Today marks the first in a series of posts that I will be doing about CAREGIVERS. This also serves as a hint to those of you that I asked to guest post (hint, hint, dear hubby, that also means you), to get me your responses ASAP. I've got the first two returned...now I need the rest of you.
First off, "caregiver" is a pretty generic term, and if you think about it, I have had so many people taking care of me and my family over the course of this past year and throughout my diagnosis and treatments. There are the people that have fed us, given me rides to the hospital, taken care of the kids, and helped us out financially. For all of these things I am truly grateful!
However, for the purposes of this series, "caregiver" means the primary person responsible on a day-to-day, round-the-clock basis for taking care of the patient and all of their specific needs. So, in my case, my husband Keith. (At the end of this series, I will be posting my thoughts on how amazing he has been throughout this entire process. But I'm not sure that I can be coherent enough right now to put my thoughts into words).
Let's just say that he's been a rock and exactly what I needed. And sometimes I'm amazed at what I find myself asking him to do. Or rather, not asking him to do, but needing him to do and not wanting to admit it.
When you think of yourself as a pretty self-sufficient person ready to take on the world, and then you find yourself in a position where you cannot even come close to being that person you once were, it is sometimes VERY HARD to admit that you need someone to take care of you. And you might not be the best patient. And you might do stupid things like trying to carry heavy crap across a soccer a field when you shouldn't...or unload boxes and boxes of textbooks at work...or try and stand up long enough to cook dinner. You should see Keith and the kids respond to my follies: Keith just looks at me with that "would you just give me the blankety-blank cooler before you actually do die and I have to carry you across the field too?!" look; cute little girl child hovers around me waiting to prop me up, or pick up everything; and surly teenage boy gives me the huffy teenage eyeroll before saying, "seriously mom, just give me the _______/shut up and put on my sweatshirt/give me the keys, I'm driving."
Next week, I'll be posting the first of my "guest posts" from people that I know who have been caregivers (which, by the way, is a SUCKY job that I'm not sure I'd be good at). Until then, I thought that I'd start with a link to a great article that I read this summer about just this problem: letting a caregiver actually take care of you. It's important to understand that caregivers want to help you and taking care of you is probably the only way that they can feel like they are doing something to help you. It's kind of a give-and-take relationship that you both get something from. Seriously, you have to read it...click here.
And if you've been checking in here often enough, you'll understand immediately why I love this article so much. HILARIOUS! And the scene he describes is almost identical to ones I've had with my family on more than one occasion (minus the cool, international locale).
Showing posts with label help. Show all posts
Showing posts with label help. Show all posts
Wednesday, September 4, 2013
Friday, August 2, 2013
Speak No Evil
Or, "What Not To Say To a Cancer Patient."
First, before you take offense to this particular post, I want to say that it probably wasn't aimed at you, my dear friends and family. For the most part, everyone has been wonderful to me, and nothing but supportive, and always quick to offer help when I most needed it. And this is not a "rant" against stupidity (although, it unfortunately exists..just wait for my post about the DMV), but rather a way to help all of us be more considerate when talking with cancer patients.
When you are a cancer patient (or probably any person suffering from a long-term illness or life-altering disease), you get asked questions...a lot of questions...all the time. And quite often, they are the same questions over and over and over. This is really because most people are so caring and want to help/understand.
If you are lucky enough to know people that have traveled the cancer journey before you, or with you, or even after you, you tend to bond with these people in a way that I cannot fully explain. Sometimes, they seem to be the only ones to know exactly the right words of encouragement to give you when you feel like crap. So you get together for coffee, or you chat on Facebook, and you feel like you can laugh with these people in a way that others can't quite grasp. And while you're chatting, you discover that you all have the same "pet peeves" when it comes to things that people, well-meaning or not, say to you.
I asked all my "cancer peeps" (yes, that really is how I think about them) for their input on this post. Our roll call includes: Hodgkin's Lymphoma, Testicular, Lung, Thyroid, and 7 Breast Cancers (6, plus me)...so 11 people total. Five of us went to the same high school and are basically all the same graduating class so I wonder if I should do a study of what was in the drinking fountains there and how many of us there really are and whether it's higher or lower than the average. 1 is family, 1 is the mom of a high school friend, and the remaining 4 are friends I have met along the way through school, kids' schools, and sports. One has been "lucky" enough to go through cancer twice, 15 years apart. (UGH! Cannot even imagine...she's my hero). Some are newly diagnosed, some just starting treatment, some just finished treatments, some are one year post-treatments, and a few are lucky enough to have hit their 5 year cancer-free mark.
Here are the questions that I asked: "Do you have one, two, or even ten things that bug(ged) you that people, well-meaning or not, say/said to you? Or things you just got tired of hearing? Whether it was friends, family, acquaintances, or doctors...I'd love your thoughts." (Now, please note, at the time I'm writing this, a couple of people had not yet responded because they are likely enjoying their summer and not waiting around for emails from me. I will update with their responses as needed).
These people were very thoughtful with their responses, and all agreed that for the most part people were supportive and wonderful, as I've already mentioned. Many of us think it's possible we have even been guilty of some of these "no-no's" at one time or another. Several were worried that it might seem like they are nit-picking, but I assured them they were not. I culled the responses and have included our advice to you...in no particular order...here's what bugs us the most...(direct quotes are marked, otherwise I've compiled and paraphrased).
