February 13, 2015 [1 favorite]
You may not feel much like eating, so check out smoothies and juices. Cold things seemed to sit well on folk's stomachs and just plain felt good. Don't try to tempt yourself with your favorite foods, because you'll never want to eat them again after you've felt pukey from chemo after eating them. Pot can help with that by the way, so if it's legal where you are, go for it, if you can get a license, do it.
If you feel depressed tell your doctor. It's a thing, don't just chalk it up to the stress.
Stock up on things now, so you don't run out of toilet paper when the last thing you want to do is go to the grocery store.
Hang in there. This is really scary and just know that treatments are a lot easier now, even than 10 years ago. There are lots of women who are surviving and thriving after Breast Cancer.
I'm rooting for an easy treatment and recovery for you!
posted by Ruthless Bunny at 2:13 PM on February 13, 2015 [1 favorite]
For now, just eat what you want to eat. Times of stress and during chemo aren't when you need to start mainlining kale (unless that's what you want!)
Get one single notebook, keep notes from your doctors offices, medication dates and times, surgery notes etc all in one place. Write down or clip all your doctor's business cards in there. You're about to have a whole LOT of doctors, nurses etc.
You may want to think a little bit about your risk tolerance, especially with the surgery choices. Many women are more comfortable with a double mastectomy over a single or a lumpectomy. It's a tough decision and a very personal one. Make sure you speak with your doctors about the risk reduction from various options.
Yes to the port! I miss my picc line at every blood test and scan. I had crappy veins to start and they did two rounds of chemo through my veins. It sucked. They are all scarred and hard to access now; especially because they can only use one side.
Be careful about what tv/books/movies you watch. Breast cancer, especially the (very rare) type where a woman goes from diagnosis to death in months is everywhere. Ick. I'm not a big fan of pink stuff, friends and family knew that bringing me pink was not welcome.
For chemotherapy, I picked a different friend each treatment and let them be my chemo buddy. Their job was to pick me up, feed me lunch, and keep me company, get me home. Took a bit of stress off the immediate family and meant I got to catch up with people. I didn't eat a hell of a lot during chemo so I don't have a ton of triggers. Except those restaurant buzzer things. My hospital used them for letting you know when your chemo was ready. Two years out and I still hate those things.
posted by five_cents at 2:34 PM on February 13, 2015 [4 favorites]
Get one single notebook, keep notes from your doctors offices, medication dates and times, surgery notes etc all in one place. Write down or clip all your doctor's business cards in there. You're about to have a whole LOT of doctors, nurses etc.
You may want to think a little bit about your risk tolerance, especially with the surgery choices. Many women are more comfortable with a double mastectomy over a single or a lumpectomy. It's a tough decision and a very personal one. Make sure you speak with your doctors about the risk reduction from various options.
Yes to the port! I miss my picc line at every blood test and scan. I had crappy veins to start and they did two rounds of chemo through my veins. It sucked. They are all scarred and hard to access now; especially because they can only use one side.
Be careful about what tv/books/movies you watch. Breast cancer, especially the (very rare) type where a woman goes from diagnosis to death in months is everywhere. Ick. I'm not a big fan of pink stuff, friends and family knew that bringing me pink was not welcome.
For chemotherapy, I picked a different friend each treatment and let them be my chemo buddy. Their job was to pick me up, feed me lunch, and keep me company, get me home. Took a bit of stress off the immediate family and meant I got to catch up with people. I didn't eat a hell of a lot during chemo so I don't have a ton of triggers. Except those restaurant buzzer things. My hospital used them for letting you know when your chemo was ready. Two years out and I still hate those things.
posted by five_cents at 2:34 PM on February 13, 2015 [4 favorites]
My doc recommended a picc rather than a port (because it was less of a big deal to get in and out) and it's working so far. Totally makes blood work way easier. Good call on the short term anxiety support - I found that just having it in my back pocket as an option was enough.
Memail me if you'd like - I was diagnosed in late November last year and am doing chemo first so I'm in the middle of this too. The one thing that I am holding onto is that my oncologist is talking about making treatment decisions now so that in 30 years I don't have to deal with this again. They know what to do with breast cancer these days.
Best of luck.
posted by machine at 3:15 PM on February 13, 2015 [1 favorite]
Memail me if you'd like - I was diagnosed in late November last year and am doing chemo first so I'm in the middle of this too. The one thing that I am holding onto is that my oncologist is talking about making treatment decisions now so that in 30 years I don't have to deal with this again. They know what to do with breast cancer these days.
Best of luck.
posted by machine at 3:15 PM on February 13, 2015 [1 favorite]
I work with someone who's recovering from what you're just heading into. She just finished chemo a few weeks ago. For the record, it was tough, but she's doing great. I don't think she even missed a lot of work.
I met her at work, and we'd gotten to know each other a little before she told me she was recovering from breast cancer surgery. She was still in chemo at that time. I was really surprised, because she looked great, and still had all her hair. When she told me it was a wig, I was stunned.
In my head, wigs were giant weird-looking plastic-y things that you would automatically recognize as a wig. But she just looked like she had nice, thick, stylish hair with bangs. Wigs have apparently come a long way since the 80's - who knew!?
