Yesterday marked the end of radiation, week 3,000...or something like that.
Lather. Rinse. Repeat.
Or, as one friend put it, "your life is kinda like Groundhog's Day, isn't it?" Yep! That's exactly it. No kidding, it is so weird to live the same day over and over and over. I kinda feel Bill Murray's pain now.
The only remarkable things about radiation this week were:
(1) the day that ALL the handicapped spots were taken in the parking lot. This was definitely a predictor of how slow things were going to be that day. I knew we were in trouble from the get-go...
(2) at the weekly visit with the doctor, he was stunned at how well my skin is doing. Holy crap! You mean something has actually gone better than expected? What?! That is completely unheard of for me, so I'll take it!! KNOCK ON WOOD that it holds up through the remaining treatments. And a thank you to the gene pool that allowed me to have good skin I guess.
(3) I think it's possible that I am finally getting over the PLAGUE that I caught last week. It's been almost TWO WEEKS now. UGH! Chalking this one up to continued compromised immunity. Looking forward to not being so susceptible to germs...some day...
(4) I've been really tired this week. So. Very. Tired. Had figured this was coming. Doctor thinks it might be low blood counts, but decided to chalk it up to the aforementioned plague (see #3). He will be more concerned if I'm still dragging at the end of next week.
So, I think I can see the light at the end of this radiation tunnel. Three more weeks...if I've done the math right (which it's possible I haven't because I'm still stupid from chemo).
Saturday, August 31, 2013
Thursday, August 22, 2013
Here's What's Up
Tired of saying "radiation, radiation, radiation" and repeating on an endless loop, I thought that I would just jot down some notes about what it's been like to be me the past few weeks.
(1) I need MUSIC MONDAY suggestions ASAP! Comment here...early and often...please!
(2) We did the biggest back-to-school power-shop EVER over the weekend. Because I cannot be far away from my favorite radiation machine Monday through Friday, we had to cancel the annual Oregon coast/beach camping/shopping extravaganza. Instead, it became a blitzkrieg event, where we powered through every store possible in the shortest amount of time, barely stopping to eat. While it was exhausting (no, I'm never going to do this again), it was actually really fun. At dinner on Saturday night (at like 9:30pm because we just couldn't stop shopping) the four of us LAUGHED. A LOT. AT EVERYTHING. And I don't even remember most of what was so funny (except I remember some of it had to do with the fact that I'm not sure English is my children's first language. Did teenage boy really ask, what's a verb?). But it just felt good to laugh.
(3) I went in to work on Monday (because I'm dumb...I know). It was just for a couple of hours, and I didn't really do anything but stare and feel overwhelmed by the amount of work to be done before the start of school (somehow my library became a dumping ground over the summer). And how was I rewarded for this? By getting sick. So. Very. Sick. Damn middle school germs that obviously linger FOREVER. I feel like complete crap now. I get it...compromised immunity + school germs = sick. (Of course, I went up there again today. I figured, what the heck, I'm already sick. I know. I told you I was dumb).
(4) Before I got sick and wanted to kill people because of this awesome sore throat and headache, I was starting to feel fatigued from radiation. I had a good 3 hour nap last Friday. And another one a few days before that. I haven't read a book in 4 days because I can't stay awake.
(5) I hate my hair. Everyone loves it, and I'm not saying that it's horrible. But the color is all wrong and the curls are driving me to drink. When I look in the mirror I do not see myself. I have decided to keep it short for awhile. And wear the Katy Perry wig for school pictures for the rest of my life.
(6) Chemo is the gift that just keeps giving. I am starting to make plans for the fall and eventually returning to work. Every day I think about what I can no longer do and how it will impact me going back to work. I've decided to make this a post all on it's own...stay tuned.
(7) Before I caught the plague, I was able to get out and exercise a little bit. I was doing pretty good and trying to get out every day. Until about a week ago. And then I got tired. And then I got sick. Hoping to pick it back up again by the weekend. However, last 10 pounds still not coming off and the clothes still don't fit. Super frustrating.
(8) Really missed not going ANYWHERE this summer. Radiation puts a crimp in your social calendar, that's for sure. I feel like I deserve a vacation when this is all done!
(9) To end on a positive note, my former student Nolan has reached his fundraising goal and will now be able to walk on the 3Day (here in Seattle in September...just a few weeks from now). His mom Deb, and another friend Julia also reached their goals, so I'm hoping to be able to get out and cheer them on. Who's with me?? Thanks to EVERY ONE OF YOU that donated to Nolan (or anyone else that is participating in the walk). It is terrific to see so many of my friends on his "supporters" roll call! And thanks to all of you that are supporting anyone participating in events that raise money for cancer causes...Obliteride, Relay for Life, etc. And those of you walking/running/riding for a cure. (Check out one of my students who walked this spring in a Relay for Life event...go Abbey!)