Please do not be one of these people:
"The One Up"
Every single one of us remarked about this. These are the well-meaning people who want to tell you a story about someone they know who has cancer "much worse" than you do, and how said person is soldiering on. If they can do it, so can you. I'm pretty sure this is designed to "buck up" our spirits. Unfortunately, it has the opposite effect. Here's the thing, we all know someone who has it much worse than we do...we see them EVERY TIME we go in for treatment. (For me, it was the lady next to me, pregnant with twins, who was getting chemo. Yep, my Stage 3 Angry Cancer didn't seem so bad that day). BUT, whether we are in the throws of treatment, or about to start some scary phase of treatments, or even desperately trying to recuperate from the last round of chemo, WE FEEL BAD. And we have a right to feel bad because "it just sucks to be in the middle of it." I'm sorry that your neighbor's mother-in-law/friend from high school/second cousin, twice removed has it worse, but I only have enough energy to care about me, and all your comments do are make me feel bad about myself for being a wuss.
"The One Up, part 2"
My cancer peeps are "young" in the grand scheme of things. Hearing about how your grandma had breast cancer when she was in her 80's does nothing for us. We have young families, jobs, and would like to think that we're pretty active go-getters. "I know they were trying to be well-meaning but their mothers were 70+ when they were diagnosed, not 42! Come on, I have young kids and a whole life." Not to mention the fact that cancer medicine has advanced GREATLY in the last few decades, so these experiences, while sad, are completely irrelevant to our situation.
"Compare and Contrast"
Please do not compare your health "crises" and experiences with mine. Now, I'm the first to raise my hand and say that I'm sure I do this with my cancer peeps (but we're allowed, because we try and garner info from each other about what the unknown is like), and I apologize to anyone I've ever done this to in the past, and know I'm working really hard NOT to do this ever again. But please do not talk about your benign lump or your hazy mammogram results or how it was a scary couple of days for you thinking you might have cancer, but thank God you don't. Now, if I'm joking about my hideous MRI, and you've had one also, please, feel free to commiserate about that. But your experiences are not mine. Which leads me to...
"I Know How You Feel"
NO YOU DON'T. Even if you've had the same drugs, and the same doctors, and the same diagnosis. You have no idea how I feel. Every time I hear this from someone (usually a random stranger out in the community, or someone over the phone I have to deal with when "discussing" insurance...or the DMV), I want to lose it. If you take nothing else to heart from this post, please do not ever say these words again.
"God's Plan"
I am the first to admit that I'm not the most active church-goer out there, but I definitely believe in God, and pray for strength a lot. However, I'd like to think that he is not a mean and vindictive god who would want me to feel this terrible. Telling me my cancer is "God's plan for me and is my cross to bear" just doesn't work for me because I disagree. Perhaps, years from now, it might be appropriate to have a discussion about how having cancer changed my life/life plan, but not now. Not while I'm right in the middle of it. All this will do is make someone stop believing in God, or start hating God.
"God's Plan, part 2"
Or, "But you're such a good person." Again, cancer sucks. Random, stupid, and angry are all words that I use to describe it. Believe me, I've given quite a bit of thought to "wow! You'd have thought I would have some good karma points stored up." This is okay for me to think...but not at all helpful for you to say.
"Be Positive"
This is kind of "God's Plan, part 3" in my opinion. Yes, I think that attitude is a key component, and my cancer peeps completely agree. However, telling someone "attitude is everything" or "if you just have a positive attitude, it will be okay" is JUST NOT TRUE. I've been told I have a pretty remarkable attitude considering what I've been through, and they keep finding cancer every time they do a surgery or a scan. And then I get pissed and hate everyone. And then I feel guilty for not having a positive attitude. Lather. Rinse. Repeat. Attitude helps, but a positive attitude is not going to cure you. It is okay to feel bad and a cancer patient needs that permission not to be happy all the time.
"How Are You Feeling?"
Especially when it includes that look of pity in your eyes. This was one of my personal pet peeves and I'm glad that I wasn't the only one. I felt I was jinxing something if I answered, "not too bad." Wow, if that isn't asking the chemo gods to rain holy hell down on you, I don't know what is?! And if the reverse is true and I'm not doing well, you don't really want to know all the gory details, so I just wouldn't tell you. The sentiment is nice, but this is just not the right question (see below for what to ask instead).
"You Look Good"
The hell I do. What you really mean (ie: what you're amazed about) is that I don't look like a Holocaust survivor, which is how you think a cancer patient should look thanks to movies/TV/your grandma's cancer experience from the 1970s. Even if, God forbid, we really do look better than we've ever looked in our lifetime, we feel LIKE CRAP. We don't recognize the person we see in the mirror. Tell me I look good bald, that eyelashes are overrated, that my coloring seems good today...find something meaningful and specific...and maybe even funny. Anything other than something that sounds canned, and is really just a well-meaning lie. In this same category are "someone as young and healthy as you" which I hear from my doctors all the time. I HAVE CANCER...I am not healthy. Pick different words.