I'm not saying you have to go the wig route - I have another friend who embraced her baldness and is, as far as I know, still rocking it years after chemo. I have another friend who never lost all her hair when she went through it. I think the important thing is for you to choose whatever makes you most comfortable with yourself. If that's a wig, go for it! If it's a colorful scarf or a beanie or a baseball cap, do that.
I'm sorry you're going through this, and I wish you all the best!
posted by kythuen at 3:27 PM on February 13, 2015
I met her at work, and we'd gotten to know each other a little before she told me she was recovering from breast cancer surgery. She was still in chemo at that time. I was really surprised, because she looked great, and still had all her hair. When she told me it was a wig, I was stunned.
In my head, wigs were giant weird-looking plastic-y things that you would automatically recognize as a wig. But she just looked like she had nice, thick, stylish hair with bangs. Wigs have apparently come a long way since the 80's - who knew!?
I'm not saying you have to go the wig route - I have another friend who embraced her baldness and is, as far as I know, still rocking it years after chemo. I have another friend who never lost all her hair when she went through it. I think the important thing is for you to choose whatever makes you most comfortable with yourself. If that's a wig, go for it! If it's a colorful scarf or a beanie or a baseball cap, do that.
I'm sorry you're going through this, and I wish you all the best!
posted by kythuen at 3:27 PM on February 13, 2015
I'm an eight-year survivor of breast cancer. You will get through this.
I found that Breastcancer.org and Young Survival were the best and most helpful websites - BC.org in particular aggregates so much top-flight medical information in one place.
I had a port implanted because I had a tough chemo (adriamycin/taxotere/cytoxan) and I am a "hard stick" even for blood draws.
I was offered the chance at participating in a clinical trial, and I'm glad I did. So if you are offered a clinical trial you might want to at least read the materials.
Go get a dental cleaning before you undergo chemo! It cuts way back on the mouth sores. That is one thing I wish I had done. I had terrible mouth sores, which might have been better if I had gone to the dentist beforehand, and you can't while you're getting chemo.
When I had my chemo, I was loaded up with so many anti-nausea drugs that I didn't really suffer intense nausea - but smells that didn't bother me before (broccoli-cheese soup in the cafeteria!) all of a sudden were really noxious. I drank a LOT of Jamba Juice smoothies because my mouth was really sore all the time.
Lotsa Helping Hands is a great website to coordinate care. There are apparently care coordination apps now. This will help your friends to schedule help for you, and you won't get a whole bunch of casseroles when what you really need is someone to walk the dog or run to the pharmacy.
If you have pets - they tell you to get someone else to scoop the poop. I didn't have help with the cat boxes, so I wore rubber gloves and a surgical mask and scooped anyway. And here I am. What did give me an infection when I was at my neutropenic nadir after chemo was a Slurpee from a movie theater vending machine! Talk to your doctor about infection precautions when undergoing chemo - nobody mentioned Slurpees to me, but I think that avoiding things that attract a lot of germy unwashed hands of the general public is sensible.
I went to a consignment store, as well as Hot Topic (!), and got myself a lot of scarves and kerchiefs. I had a wig - the Cancer Society gave me one for free - and I wore it, but I found the scarves and kerchiefs more comfortable (I underwent chemo in summer).
Memail me if you have any more questions or need to talk. We're pulling for you!
posted by Rosie M. Banks at 3:56 PM on February 13, 2015 [3 favorites]
I found that Breastcancer.org and Young Survival were the best and most helpful websites - BC.org in particular aggregates so much top-flight medical information in one place.
I had a port implanted because I had a tough chemo (adriamycin/taxotere/cytoxan) and I am a "hard stick" even for blood draws.
I was offered the chance at participating in a clinical trial, and I'm glad I did. So if you are offered a clinical trial you might want to at least read the materials.
Go get a dental cleaning before you undergo chemo! It cuts way back on the mouth sores. That is one thing I wish I had done. I had terrible mouth sores, which might have been better if I had gone to the dentist beforehand, and you can't while you're getting chemo.
When I had my chemo, I was loaded up with so many anti-nausea drugs that I didn't really suffer intense nausea - but smells that didn't bother me before (broccoli-cheese soup in the cafeteria!) all of a sudden were really noxious. I drank a LOT of Jamba Juice smoothies because my mouth was really sore all the time.
Lotsa Helping Hands is a great website to coordinate care. There are apparently care coordination apps now. This will help your friends to schedule help for you, and you won't get a whole bunch of casseroles when what you really need is someone to walk the dog or run to the pharmacy.
If you have pets - they tell you to get someone else to scoop the poop. I didn't have help with the cat boxes, so I wore rubber gloves and a surgical mask and scooped anyway. And here I am. What did give me an infection when I was at my neutropenic nadir after chemo was a Slurpee from a movie theater vending machine! Talk to your doctor about infection precautions when undergoing chemo - nobody mentioned Slurpees to me, but I think that avoiding things that attract a lot of germy unwashed hands of the general public is sensible.
I went to a consignment store, as well as Hot Topic (!), and got myself a lot of scarves and kerchiefs. I had a wig - the Cancer Society gave me one for free - and I wore it, but I found the scarves and kerchiefs more comfortable (I underwent chemo in summer).