(8) Really missed not going ANYWHERE this summer. Radiation puts a crimp in your social calendar, that's for sure. I feel like I deserve a vacation when this is all done!
(9) To end on a positive note, my former student Nolan has reached his fundraising goal and will now be able to walk on the 3Day (here in Seattle in September...just a few weeks from now). His mom Deb, and another friend Julia also reached their goals, so I'm hoping to be able to get out and cheer them on. Who's with me?? Thanks to EVERY ONE OF YOU that donated to Nolan (or anyone else that is participating in the walk). It is terrific to see so many of my friends on his "supporters" roll call! And thanks to all of you that are supporting anyone participating in events that raise money for cancer causes...Obliteride, Relay for Life, etc. And those of you walking/running/riding for a cure. (Check out one of my students who walked this spring in a Relay for Life event...go Abbey!)
Wednesday, August 21, 2013
Radiation is Monumentally BORING!
And a giant time suck!
And really cutting into my social life!
Every day the same old thing. Blah, blah, blah.
Thank goodness for the friends that are driving me every day. This does actually make it quite a bit more enjoyable than it probably should be. Entirely more fun than a girl should be allowed to have. I highly recommend this as a strategy to anyone who has the misfortune to have to go through radiation. Conscript friends into coming with you. A different one each day. It's the most creative way I can think of to keep in touch. And honestly, you don't feel quite so lonely. And then you have witnesses to the craziness that is your life!
And as for radiation itself, well, I guess not every day is boring.
There was "take you grandparent to radiation" day. That REALLY put a crimp in my day when it was running 45 minutes behind schedule.
There was the day when I decided to mention some interesting symptoms I was having...it went something like this:
Me: So, I'm having some shortness of breath. I'm totally used to this with chemo, but thought it was better, and now it seems to be back. And since you're radiating my lung and all, I thought I'd bring it up.
Doc: Hmmmm, that's unusual and shouldn't be happening. We could send you for X-rays? Blood counts? Appointment with chemo doc?
Me: yeah, I think I'm fine. Lets chalk it up to chemo, the gift that keeps on giving. Gotta run, bye!
(Because the minute anyone mentions X-rays, scans, blood draws, or more appointments I have learned to RUN from the building).
There was the day when the computers weren't synch-ing properly (the one the techs were using and the one that controls the machine) and everything went soooo slooooowly. Kinda reminded me of being at school.
And then there was today, which started off great (sarcasm) when the tech said, "Hmmmm, that's interesting." Yeah, when they have to page the physicist on site to come check out the "weird" thing the machine is doing, you know that you are in for some fun times.
Just so you know, I am going to be doing some "Take Care of the Caregiver" guest posts over these last many weeks of radiation so you don't have to hear me continually say: radiation...blah, blah, blah...
Stay tuned for those! I'm very excited for you to hear what it's like to be a caregiver.
And really cutting into my social life!
Every day the same old thing. Blah, blah, blah.
Thank goodness for the friends that are driving me every day. This does actually make it quite a bit more enjoyable than it probably should be. Entirely more fun than a girl should be allowed to have. I highly recommend this as a strategy to anyone who has the misfortune to have to go through radiation. Conscript friends into coming with you. A different one each day. It's the most creative way I can think of to keep in touch. And honestly, you don't feel quite so lonely. And then you have witnesses to the craziness that is your life!
And as for radiation itself, well, I guess not every day is boring.
There was "take you grandparent to radiation" day. That REALLY put a crimp in my day when it was running 45 minutes behind schedule.
There was the day when I decided to mention some interesting symptoms I was having...it went something like this:
Me: So, I'm having some shortness of breath. I'm totally used to this with chemo, but thought it was better, and now it seems to be back. And since you're radiating my lung and all, I thought I'd bring it up.
Doc: Hmmmm, that's unusual and shouldn't be happening. We could send you for X-rays? Blood counts? Appointment with chemo doc?
Me: yeah, I think I'm fine. Lets chalk it up to chemo, the gift that keeps on giving. Gotta run, bye!
(Because the minute anyone mentions X-rays, scans, blood draws, or more appointments I have learned to RUN from the building).
There was the day when the computers weren't synch-ing properly (the one the techs were using and the one that controls the machine) and everything went soooo slooooowly. Kinda reminded me of being at school.
And then there was today, which started off great (sarcasm) when the tech said, "Hmmmm, that's interesting." Yeah, when they have to page the physicist on site to come check out the "weird" thing the machine is doing, you know that you are in for some fun times.