"The Health Nut"
This one was a hot button for us. We've all run into the person who says "I eat this or don't eat that" or "how they never drink milk because of hormones and all the other things they are careful not to eat, blah, blah, blah." As one friend put it so eloquently, "Helpful? No. Interesting? Hardly. Even if it were, it's a bit late don't you think?" Another said, "that's great for them but 1) I have already been DIAGNOSED with cancer and don't need any guilt on health habits and 2) HELLO, I am triple negative - hormones aren't a factor in my type of breast cancer. *SIGH*"
"The Cures"
Again, I fully believe that curing my cancer is a process and should involve a lot of different elements like traditional and non-traditional therapies. But why must we feel the need to perpetuate the chain letter email that if we just eat 12 pounds of bananas every 3rd Thursday we will be cured, and here's the true-life case of the one person, 300 years ago, that it happened to. Please don't get me started on what I think of these "cures" (magic potions) and whether they actually work. One of my peeps shared how a well-meaning person sent an article about "willing away the cancer through positive body-talk." Now, if you had my EXACT type of diagnosis, and you thumbed your nose at Western medicine and ate those bananas and you were actually cured, then sure, let's talk. I'm open to incorporating bananas into my diet. But I'm going to make it a PART of my treatments, and not rely solely on them...or any type of treatment for that matter. If you really want to find a way to help me get better, offer me the name of a personal friend/family member/your own doctor that works with cancer patients so that I can have another name to add to my arsenal.
The Dumb Questions:
I kid you not, I'm not making any of these up.
"How did you catch it?" Repeatedly asked. My friend that survived testicular cancer has the best response: "Seriously? Toilet seats. Always use the ass gasket, otherwise you'll end up with testicular cancer. Tell your friends." Guess what people, you don't "catch" cancer. Just saying...
"Are you a smoker?" Top of the list for lung cancer patients. First, I have to say, think about what you are going to say when you hear the answer to this question, regardless of what it might be. If he/she says "no" are you going to say, "sucks to be you"? If they say, "yes" are you actually going to say "then I guess you should have expected it?" Honestly...this kind of falls into the "How did you catch it?" question above.
"What are your chances of survival/recovery?" "What does this mean for your kids?" "Are your kids going to get it?" Most cancer patients don't want to talk about statistics and percentages as it pertains to whether they are going to recover or not. Honestly, the "odds" of my 5 year recovery is pretty crappy all things considered (somewhere in the low 60% range), but I'd prefer not to think about that as it doesn't do me any good, thanks for asking. And I'd prefer not to have a long conversation about what this means for my kids, or their genetic makeup, because it's scary enough thinking about my own cancer. And I was trying not to think about my kids having cancer, but thanks for putting that out there because I needed one more thing to stress about.
An extreme example of compare and contrast: "I was going to get my hair cut during my recovery period for reconstruction. The well meaning hair stylist compared my reconstruction (from a mastectomy) to her 20-something friend who had a "boob job" because she was tired of her "A" cup." To this I must just say, use your brain people...use your brain...
Now that I've probably offended every last one of you, let me reiterate, that is NOT MY INTENT. You are all good people! You say and do the right things. My (our) hope is just to provide you with an insight into what your questions mean to us.
So, what can you say? Or what should you say?
"I am so sorry you are going through this."
"I am here for you." (But don't say it if you really aren't prepared to be there. Or be very specific with what support you are able to provide. For example, "I can drive your kid(s) to soccer practice" or "I can run to the grocery story for you" or "Do you need a ride to the doctor?").
"Whatever you need..." (Again, see above. If you're really willing to clean my house, offer it up. If you're happy to have my kids spend the night, please take them. If you'd like to organize meals from friends and neighbors, that'd be lovely).
"What do you need?"
"How is your day going?"
"Do you want to talk about it? Or not?" (I have friends that are very good at NOT talking about cancer at all when we are together...it's a great opportunity just to be a normal person for awhile. This is something we ALL want).
"I am at the store, do you need anything?"
"Is there anything I can do to help?"
First, before you take offense to this particular post, I want to say that it probably wasn't aimed at you, my dear friends and family. For the most part, everyone has been wonderful to me, and nothing but supportive, and always quick to offer help when I most needed it. And this is not a "rant" against stupidity (although, it unfortunately exists..just wait for my post about the DMV), but rather a way to help all of us be more considerate when talking with cancer patients.
When you are a cancer patient (or probably any person suffering from a long-term illness or life-altering disease), you get asked questions...a lot of questions...all the time. And quite often, they are the same questions over and over and over. This is really because most people are so caring and want to help/understand.
If you are lucky enough to know people that have traveled the cancer journey before you, or with you, or even after you, you tend to bond with these people in a way that I cannot fully explain. Sometimes, they seem to be the only ones to know exactly the right words of encouragement to give you when you feel like crap. So you get together for coffee, or you chat on Facebook, and you feel like you can laugh with these people in a way that others can't quite grasp. And while you're chatting, you discover that you all have the same "pet peeves" when it comes to things that people, well-meaning or not, say to you.