Memail me if you have any more questions or need to talk. We're pulling for you!
posted by Rosie M. Banks at 3:56 PM on February 13, 2015 [3 favorites]
In the last 4 years, 2 of my closest girlfriends have been treated for triple-negative breast cancer; one was diagnosed at age 36 (with no family history), and the other at 37 (while still nursing a newborn baby, her grandmother had it, she later found out she's + for the BRCA2 gene). So when I asked another friend of mine who is an oncologist for helpful advice I could give each of these other friends she told me that in her opinion, women in their late 30s respond really well to treatment. One bit of practical advice she had is for the patient to drink a big glass of ice water while in the chair getting chemo.
Both of my friends had wigs specially made for them, and they seriously looked like their real hair. One of them who had long hair decided to start progressively cutting her hair shorter over time, and then once her doctor told her that her hair was likely to start falling out soon (this was about 5 months into her treatment), she had it cut very short, because she knew she didn't want to see clumps of hair on her pillow, and she wanted her very young children to get used to her new look. She was pretty happy with that choice.
posted by hush at 4:32 PM on February 13, 2015 [1 favorite]
Both of my friends had wigs specially made for them, and they seriously looked like their real hair. One of them who had long hair decided to start progressively cutting her hair shorter over time, and then once her doctor told her that her hair was likely to start falling out soon (this was about 5 months into her treatment), she had it cut very short, because she knew she didn't want to see clumps of hair on her pillow, and she wanted her very young children to get used to her new look. She was pretty happy with that choice.
posted by hush at 4:32 PM on February 13, 2015 [1 favorite]
Just want to reiterate that being your own advocate and keeping copies of everything that you're given by your providers is super important. I'd advise you to get a big binder and store everything there. Bring a second set of ears to all of your appointments and let that person write down what the doctor says and put that in your binder too. "Be your own best advocate" is the best advice I've ever gotten for my own illness.
I want to just share with you that this is completely normal and completely the exact reaction that most people have to a diagnosis like this and it is totally normal what you're experiencing emotionally. There are literally thousands upon thousands of research articles about how and why people feel the way you feel when they are going through what you're going through. This "freaking out" uncertainty "I don't even know what I need to know" feeling is natural.
One thing that you might want a trusted friend to do is to look into online support groups about your condition, specifically with an eye towards "What did other people wish they knew when they were diagnosed?" There is a wealth of information in these groups, but if you don't want to wade through it all you shouldn't - a lot of times, the people that are there are ones who are having a lot of difficulties with their treatments and with their care, so the information they share can be scary and overwhelming. And you said you didn't want to do that, so definitely, don't do it! Listen to your gut and do what is right for you. Trusting your providers is not a bad thing. You can always get a second opinion if you feel like that's something you'd like to do for peace of mind, but if you're comfortable with the way this is being handled, stick with your care team. You might want to ask them specifically about the psychosocial and emotional components of breast cancer and you might see if they can hook you up with a patient advocate who has gone through this. That's different than going to an in-person or an online support group -- a patient advocate is a trained patient peer, and your doctors might be able to hook you up with that kind of social support resource. Ask if you would like to ask about that, and ask them about ANYTHING you need to ask them about. Of course, there are some things doctors can't or won't tell you, and that is where the advice of patient peers is so helpful. You'll get some of that experiential advice here, definitely, but there will be a lot more of it in an online support group for breast cancer.
Another thing that I have learned is that no one really "gets" it the way another person with a similar diagnosis "gets" it. You might feel weird leaning on people that are in your support network for emotional support. You might feel like you're burdening them or that you're scaring them or that you should shoulder this without putting too much on the people around you. That, too, is a completely and totally normal feeling to have and you might find at some point that going to an online support group to talk to other people with your diagnosis will be really emotionally helpful for you. So I'd suggest gently remaining open to that possibility but again, do NOT do anything you don't want to do. Take care of yourself and do what is best for you and for your emotional well-being right now. And also a lot of the feelings of "I don't want to burden the people I love" is self-created and the people that love you and that you love want nothing more than to be there for you in whatever form that takes.
Eat whatever sounds remotely edible. When I was diagnosed with a chronic illness that made my appetite disappear, I ate a lot of milkshakes. A LOT of milkshakes. Make a milkshake and force yourself to drink three sips of it. If you really can't eat and are just not having it, talk to your doctor about what to do. There are medications that can help your appetite. If you are comfortable with pot, you might try vaporizing or using edibles to help kickstart your appetite. Ask a friend to help you locate some if you can't get it otherwise. Peanut butter. Avocados. An entire batch of lemon bars. Whatever you can do to get those calories in you is good for you right now.
Try to "take it one day at a time," as trite as that sounds. Take as much care of yourself as you can. Enlist friends and loved ones to help distract you, to take you to the hospital, to watch movies with you, to just sit with you and do nothing, to talk about your fears with, whatever you need, lean on your support network if you feel comfortable doing it. Go on as many walks as you can and enjoy the trees and the way they look against the sky. Try to be as present as possible. When you're not present, don't beat yourself up for it. Just be gentle with yourself.
Now might be the perfect time to learn how to knit. I have a lot of friends on dialysis (not chemo but sort of similar, especially the actual physical treatment parts of it) and they love to knit even though they have fistulas in their arms for their treatment. I suggest knitting for everything because it's MY favorite hobby but it is a good thing to do when you're hanging out in a chair for several hour stretches multiple times a week. Or learn a new language, or get really good at solving algebra problems on Khan Academy... if there's anything you've wanted to learn or do that is fairly stationary, do that now. Listen to the book on tape copy of War and Peace or something equally long. I read Gone with the Wind when I was recovering from major surgery and it was so engrossing and helped pass the time. Learn to cross-stitch or start writing short stories. Something creative and consuming and interesting to keep your mind occupied. And something you just LOVE - do you have a favorite book to get lost in? A favorite craft that you've put down for too long because you've been busy lately? Pick it back up again if you can.