Just so you know, I am going to be doing some "Take Care of the Caregiver" guest posts over these last many weeks of radiation so you don't have to hear me continually say: radiation...blah, blah, blah...
Stay tuned for those! I'm very excited for you to hear what it's like to be a caregiver.
Tuesday, August 20, 2013
The New and Improved Me
I realized the other day (or maybe a month ago and I immediately forgot again until just the other day) that I had only posted recent pictures pics of the "new me" on my Facebook page.
So, I thought I would post a few here to keep you updated on what I'm looking like.
(1) What my nails look like still if I let them grow out. I'm hoping that you can tell from this picture how the longer they get, the less they are attached. So then I have to cut them short...and then when they grow out the process starts all over again. So much for that career as a hand model.
(2) The Sharpie drawing all over me for radiation simulation. The blue dashes mark the entire area that is radiated (it goes from sternum to armpit, collar bone to below my left breast). The black dot in the middle of the "cross" that you can see is a permanent tattoo...and there's a matching one in my armpit. Damn. I was really hoping for something much cooler. At least an "X" marks the spot kind of tattoo. That beautiful scar that you can see is my surgery scar...about half of it. And there's a matching one of those in my armpit also.
(3) The new me, with my awesome pixie haircut. When your hair initially comes in after chemo it's a combination of straw and cat hair. I'm not sure how else to describe it, but it HAD to come off almost immediately. Thank goodness for friends who are hairstylists! Next stop, maybe some color because this current one is all kinds of NOT ME. I'm thinking purple...or Katy Perry blue.
So, I thought I would post a few here to keep you updated on what I'm looking like.
(1) What my nails look like still if I let them grow out. I'm hoping that you can tell from this picture how the longer they get, the less they are attached. So then I have to cut them short...and then when they grow out the process starts all over again. So much for that career as a hand model.
(2) The Sharpie drawing all over me for radiation simulation. The blue dashes mark the entire area that is radiated (it goes from sternum to armpit, collar bone to below my left breast). The black dot in the middle of the "cross" that you can see is a permanent tattoo...and there's a matching one in my armpit. Damn. I was really hoping for something much cooler. At least an "X" marks the spot kind of tattoo. That beautiful scar that you can see is my surgery scar...about half of it. And there's a matching one of those in my armpit also. (3) The new me, with my awesome pixie haircut. When your hair initially comes in after chemo it's a combination of straw and cat hair. I'm not sure how else to describe it, but it HAD to come off almost immediately. Thank goodness for friends who are hairstylists! Next stop, maybe some color because this current one is all kinds of NOT ME. I'm thinking purple...or Katy Perry blue.
Saturday, August 17, 2013
So, This Happened...
The folks at Stupid Cancer posted a link to my Speak No Evil post (about what not to say to a cancer patient) on their Facebook page and Twitter feed a few days ago. And it kind of took off and obviously hit a nerve with folks. So far, it's had about 7,000+ hits plus almost 40 comments. In addition, it's been "shared" and "retweeted" around and around. And people are printing it out for use in cancer centers as a guide for staff. Cool!
Everybody LOVES it! Yeah, and thanks to those co-conspirators that helped write it.
So glad to be helping everyone out! Feel free to check out the post again (see the link above), read the comments...or leave a comment yourself. Always good to hear from you.
Monday, August 12, 2013
Sunday, August 11, 2013
Radiation Update
Two weeks of radiation are in the books. I thought that I would provide an update on how things are going.
First, you must know that radiation is the SAME EVERY DAY. Don't expect a bunch of updates here over the next several weeks because it is basically just Lather. Rinse. Repeat. Mind-numbing and boring. If you want to know what radiation is like on a day to day basis, see my previous post here.
For those that forgot, yes...it really is every day, 5 days/week. Two weeks down, 5+ more to go. (Somehow I get a partial extra week and I'm not sure how or why. I guess it's because I'm just an overachiever as we've previously discussed here). Here is what I know and how I feel after the 10th treatment:
Compared to chemo, which had an on-time percentage of ZERO, radiation runs 90% on-time. This is quite cool, and I am quickly getting spoiled. And on-time means ON-TIME! You had better be there and dressed in the super-cool (yes, that's sarcasm) gown 3 minutes before your scheduled appointment. For example, for an 11:00am appointment, I come rolling into the facility at 10:53am, do a quick change performance in the dressing room a la Superman in a phonebooth, and sit in the waiting room awaiting my appointment. Usually, my butt has just grazed the chair when the tech comes and calls my name. Then it's off to the "warning: high doses of radiation in this area" room for treatment.