I asked all my "cancer peeps" (yes, that really is how I think about them) for their input on this post. Our roll call includes: Hodgkin's Lymphoma, Testicular, Lung, Thyroid, and 7 Breast Cancers (6, plus me)...so 11 people total. Five of us went to the same high school and are basically all the same graduating class so I wonder if I should do a study of what was in the drinking fountains there and how many of us there really are and whether it's higher or lower than the average. 1 is family, 1 is the mom of a high school friend, and the remaining 4 are friends I have met along the way through school, kids' schools, and sports. One has been "lucky" enough to go through cancer twice, 15 years apart. (UGH! Cannot even imagine...she's my hero). Some are newly diagnosed, some just starting treatment, some just finished treatments, some are one year post-treatments, and a few are lucky enough to have hit their 5 year cancer-free mark.
Here are the questions that I asked: "Do you have one, two, or even ten things that bug(ged) you that people, well-meaning or not, say/said to you? Or things you just got tired of hearing? Whether it was friends, family, acquaintances, or doctors...I'd love your thoughts." (Now, please note, at the time I'm writing this, a couple of people had not yet responded because they are likely enjoying their summer and not waiting around for emails from me. I will update with their responses as needed).
These people were very thoughtful with their responses, and all agreed that for the most part people were supportive and wonderful, as I've already mentioned. Many of us think it's possible we have even been guilty of some of these "no-no's" at one time or another. Several were worried that it might seem like they are nit-picking, but I assured them they were not. I culled the responses and have included our advice to you...in no particular order...here's what bugs us the most...(direct quotes are marked, otherwise I've compiled and paraphrased).
Please do not be one of these people:
"The One Up"
Every single one of us remarked about this. These are the well-meaning people who want to tell you a story about someone they know who has cancer "much worse" than you do, and how said person is soldiering on. If they can do it, so can you. I'm pretty sure this is designed to "buck up" our spirits. Unfortunately, it has the opposite effect. Here's the thing, we all know someone who has it much worse than we do...we see them EVERY TIME we go in for treatment. (For me, it was the lady next to me, pregnant with twins, who was getting chemo. Yep, my Stage 3 Angry Cancer didn't seem so bad that day). BUT, whether we are in the throws of treatment, or about to start some scary phase of treatments, or even desperately trying to recuperate from the last round of chemo, WE FEEL BAD. And we have a right to feel bad because "it just sucks to be in the middle of it." I'm sorry that your neighbor's mother-in-law/friend from high school/second cousin, twice removed has it worse, but I only have enough energy to care about me, and all your comments do are make me feel bad about myself for being a wuss.
"The One Up, part 2"
My cancer peeps are "young" in the grand scheme of things. Hearing about how your grandma had breast cancer when she was in her 80's does nothing for us. We have young families, jobs, and would like to think that we're pretty active go-getters. "I know they were trying to be well-meaning but their mothers were 70+ when they were diagnosed, not 42! Come on, I have young kids and a whole life." Not to mention the fact that cancer medicine has advanced GREATLY in the last few decades, so these experiences, while sad, are completely irrelevant to our situation.
"Compare and Contrast"
Please do not compare your health "crises" and experiences with mine. Now, I'm the first to raise my hand and say that I'm sure I do this with my cancer peeps (but we're allowed, because we try and garner info from each other about what the unknown is like), and I apologize to anyone I've ever done this to in the past, and know I'm working really hard NOT to do this ever again. But please do not talk about your benign lump or your hazy mammogram results or how it was a scary couple of days for you thinking you might have cancer, but thank God you don't. Now, if I'm joking about my hideous MRI, and you've had one also, please, feel free to commiserate about that. But your experiences are not mine. Which leads me to...
"I Know How You Feel"
NO YOU DON'T. Even if you've had the same drugs, and the same doctors, and the same diagnosis. You have no idea how I feel. Every time I hear this from someone (usually a random stranger out in the community, or someone over the phone I have to deal with when "discussing" insurance...or the DMV), I want to lose it. If you take nothing else to heart from this post, please do not ever say these words again.
"God's Plan"
I am the first to admit that I'm not the most active church-goer out there, but I definitely believe in God, and pray for strength a lot. However, I'd like to think that he is not a mean and vindictive god who would want me to feel this terrible. Telling me my cancer is "God's plan for me and is my cross to bear" just doesn't work for me because I disagree. Perhaps, years from now, it might be appropriate to have a discussion about how having cancer changed my life/life plan, but not now. Not while I'm right in the middle of it. All this will do is make someone stop believing in God, or start hating God.
"God's Plan, part 2"
Or, "But you're such a good person." Again, cancer sucks. Random, stupid, and angry are all words that I use to describe it. Believe me, I've given quite a bit of thought to "wow! You'd have thought I would have some good karma points stored up." This is okay for me to think...but not at all helpful for you to say.
"Be Positive"
This is kind of "God's Plan, part 3" in my opinion. Yes, I think that attitude is a key component, and my cancer peeps completely agree. However, telling someone "attitude is everything" or "if you just have a positive attitude, it will be okay" is JUST NOT TRUE. I've been told I have a pretty remarkable attitude considering what I've been through, and they keep finding cancer every time they do a surgery or a scan. And then I get pissed and hate everyone. And then I feel guilty for not having a positive attitude. Lather. Rinse. Repeat. Attitude helps, but a positive attitude is not going to cure you. It is okay to feel bad and a cancer patient needs that permission not to be happy all the time.