Take care. And on preview, yes to LotsaHelpingHands. Share that link far and wide, or if you feel weird doing that have a friend or your husband do it for you. A lot of people love you and want to help support you right now, so giving them a concrete way to do so can't hurt.
posted by sockermom at 5:50 PM on February 13, 2015 [1 favorite]
I want to just share with you that this is completely normal and completely the exact reaction that most people have to a diagnosis like this and it is totally normal what you're experiencing emotionally. There are literally thousands upon thousands of research articles about how and why people feel the way you feel when they are going through what you're going through. This "freaking out" uncertainty "I don't even know what I need to know" feeling is natural.
One thing that you might want a trusted friend to do is to look into online support groups about your condition, specifically with an eye towards "What did other people wish they knew when they were diagnosed?" There is a wealth of information in these groups, but if you don't want to wade through it all you shouldn't - a lot of times, the people that are there are ones who are having a lot of difficulties with their treatments and with their care, so the information they share can be scary and overwhelming. And you said you didn't want to do that, so definitely, don't do it! Listen to your gut and do what is right for you. Trusting your providers is not a bad thing. You can always get a second opinion if you feel like that's something you'd like to do for peace of mind, but if you're comfortable with the way this is being handled, stick with your care team. You might want to ask them specifically about the psychosocial and emotional components of breast cancer and you might see if they can hook you up with a patient advocate who has gone through this. That's different than going to an in-person or an online support group -- a patient advocate is a trained patient peer, and your doctors might be able to hook you up with that kind of social support resource. Ask if you would like to ask about that, and ask them about ANYTHING you need to ask them about. Of course, there are some things doctors can't or won't tell you, and that is where the advice of patient peers is so helpful. You'll get some of that experiential advice here, definitely, but there will be a lot more of it in an online support group for breast cancer.
Another thing that I have learned is that no one really "gets" it the way another person with a similar diagnosis "gets" it. You might feel weird leaning on people that are in your support network for emotional support. You might feel like you're burdening them or that you're scaring them or that you should shoulder this without putting too much on the people around you. That, too, is a completely and totally normal feeling to have and you might find at some point that going to an online support group to talk to other people with your diagnosis will be really emotionally helpful for you. So I'd suggest gently remaining open to that possibility but again, do NOT do anything you don't want to do. Take care of yourself and do what is best for you and for your emotional well-being right now. And also a lot of the feelings of "I don't want to burden the people I love" is self-created and the people that love you and that you love want nothing more than to be there for you in whatever form that takes.
Eat whatever sounds remotely edible. When I was diagnosed with a chronic illness that made my appetite disappear, I ate a lot of milkshakes. A LOT of milkshakes. Make a milkshake and force yourself to drink three sips of it. If you really can't eat and are just not having it, talk to your doctor about what to do. There are medications that can help your appetite. If you are comfortable with pot, you might try vaporizing or using edibles to help kickstart your appetite. Ask a friend to help you locate some if you can't get it otherwise. Peanut butter. Avocados. An entire batch of lemon bars. Whatever you can do to get those calories in you is good for you right now.
Try to "take it one day at a time," as trite as that sounds. Take as much care of yourself as you can. Enlist friends and loved ones to help distract you, to take you to the hospital, to watch movies with you, to just sit with you and do nothing, to talk about your fears with, whatever you need, lean on your support network if you feel comfortable doing it. Go on as many walks as you can and enjoy the trees and the way they look against the sky. Try to be as present as possible. When you're not present, don't beat yourself up for it. Just be gentle with yourself.
Now might be the perfect time to learn how to knit. I have a lot of friends on dialysis (not chemo but sort of similar, especially the actual physical treatment parts of it) and they love to knit even though they have fistulas in their arms for their treatment. I suggest knitting for everything because it's MY favorite hobby but it is a good thing to do when you're hanging out in a chair for several hour stretches multiple times a week. Or learn a new language, or get really good at solving algebra problems on Khan Academy... if there's anything you've wanted to learn or do that is fairly stationary, do that now. Listen to the book on tape copy of War and Peace or something equally long. I read Gone with the Wind when I was recovering from major surgery and it was so engrossing and helped pass the time. Learn to cross-stitch or start writing short stories. Something creative and consuming and interesting to keep your mind occupied. And something you just LOVE - do you have a favorite book to get lost in? A favorite craft that you've put down for too long because you've been busy lately? Pick it back up again if you can.
Take care. And on preview, yes to LotsaHelpingHands. Share that link far and wide, or if you feel weird doing that have a friend or your husband do it for you. A lot of people love you and want to help support you right now, so giving them a concrete way to do so can't hurt.
posted by sockermom at 5:50 PM on February 13, 2015 [1 favorite]
I'm sitting with my wife who is a breast cancer survivor (stage 3+, triple negative). She says: get the port, get some scarfs for your head--you can coordinate them with your outfit (she tried a wig and hated it), bring something you like to do to keep you occupied while doing chemo, and right after chemo eat stuff that goes down easy because it might be coming back up. When you're feeling good, like on chemo off weeks, try to do things that you enjoy.
posted by maurice at 7:56 PM on February 13, 2015 [1 favorite]
posted by maurice at 7:56 PM on February 13, 2015 [1 favorite]
Today (February 13) is a special day for me since it's the 14th anniversary of my breast cancer surgery.