"How Are You Feeling?"
Especially when it includes that look of pity in your eyes. This was one of my personal pet peeves and I'm glad that I wasn't the only one. I felt I was jinxing something if I answered, "not too bad." Wow, if that isn't asking the chemo gods to rain holy hell down on you, I don't know what is?! And if the reverse is true and I'm not doing well, you don't really want to know all the gory details, so I just wouldn't tell you. The sentiment is nice, but this is just not the right question (see below for what to ask instead).
"You Look Good"
The hell I do. What you really mean (ie: what you're amazed about) is that I don't look like a Holocaust survivor, which is how you think a cancer patient should look thanks to movies/TV/your grandma's cancer experience from the 1970s. Even if, God forbid, we really do look better than we've ever looked in our lifetime, we feel LIKE CRAP. We don't recognize the person we see in the mirror. Tell me I look good bald, that eyelashes are overrated, that my coloring seems good today...find something meaningful and specific...and maybe even funny. Anything other than something that sounds canned, and is really just a well-meaning lie. In this same category are "someone as young and healthy as you" which I hear from my doctors all the time. I HAVE CANCER...I am not healthy. Pick different words.
"The Health Nut"
This one was a hot button for us. We've all run into the person who says "I eat this or don't eat that" or "how they never drink milk because of hormones and all the other things they are careful not to eat, blah, blah, blah." As one friend put it so eloquently, "Helpful? No. Interesting? Hardly. Even if it were, it's a bit late don't you think?" Another said, "that's great for them but 1) I have already been DIAGNOSED with cancer and don't need any guilt on health habits and 2) HELLO, I am triple negative - hormones aren't a factor in my type of breast cancer. *SIGH*"
"The Cures"
Again, I fully believe that curing my cancer is a process and should involve a lot of different elements like traditional and non-traditional therapies. But why must we feel the need to perpetuate the chain letter email that if we just eat 12 pounds of bananas every 3rd Thursday we will be cured, and here's the true-life case of the one person, 300 years ago, that it happened to. Please don't get me started on what I think of these "cures" (magic potions) and whether they actually work. One of my peeps shared how a well-meaning person sent an article about "willing away the cancer through positive body-talk." Now, if you had my EXACT type of diagnosis, and you thumbed your nose at Western medicine and ate those bananas and you were actually cured, then sure, let's talk. I'm open to incorporating bananas into my diet. But I'm going to make it a PART of my treatments, and not rely solely on them...or any type of treatment for that matter. If you really want to find a way to help me get better, offer me the name of a personal friend/family member/your own doctor that works with cancer patients so that I can have another name to add to my arsenal.
The Dumb Questions:
I kid you not, I'm not making any of these up.
"How did you catch it?" Repeatedly asked. My friend that survived testicular cancer has the best response: "Seriously? Toilet seats. Always use the ass gasket, otherwise you'll end up with testicular cancer. Tell your friends." Guess what people, you don't "catch" cancer. Just saying...
"Are you a smoker?" Top of the list for lung cancer patients. First, I have to say, think about what you are going to say when you hear the answer to this question, regardless of what it might be. If he/she says "no" are you going to say, "sucks to be you"? If they say, "yes" are you actually going to say "then I guess you should have expected it?" Honestly...this kind of falls into the "How did you catch it?" question above.
"What are your chances of survival/recovery?" "What does this mean for your kids?" "Are your kids going to get it?" Most cancer patients don't want to talk about statistics and percentages as it pertains to whether they are going to recover or not. Honestly, the "odds" of my 5 year recovery is pretty crappy all things considered (somewhere in the low 60% range), but I'd prefer not to think about that as it doesn't do me any good, thanks for asking. And I'd prefer not to have a long conversation about what this means for my kids, or their genetic makeup, because it's scary enough thinking about my own cancer. And I was trying not to think about my kids having cancer, but thanks for putting that out there because I needed one more thing to stress about.
An extreme example of compare and contrast: "I was going to get my hair cut during my recovery period for reconstruction. The well meaning hair stylist compared my reconstruction (from a mastectomy) to her 20-something friend who had a "boob job" because she was tired of her "A" cup." To this I must just say, use your brain people...use your brain...
Now that I've probably offended every last one of you, let me reiterate, that is NOT MY INTENT. You are all good people! You say and do the right things. My (our) hope is just to provide you with an insight into what your questions mean to us.
So, what can you say? Or what should you say?
"I am so sorry you are going through this."
"I am here for you." (But don't say it if you really aren't prepared to be there. Or be very specific with what support you are able to provide. For example, "I can drive your kid(s) to soccer practice" or "I can run to the grocery story for you" or "Do you need a ride to the doctor?").
"Whatever you need..." (Again, see above. If you're really willing to clean my house, offer it up. If you're happy to have my kids spend the night, please take them. If you'd like to organize meals from friends and neighbors, that'd be lovely).
"What do you need?"
"How is your day going?"
"Do you want to talk about it? Or not?" (I have friends that are very good at NOT talking about cancer at all when we are together...it's a great opportunity just to be a normal person for awhile. This is something we ALL want).
"I am at the store, do you need anything?"
"Is there anything I can do to help?"
Saturday, April 27, 2013
Care Package for a Chemo Patient
Since I have been diagnosed, several people I know have also been diagnosed with cancer. And it is sad and scary for everyone involved, trust me. Now, in most cases, everyone has been able to get a clean bill of health after only needing surgeries to remove the offending cancer. They can avoid the entire chemo and radiation journey that I'm on (the joys of getting diagnosed with stage 3 Angry Cancer). I am so happy anytime someone gets a clean bill of health!!! And for those of you that have to follow me down this chemo/radiation journey, I am here for you!
However, this has me thinking, what would I do for you or get you if you had to go through chemo? What would I want you to have? This is really an extension of the question of I get asked a lot: What do you need/want? So, I decided to put together this "care package" of things that would help a chemo patient out, based on what I needed the most.
(1) I would take charge of setting up a care calendar for you. Meals? Groceries? Rides? Transportation for your kids? I might need to ask you for email addresses and what your family likes to eat, but it'll be set up and ready to go on a moment's notice. Please don't cook ever again!
(2) Straws and grown-up sippy cups (you know, those cups you can buy from Starbucks with the lid and straw). Seriously, you need straws, I can't explain how vital they are. It's easier to lay in bed and drink if you have lids and straws. And I'll get you at least 3 of the cups...one for water, one for juice, one for ginger ale...because you will want all 3 at the same time.
(3) A case of bottled water for your car. Chemo makes you SO thirsty. Not kidding, there will come a day when you are headed to the doctor, or to brave the germ-infested masses at the store, and you will be dying of thirst! And then you will think I'm a genius.
(4) A goody bag with the new essentials for your purse/car/bedroom (yes, I really do have 3 sets of of everything): Chapstick, Kleenex, hand sanitizer, and lotion (all unscented, of course).
(5) Fuzzy socks (with grippy feet) and nice soft hats. Again, when you need these, you will think I'm a genius. Note to self (and anyone out there using this as a shopping list): KEEP THE TAG ON THE HAT so that the patient will know where to go to get more if it becomes their new favorite clothing item!
(6) A soft blanket or shawl, perhaps hand-crafted with love. Unfortunately, I am not crafty so I would have to get someone to do it for me. I have received several of these and I love them all! And appreciate the ones that were made during a prayer circle/meeting. You can feel the love.
(7) Biotene makes a line of great mouthwashes, toothpastes, mouth gels, etc. Trust me when I say, you will need it all!
(8) Really good salt...the fancy flavored sea salt kind...and lots of it. And probably some awesome spices. I'll even throw in a little baking soda with it and tell you how to keep from losing your taste buds like I did.
(9) I will share my meds with you if your doctor doesn't give you the good stuff. But since you will probably get all kinds of good stuff, I'll make sure to bring you all the boring over-the-counter stuff they forget to mention that you need to get through it: Tylenol, Claritin, Colase, Senakot, Queasy Pops, a variety of stuff to help you sleep...all kinds of fun.
(10) Trashy magazines. As much as I love to read, sometimes my brain isn't functioning and I just want to flip through People or Us magazine. And then not worry if I don't remember reading it.
(11) Restaurant gift cards for you and your family to use. Trust me, even if you don't care, there will be a day where your family desperately wants to go out to eat.
(12) iTunes gift cards. I don't know if you have an iPod, iPad, Kindle app, whatever. But you will need mind-numbing games to play, music to listen to, books you can read without carting around a library, audiobooks in case your eyes go to hell like mine did. Thank you Apple.
(13) I will tell you NOT to shave your head before chemo starts. Sure, go ahead and cut it short, but don't shave it off in dramatic fashion like you see in movies and TV shows. Because if you have hair growing in/stubble when your hair really does start to fall out, your head will hurt. Not any fun.
(14) I will send you cards via snail mail just because. I currently have 4 or 5 people that do this and it is so fun to get these cards. Whether they are sunny, sweet, or funny, it is so nice to receive them. And SO much better than the bills that fill up the mailbox.
(15) I will pay for a subscription to Netflix or Hulu or whatever you want. Trust me, you will become infinitely familiar with the television schedule and you will start to hate every channel.
(16) When you figure out which day(s) is your "bad" day, holler. I will take your kids out of the house (because you might find them to be loud and smelly). Or I'll come over and take care of you and send your family to my house to hang out. Or I'll kick everyone out of your house, shut your bedroom door so you can have peace and quiet, and sit downstairs and read a book and wait for you to need something. Whatever you want that day to look like. I didn't want anyone bothering me because they smelled, but I needed someone in my house to bring me drinks. And I was lucky to have friends and family who took my daughter each weekend so she never really had to know what it looked like when I felt like that. (The teenage boy was often so oblivious that he didn't even notice mom hadn't come out of the bedroom for days).
(17) Every now and then I will ask you what you need. And please, speaking from personal experience, TELL ME. Do you need groceries? Your bathrooms cleaned? A massage (god, not from me, but I'll take up a collection and make sure you get one)? Soup? Ginger Ale? To go for a walk? To get out of the house? Go to a movie? Talk about how crappy life is? Not talk about how crappy life is? Bring. It. On.
This is just some things that I found I needed...and was lucky enough to have people taking care of me. Happy to pay it forward.