I was in the hospital overnight, sent home with drains. I bought a couple of seamless sports bras that were a bit big but helped support the stitches and the tubing. I'm not squeamish at all, and after a deep breath to look at the surgery site, I was able to manage emptying the drains, etc. That part lasted a week and then the surgeon took out the drains and tubes. That felt a LOT better. I had prescription pain killers for the first couple of days, and then was able to manage the pain with Tylenol. I healed very fast and was back to work in three weeks with really good mobility. I was given some simple arm/shoulder exercises and they helped me recover good flexibility and range of motion.
Next for me was radiation, 5 days a week for 5 weeks. I continued to work full time but got very tired. I'm not sure if it was the radiation or just the time/effort to catch the bus around lunch time from work, head to the hospital, change, get the radiation, change, back on the bus, etc. I had a desk job. If I had a job where I was walking/standing, I might have taken some time off. It's unusual, but I got a nasty radiation burn in the last couple of weeks, and it continued for about 10 days after because I was still "cooking" as it were. Things will have changed dramatically in the 14 years since my treatment so this is probably not a concern anymore. We celebrated the end of radiation with a family holiday at a mountain resort (we live in Alberta so this wasn't a huge journey) and I just pampered myself and rested. It was really restorative to be out of the city and away from hospitals and machines.
I had 4 chemo treatments spaced three weeks apart. I was told that the chemo drugs I was on would make my hair fall out 14 days after my first treatment, and it happened almost like clockwork. For many women this is really traumatic but it wasn't for me, really. I worked in a technical school, not a corporate environment and did not deal with the public. Those things probably made a difference. I didn't bother with any kind of scarf or cover-up, except I wore a hat for sun protection when I went out into the sun. My colleagues told me I "rocked". I was 41 and fat so I'm not sure how honest they were, but they were kind, and everyone just took it in stride.
I had my chemo treatments on Wednedays. For the first two treatments I took the rest of the week off work and went back on Monday. I felt really nauseated but actually threw up only a couple of times. What I found helped was a combination of cold, sweet, and citrus. I ate a ton of orange and lime popsicles and sipped on orange slush drinks and found them very soothing. If I felt up to eating something I ate it, and didn't bother with whether it was healthy. My husband knew an aromatherapist and she came by with a "kit" and got me to sniff a bunch of things, and then mixed up a little vial of the aromas that seemed calming and soothing. For me it was mostly citrusy scents and violets, I think. I sniffed at that as many times a day as I wanted and perhaps it was my imagination, but I found it helped. For the last two chemo treatments, I took the entire time off work. I was easily fatigued, and just read, slept, and drank orange slush drinks. I went back to work three weeks after my last chemo treatment.
One of the treats that meant a lot was going to a "Look Good, Feel Better" workshop. You'll be given a wonderful variety of beautiful makeup. It's free in Canada, and I assume in the US as well. I don't wear makeup, but it was a little like a spa afternoon. If there's something like that in your area, I highly recommend going. I went with a friend, and I think everyone there had a support person with her.
My sons were 4 and 7 when I was going through treatment and it was important to me to keep things as normal as possible for their sakes. In retrospect, I think it was a good thing because it kept me as grounded as possible.
Feel free to MeMail me. This is scary at first, less so as it goes on, and while difficult, is absolutely do-able. Good luck and know that everyone here, especially those of us who have been through it, are sending warm support vibes your way.
posted by angiep at 10:04 PM on February 13, 2015 [4 favorites]
I was in the hospital overnight, sent home with drains. I bought a couple of seamless sports bras that were a bit big but helped support the stitches and the tubing. I'm not squeamish at all, and after a deep breath to look at the surgery site, I was able to manage emptying the drains, etc. That part lasted a week and then the surgeon took out the drains and tubes. That felt a LOT better. I had prescription pain killers for the first couple of days, and then was able to manage the pain with Tylenol. I healed very fast and was back to work in three weeks with really good mobility. I was given some simple arm/shoulder exercises and they helped me recover good flexibility and range of motion.
Next for me was radiation, 5 days a week for 5 weeks. I continued to work full time but got very tired. I'm not sure if it was the radiation or just the time/effort to catch the bus around lunch time from work, head to the hospital, change, get the radiation, change, back on the bus, etc. I had a desk job. If I had a job where I was walking/standing, I might have taken some time off. It's unusual, but I got a nasty radiation burn in the last couple of weeks, and it continued for about 10 days after because I was still "cooking" as it were. Things will have changed dramatically in the 14 years since my treatment so this is probably not a concern anymore. We celebrated the end of radiation with a family holiday at a mountain resort (we live in Alberta so this wasn't a huge journey) and I just pampered myself and rested. It was really restorative to be out of the city and away from hospitals and machines.