However, this has me thinking, what would I do for you or get you if you had to go through chemo? What would I want you to have? This is really an extension of the question of I get asked a lot: What do you need/want? So, I decided to put together this "care package" of things that would help a chemo patient out, based on what I needed the most.
(1) I would take charge of setting up a care calendar for you. Meals? Groceries? Rides? Transportation for your kids? I might need to ask you for email addresses and what your family likes to eat, but it'll be set up and ready to go on a moment's notice. Please don't cook ever again!
(2) Straws and grown-up sippy cups (you know, those cups you can buy from Starbucks with the lid and straw). Seriously, you need straws, I can't explain how vital they are. It's easier to lay in bed and drink if you have lids and straws. And I'll get you at least 3 of the cups...one for water, one for juice, one for ginger ale...because you will want all 3 at the same time.
(3) A case of bottled water for your car. Chemo makes you SO thirsty. Not kidding, there will come a day when you are headed to the doctor, or to brave the germ-infested masses at the store, and you will be dying of thirst! And then you will think I'm a genius.
(4) A goody bag with the new essentials for your purse/car/bedroom (yes, I really do have 3 sets of of everything): Chapstick, Kleenex, hand sanitizer, and lotion (all unscented, of course).
(5) Fuzzy socks (with grippy feet) and nice soft hats. Again, when you need these, you will think I'm a genius. Note to self (and anyone out there using this as a shopping list): KEEP THE TAG ON THE HAT so that the patient will know where to go to get more if it becomes their new favorite clothing item!
(6) A soft blanket or shawl, perhaps hand-crafted with love. Unfortunately, I am not crafty so I would have to get someone to do it for me. I have received several of these and I love them all! And appreciate the ones that were made during a prayer circle/meeting. You can feel the love.
(7) Biotene makes a line of great mouthwashes, toothpastes, mouth gels, etc. Trust me when I say, you will need it all!
(8) Really good salt...the fancy flavored sea salt kind...and lots of it. And probably some awesome spices. I'll even throw in a little baking soda with it and tell you how to keep from losing your taste buds like I did.
(9) I will share my meds with you if your doctor doesn't give you the good stuff. But since you will probably get all kinds of good stuff, I'll make sure to bring you all the boring over-the-counter stuff they forget to mention that you need to get through it: Tylenol, Claritin, Colase, Senakot, Queasy Pops, a variety of stuff to help you sleep...all kinds of fun.
(10) Trashy magazines. As much as I love to read, sometimes my brain isn't functioning and I just want to flip through People or Us magazine. And then not worry if I don't remember reading it.
(11) Restaurant gift cards for you and your family to use. Trust me, even if you don't care, there will be a day where your family desperately wants to go out to eat.
(12) iTunes gift cards. I don't know if you have an iPod, iPad, Kindle app, whatever. But you will need mind-numbing games to play, music to listen to, books you can read without carting around a library, audiobooks in case your eyes go to hell like mine did. Thank you Apple.
(13) I will tell you NOT to shave your head before chemo starts. Sure, go ahead and cut it short, but don't shave it off in dramatic fashion like you see in movies and TV shows. Because if you have hair growing in/stubble when your hair really does start to fall out, your head will hurt. Not any fun.
(14) I will send you cards via snail mail just because. I currently have 4 or 5 people that do this and it is so fun to get these cards. Whether they are sunny, sweet, or funny, it is so nice to receive them. And SO much better than the bills that fill up the mailbox.
(15) I will pay for a subscription to Netflix or Hulu or whatever you want. Trust me, you will become infinitely familiar with the television schedule and you will start to hate every channel.
(16) When you figure out which day(s) is your "bad" day, holler. I will take your kids out of the house (because you might find them to be loud and smelly). Or I'll come over and take care of you and send your family to my house to hang out. Or I'll kick everyone out of your house, shut your bedroom door so you can have peace and quiet, and sit downstairs and read a book and wait for you to need something. Whatever you want that day to look like. I didn't want anyone bothering me because they smelled, but I needed someone in my house to bring me drinks. And I was lucky to have friends and family who took my daughter each weekend so she never really had to know what it looked like when I felt like that. (The teenage boy was often so oblivious that he didn't even notice mom hadn't come out of the bedroom for days).
(17) Every now and then I will ask you what you need. And please, speaking from personal experience, TELL ME. Do you need groceries? Your bathrooms cleaned? A massage (god, not from me, but I'll take up a collection and make sure you get one)? Soup? Ginger Ale? To go for a walk? To get out of the house? Go to a movie? Talk about how crappy life is? Not talk about how crappy life is? Bring. It. On.
This is just some things that I found I needed...and was lucky enough to have people taking care of me. Happy to pay it forward.
Wednesday, April 24, 2013
In Which I am THANKFUL!
It is now time to interrupt this blog to say a big THANK YOU to all of you that have organized and contributed to the various fundraisers.
It is amazing to see everyone come together to support us through this difficult time and want to help out. Goodness knows that we can sure use it...it's the medical bills that are actually going to be the death of me, I know it. Note to self: never get sick in October again. You get to pay for two calendar year's insurance deductibles. Double the bills. So fun.
Many people donated anonymously, which I respect, but it's kind of annoying because I can't thank you in person! And there were so many people that contributed, that I really can't write personal thank you notes anytime soon, so this will serve as your THANK YOU!!
Some highlights:
My dad's business clients/friends who wanted to give him a gift for Christmas, and the best gift they could think of was pooling their donations to support me.
The friend/fellow teacher who started the online fundraiser so it could reach people far and wide.
The former student who organized a benefit concert evening.
The current and former students who donated their own money to the cause.
Our "soccer family" who are always there for us.
And the list goes on and on and on. Friends, family, neighbors, students, school families, community members, and people I don't even know...
Seriously, you need to know how grateful I am! I could never express my gratitude enough. It truly means the world to me and my family. It may seem like a small gesture to you, but it has allowed us to breathe a little easier without having to worry about how we are going to pay ALL THESE BILLS that have accumulated these last six+ months. This entire journey and everything it entails is so stressful, but this has alleviated one component of it. Love to everyone! And if the daughter could bake you all cupcakes, she would.
It was so amazing to get the check from the online fundraiser in the mail a few days ago. Now to tackle the ten foot tall pile of bills that I've been shoving in a box unopened. And here's hoping there won't be any major monetary surprises in the months to come. Fingers crossed!
It is amazing to see everyone come together to support us through this difficult time and want to help out. Goodness knows that we can sure use it...it's the medical bills that are actually going to be the death of me, I know it. Note to self: never get sick in October again. You get to pay for two calendar year's insurance deductibles. Double the bills. So fun.
Many people donated anonymously, which I respect, but it's kind of annoying because I can't thank you in person! And there were so many people that contributed, that I really can't write personal thank you notes anytime soon, so this will serve as your THANK YOU!!
Some highlights:
My dad's business clients/friends who wanted to give him a gift for Christmas, and the best gift they could think of was pooling their donations to support me.
The friend/fellow teacher who started the online fundraiser so it could reach people far and wide.
The former student who organized a benefit concert evening.
The current and former students who donated their own money to the cause.
Our "soccer family" who are always there for us.
And the list goes on and on and on. Friends, family, neighbors, students, school families, community members, and people I don't even know...
Seriously, you need to know how grateful I am! I could never express my gratitude enough. It truly means the world to me and my family. It may seem like a small gesture to you, but it has allowed us to breathe a little easier without having to worry about how we are going to pay ALL THESE BILLS that have accumulated these last six+ months. This entire journey and everything it entails is so stressful, but this has alleviated one component of it. Love to everyone! And if the daughter could bake you all cupcakes, she would.
It was so amazing to get the check from the online fundraiser in the mail a few days ago. Now to tackle the ten foot tall pile of bills that I've been shoving in a box unopened. And here's hoping there won't be any major monetary surprises in the months to come. Fingers crossed!
Sunday, April 21, 2013
Another Reason I Miss Vacation
Vacation was so relaxing that I just want to go back. And one of the main reasons is the food, and that other people were cooking it for me.
Keith has been reffing and/or coaching every night of the week (and that's actually not an exaggeration), and nothing really excites me about eating right now, so when dinnertime rolls around and the kids ask, "What's for dinner?" I usually say "nothing." Which is a joke, but is how I feel. I'm tired by that point in the day, I don't really want to eat anything myself except Raisin Bran Crunch, and I sure would prefer not to stand up and cook something.
But, since I obviously don't have Bobby Flay on speed dial, we are getting by. We were getting meals delivered throughout this process, but I let the calendar lapse with spring break coming up because I knew we were going to be gone and didn't want a bunch of leftovers sitting in the fridge.
Thinking that I might have to get that going again. Or I might suffer through these last few weeks of chemo and wait to see if I'll need to throw myself on the mercy of friends during radiation instead.
It's these kind of things that get you down and make you feel like a sick person. When you just don't have the energy to take care of your family. Maybe I will have to write Bobby Flay a note...
Keith has been reffing and/or coaching every night of the week (and that's actually not an exaggeration), and nothing really excites me about eating right now, so when dinnertime rolls around and the kids ask, "What's for dinner?" I usually say "nothing." Which is a joke, but is how I feel. I'm tired by that point in the day, I don't really want to eat anything myself except Raisin Bran Crunch, and I sure would prefer not to stand up and cook something.
But, since I obviously don't have Bobby Flay on speed dial, we are getting by. We were getting meals delivered throughout this process, but I let the calendar lapse with spring break coming up because I knew we were going to be gone and didn't want a bunch of leftovers sitting in the fridge.
Thinking that I might have to get that going again. Or I might suffer through these last few weeks of chemo and wait to see if I'll need to throw myself on the mercy of friends during radiation instead.
It's these kind of things that get you down and make you feel like a sick person. When you just don't have the energy to take care of your family. Maybe I will have to write Bobby Flay a note...
Saturday, March 9, 2013
My Katy Perry Wig and I Make The Paper
Why yes, that is me rockin' my Katy Perry wig in the local paper! You have to check out the article from the most recent Redmond Reporter! Yes, it's my photo, but it also highlights some pretty amazing people and how they're helping out during this whole process. Great article!!
And if you get a hard copy of the actual paper could you save it for me? Thanks!
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