I had 4 chemo treatments spaced three weeks apart. I was told that the chemo drugs I was on would make my hair fall out 14 days after my first treatment, and it happened almost like clockwork. For many women this is really traumatic but it wasn't for me, really. I worked in a technical school, not a corporate environment and did not deal with the public. Those things probably made a difference. I didn't bother with any kind of scarf or cover-up, except I wore a hat for sun protection when I went out into the sun. My colleagues told me I "rocked". I was 41 and fat so I'm not sure how honest they were, but they were kind, and everyone just took it in stride.
I had my chemo treatments on Wednedays. For the first two treatments I took the rest of the week off work and went back on Monday. I felt really nauseated but actually threw up only a couple of times. What I found helped was a combination of cold, sweet, and citrus. I ate a ton of orange and lime popsicles and sipped on orange slush drinks and found them very soothing. If I felt up to eating something I ate it, and didn't bother with whether it was healthy. My husband knew an aromatherapist and she came by with a "kit" and got me to sniff a bunch of things, and then mixed up a little vial of the aromas that seemed calming and soothing. For me it was mostly citrusy scents and violets, I think. I sniffed at that as many times a day as I wanted and perhaps it was my imagination, but I found it helped. For the last two chemo treatments, I took the entire time off work. I was easily fatigued, and just read, slept, and drank orange slush drinks. I went back to work three weeks after my last chemo treatment.
One of the treats that meant a lot was going to a "Look Good, Feel Better" workshop. You'll be given a wonderful variety of beautiful makeup. It's free in Canada, and I assume in the US as well. I don't wear makeup, but it was a little like a spa afternoon. If there's something like that in your area, I highly recommend going. I went with a friend, and I think everyone there had a support person with her.
My sons were 4 and 7 when I was going through treatment and it was important to me to keep things as normal as possible for their sakes. In retrospect, I think it was a good thing because it kept me as grounded as possible.
Feel free to MeMail me. This is scary at first, less so as it goes on, and while difficult, is absolutely do-able. Good luck and know that everyone here, especially those of us who have been through it, are sending warm support vibes your way.
posted by angiep at 10:04 PM on February 13, 2015 [4 favorites]
Lots of good advice here! I asked my wife to chime in, since she just finished treatment for bilateral breast cancer (ER/PR+, HER2- stage 2B treated with chemo then a bilateral mastectomy just before Christmas). She didn't feel comfortable reading blogs for a couple of months after diagnosis, but later found it helpful. She found blogging very cathartic, and helpful keeping friends and family updated. She started to write well before being ready to read other people's stories.
- getting a port was a great decision for her, but a port with HER2+ would be even more definite due to Herceptin infusions (typically weekly for a year)
- Crazy Sexy Cancer Tips was really good, despite the name, although the diet recommendations are a bit iffy
- instead of taking notes at appointments record them on your phone/tablet - even if you never listen again you'll have that for reference
- there's lots of magical thinking about cancer, you'll get lots of advice, do what works for you
- if you do get mouth sores, talk to your oncologist early, and get a prescription mouthwash quickly (you'll need to find a compounding pharmacy - most pharmacy's can't put together the mouthwash recipes)
- treatments (and stress) can affect sleep patterns - this will affect your partner as well as you. We ended up in separate beds for a while, which was tough, but better than the alternative.
She has a couple of "things I wish I knew" posts on her blog with more thoughts:
- tips for newly diagnosed
- tips for chemotherapy
Feel free to MeMail me and I'll put you in touch. Good luck and best wishes - our thoughts and prayers are with you.
posted by dttocs at 10:14 PM on February 13, 2015 [2 favorites]
- getting a port was a great decision for her, but a port with HER2+ would be even more definite due to Herceptin infusions (typically weekly for a year)
- Crazy Sexy Cancer Tips was really good, despite the name, although the diet recommendations are a bit iffy
- instead of taking notes at appointments record them on your phone/tablet - even if you never listen again you'll have that for reference
- there's lots of magical thinking about cancer, you'll get lots of advice, do what works for you
- if you do get mouth sores, talk to your oncologist early, and get a prescription mouthwash quickly (you'll need to find a compounding pharmacy - most pharmacy's can't put together the mouthwash recipes)
- treatments (and stress) can affect sleep patterns - this will affect your partner as well as you. We ended up in separate beds for a while, which was tough, but better than the alternative.
She has a couple of "things I wish I knew" posts on her blog with more thoughts:
- tips for newly diagnosed
- tips for chemotherapy
Feel free to MeMail me and I'll put you in touch. Good luck and best wishes - our thoughts and prayers are with you.
posted by dttocs at 10:14 PM on February 13, 2015 [2 favorites]
A couple more things:
- Yes to writing everything down! A cancer diagnosis is overwhelming, and it's so easy to forget what you are told in an appointment because you are under such stress and trying to take in so much information at once. Bring a notebook to all your appointments and write everything down. If you have questions you want to ask your medical team, jot them down in the notebook before your appointment. Get copies of all your medical records. I asked for a copy of my records, and I am very glad I did, because there was information in there that I was not told by my doctor at my appointments.
- I had a lumpectomy and radiation. Post-lumpectomy, I iced the area as much as I could, and that cut way back on the swelling, pain, and need for percocets. When I had radiation, I used Lush's Dream Cream, which was soothing and less sticky than Aquaphor. During radiation, I tried to eat high-protein, and I found that helped the fatigue issues and speeded healing.
- I have a friend who was diagnosed about six months after I was; she was triple positive (ER+/PR+/HER2+) just like you - and she's happy and healthy and enjoying life. What with Tamoxifen, aromatase inhibitors (like Femara and Arimidex), and Herceptin for the HER2, there is so much more to throw at cancer than there was 20 years ago.
posted by Rosie M. Banks at 10:31 AM on February 14, 2015 [1 favorite]
- Yes to writing everything down! A cancer diagnosis is overwhelming, and it's so easy to forget what you are told in an appointment because you are under such stress and trying to take in so much information at once. Bring a notebook to all your appointments and write everything down. If you have questions you want to ask your medical team, jot them down in the notebook before your appointment. Get copies of all your medical records. I asked for a copy of my records, and I am very glad I did, because there was information in there that I was not told by my doctor at my appointments.
- I had a lumpectomy and radiation. Post-lumpectomy, I iced the area as much as I could, and that cut way back on the swelling, pain, and need for percocets. When I had radiation, I used Lush's Dream Cream, which was soothing and less sticky than Aquaphor. During radiation, I tried to eat high-protein, and I found that helped the fatigue issues and speeded healing.
- I have a friend who was diagnosed about six months after I was; she was triple positive (ER+/PR+/HER2+) just like you - and she's happy and healthy and enjoying life. What with Tamoxifen, aromatase inhibitors (like Femara and Arimidex), and Herceptin for the HER2, there is so much more to throw at cancer than there was 20 years ago.
posted by Rosie M. Banks at 10:31 AM on February 14, 2015 [1 favorite]
Trying not to repeat what's already been posted, so much to share...
Yes to the port. I had a regular IV in my arm during Cancer 1 and got a nasty burn because some of the chemo drug leaked out under my skin. Cancer 2, I got a PowerPort and it is much, much better. They will also do your blood draws through your port before you get your chemo, which is great - no bruising.
Once you start chemo, eat whatever your brain & belly can agree upon. Egg sandwiches helped shore up my sad, sad magnesium levels between infusions. Freezing cold Coke helped settle my stomach and I drank a ton of it, even though outside of cancer I HATE Coke and never drink it. If you are craving meat, eat meat - you may find your iron gets depleted during chemo. I've been vegetarian for 20+ years and even I had a craving for a cheeseburger - it passed, but if it hadn't, I would have had one. Pasta & bready carbs in general were a big thing for me during chemo, sweets not at all, but everyone is different. Your body will tell you what it's looking for, listen to it.
Nausea and vomiting may or may not be an issue for you. I did not throw up once during Cancer 1 chemo. Cancer 2 chemo I ended up in the ER with dehydration. It all depends on your body's tolerance to the chemo drugs. If you are using Zofran at home for nausea, ask your doctor to prescribe the ones that melt under your tongue instead of the pills you need to swallow - they work even if you can't keep anything else down.
I can't advocate strongly enough for including a good therapist as a part of your care team. This is heavy stuff, you don't have to deal with it alone. With a therapist in place, you don't have to lay it all on your friends and family either. Cancer takes you to dark places. You can find someone who will not only go with you to the dark places, but will remember to bring the flashlight so you can get back again.
Eat breakfast before you go to the hospital on chemo day. Most infusion centers serve lunch while you are there, depending on the time of day, of course. Just remember these are hospital meals - you might want to bring something of your own if those are not to your liking, or have a friend make a cafeteria run for you. Drink a lot of water before and during the infusion - before, it will help your veins be nice & plump before they stick you, and during, it will soothe your mouth and keep you hydrated.
When they push saline into your port or your IV, you will immediately get a weird taste in your mouth, and it is icky. It doesn't last long, though, you'll be fine in a few seconds after. I used to drink coffee during that part because it killed the salt taste, some folks use hard candies or ginger chews.
Benadryl may be one of the pre-meds they give you just before the infusion. Benadryl through an IV is a special kind of fun if you enjoy feeling loopy. Just be careful with how fast they administer it - one of the nurses once pushed it way too quickly for me and it made my blood pressure shoot up. I would always remind the nurse to push it slowly after that and it didn't bother me again.
Cancer is nerve wracking. An Ativan before bed when I have a rough day or am feeling particularly edgy, though not often because I find it doesn't work as well if I overuse it. Marijuana also for pain and anxiety - mostly edibles because Cancer 2 showed itself in my lung, but I got a vaporizer and I like it a lot. Meditation is one of my most familiar self-care tools, and I have acupuncture once a week, which kept neuropathy at bay this time out.
So many of these little nuggets in my head - I hope any of this helped. Best of luck, good juju your way. xo
posted by deliciae at 10:05 PM on February 14, 2015
Yes to the port. I had a regular IV in my arm during Cancer 1 and got a nasty burn because some of the chemo drug leaked out under my skin. Cancer 2, I got a PowerPort and it is much, much better. They will also do your blood draws through your port before you get your chemo, which is great - no bruising.
Once you start chemo, eat whatever your brain & belly can agree upon. Egg sandwiches helped shore up my sad, sad magnesium levels between infusions. Freezing cold Coke helped settle my stomach and I drank a ton of it, even though outside of cancer I HATE Coke and never drink it. If you are craving meat, eat meat - you may find your iron gets depleted during chemo. I've been vegetarian for 20+ years and even I had a craving for a cheeseburger - it passed, but if it hadn't, I would have had one. Pasta & bready carbs in general were a big thing for me during chemo, sweets not at all, but everyone is different. Your body will tell you what it's looking for, listen to it.
Nausea and vomiting may or may not be an issue for you. I did not throw up once during Cancer 1 chemo. Cancer 2 chemo I ended up in the ER with dehydration. It all depends on your body's tolerance to the chemo drugs. If you are using Zofran at home for nausea, ask your doctor to prescribe the ones that melt under your tongue instead of the pills you need to swallow - they work even if you can't keep anything else down.
I can't advocate strongly enough for including a good therapist as a part of your care team. This is heavy stuff, you don't have to deal with it alone. With a therapist in place, you don't have to lay it all on your friends and family either. Cancer takes you to dark places. You can find someone who will not only go with you to the dark places, but will remember to bring the flashlight so you can get back again.
Eat breakfast before you go to the hospital on chemo day. Most infusion centers serve lunch while you are there, depending on the time of day, of course. Just remember these are hospital meals - you might want to bring something of your own if those are not to your liking, or have a friend make a cafeteria run for you. Drink a lot of water before and during the infusion - before, it will help your veins be nice & plump before they stick you, and during, it will soothe your mouth and keep you hydrated.
When they push saline into your port or your IV, you will immediately get a weird taste in your mouth, and it is icky. It doesn't last long, though, you'll be fine in a few seconds after. I used to drink coffee during that part because it killed the salt taste, some folks use hard candies or ginger chews.
Benadryl may be one of the pre-meds they give you just before the infusion. Benadryl through an IV is a special kind of fun if you enjoy feeling loopy. Just be careful with how fast they administer it - one of the nurses once pushed it way too quickly for me and it made my blood pressure shoot up. I would always remind the nurse to push it slowly after that and it didn't bother me again.
Cancer is nerve wracking. An Ativan before bed when I have a rough day or am feeling particularly edgy, though not often because I find it doesn't work as well if I overuse it. Marijuana also for pain and anxiety - mostly edibles because Cancer 2 showed itself in my lung, but I got a vaporizer and I like it a lot. Meditation is one of my most familiar self-care tools, and I have acupuncture once a week, which kept neuropathy at bay this time out.
So many of these little nuggets in my head - I hope any of this helped. Best of luck, good juju your way. xo
posted by deliciae at 10:05 PM on February 14, 2015
Your profile says you're married, so know this: your partner is going to bust their butt for you over the next few months. As soon as your surgery is past and your drains are out, kick them out for a few days to decompress. Find someone else to check on you for those days so (s)he can be sure you're OK, else they may not just mentally check out.
Yes, it's "for better or for worse" time -- and they will come through for you! But payments deferred are still debts, and you have to let them crash in controlled fashion: they have got to do a thing that seems selfish in order to regroup. Some people go on a weekend with an old friend, or out of town to see family, whatever. But make sure they know you are sending them off with joy and gratitude.
posted by wenestvedt at 8:02 AM on February 16, 2015
Yes, it's "for better or for worse" time -- and they will come through for you! But payments deferred are still debts, and you have to let them crash in controlled fashion: they have got to do a thing that seems selfish in order to regroup. Some people go on a weekend with an old friend, or out of town to see family, whatever. But make sure they know you are sending them off with joy and gratitude.
posted by wenestvedt at 8:02 AM on February 16, 2015
You may also consider finding the book "Stand By Her: A Breast Cancer Guide for Men" by John W. Anderson.
It is like a book full of the advice your partner's best buddy would give to him, if that buddy was from a family with a lot of experience with breast cancer, and who had time to do some research. You are going to be asking him a lot of painful, existential questions, and it's only fair that he gets a little prep. :7)
The guy has a web site, too: http://standbyher.org The content is getting a little dated -- e.g., it links to the Border's web site to buy the book -- but the interviews and short pieces are still good.
posted by wenestvedt at 8:10 AM on February 16, 2015
It is like a book full of the advice your partner's best buddy would give to him, if that buddy was from a family with a lot of experience with breast cancer, and who had time to do some research. You are going to be asking him a lot of painful, existential questions, and it's only fair that he gets a little prep. :7)
The guy has a web site, too: http://standbyher.org The content is getting a little dated -- e.g., it links to the Border's web site to buy the book -- but the interviews and short pieces are still good.
posted by wenestvedt at 8:10 AM on February 16, 2015
Response by poster: Thank you, everyone, more than I can say. And thank you for the memails, too. Every one of you have been helpful and I can't tell you how much I appreciate the time you took to share your experiences with me. This next year is not going to be much fun no matter what happens, but a small part of me is starting to believe I might (MIGHT!) get through it. So thank you.
posted by something something at 7:16 AM on February 17, 2015 [1 favorite]
posted by something something at 7:16 AM on February 17, 2015 [1 favorite]
This thread is closed to new comments.
Once you get your chemo & surgery scheduled, you -- or someone for you -- can throw up a list of tasks and then dump in a bunch of email addresses of people who will then get an invitation. It's great for when someone offers to help: they may be uncertain about what they can offer, and you may not know what you need, so this makes it easier for both parties.
(Also, good luck, hang in there, and take a lot of notes during your appointments -- consider getting a composition notebook and carrying it to every damn appointment you go to. Also, get everybody's business card.)
posted by wenestvedt at 1:23 PM on February 13, 2015 [1 favorite]