The techs are GREAT! There are 3 women that rotate in, and there are always 2 of them with me. They are my new friends. There's also a student (not like teenager student...he's probably in his mid-20s). They asked me on day 3 if I minded if he was a part of the treatments so he could learn. Since he was not required to stick sharp needles into my spine that might paralyze me (something I wouldn't let the intern do when I was giving birth), I said, "why not?!"
Treatment time varies from 12 minutes (the fastest so far) to 29 minutes (the longest time spent splayed out on the table). I've had chauffeurs taking me each day, really just to keep me company. Teenage boy child wants it noted that he's had to put in 2 shifts out of 10, and feels that's as much Angry Birds as he can possibly sit and play. Usually, my wonderful drivers hang out and have a coffee, read a book, check their email, and stare at the beautiful waterfalls (that my insurance company must be paying for, so I'm glad someone gets to enjoy it).
HOWEVER, just when I was getting used to "definitely being out of there" in under 30 minutes, start to finish, I hit "Take Your Grandparent To Radiation" day this week. Again, nothing against the elderly (and I mean those in the 80+ year old category), and I saw A LOT of grandmas and grandpas while I went through chemo, and I feel horrible that all these years on Earth have not earned them a break from dealing with cancer, but everything just seems to S...L...O...W D...O...W...N when the walker/wheelchair/rolling bed crowd descend. And I'm okay with it, and I did not ask to jump ahead because I could "go quicker" (although I really wanted to). I am happy to just wait and read my book (I still carry one everywhere, just in case). But my 2:00pm appointment that day didn't start until like 2:45pm, so they ruined their on-time percentage.
How do I feel as I'm about to start the 3rd week of treatments?
The fatigue has started to set in. I took a nap after treatment on Monday and Thursday of this past week. Big naps...I think one was 3 hours.
I'm having trouble breathing (and my husband thinks it's crazy that I haven't brought it up to the doctor yet). Not all the time, but I can definitely feel some shortness of breath, and it comes and goes. Like in the shower on Friday when I thought I was going to die and had to sit down. Am so used to this from chemo though. But yeah, he's right...I probably shouldn't ignore this since my heart and lungs are so close to the treatment area.
I can feel the area they are radiating. And it's not just the 3-4 "spots" that they are targeting. It is the entire area that the doctor originally marked on my chest with a Sharpie. Kind of a funky rectangle from sternum to armpit, collarbone to below my breast on my left side. There are random shooting pains deep down, similar to what happened after each of my surgeries, so I recognized what the nurse was talking about when she was trying to describe what to expect. Yep, been there, done that.
My skin is starting to look sunburned, especially in my armpit. Terrific. Feels great. You know that feeling when you take a hot shower after getting too much sun at the beach? Yep! That's how I felt starting yesterday. Oh goodie. (FYI, have been warned that this "coloration" could be permanent, and anywhere from red to tan. Or it may not...you just never know). And the best part? It's not just burning the skin that you can see. It's like they are giving 2nd and 3rd degree burns way down deep, through all the tissue.
Going to the hospital every day SUCKS. Don't you think I've earned my own parking spot at this point?? I sure do!!
And a few things of note that are probably residual chemo effects, because it is the gift that just keeps giving. This week my feet went back to being more numb than normal. Just when I thought we had hit a level I could live with. And my hands HURT...shooting pains in my fingertips, and even less hand strength than usual. And I thought it was impossible to get lower than zero, but I guess not. Joint pain all over, especially in my shoulders. All of these were so bad this week that I think one of the really long naps could be contributed to my hope to sleep off these symptoms (no such luck).
So yes, basically it's just one big party here. I did get out and about a couple of times this week, to a movie with friends, and the Harry Connick Jr. concert last night. Nice to have that fun...hoping there are more good days than bad days moving forward. Fingers crossed!
First, you must know that radiation is the SAME EVERY DAY. Don't expect a bunch of updates here over the next several weeks because it is basically just Lather. Rinse. Repeat. Mind-numbing and boring. If you want to know what radiation is like on a day to day basis, see my previous post here.
For those that forgot, yes...it really is every day, 5 days/week. Two weeks down, 5+ more to go. (Somehow I get a partial extra week and I'm not sure how or why. I guess it's because I'm just an overachiever as we've previously discussed here). Here is what I know and how I feel after the 10th treatment:
Compared to chemo, which had an on-time percentage of ZERO, radiation runs 90% on-time. This is quite cool, and I am quickly getting spoiled. And on-time means ON-TIME! You had better be there and dressed in the super-cool (yes, that's sarcasm) gown 3 minutes before your scheduled appointment. For example, for an 11:00am appointment, I come rolling into the facility at 10:53am, do a quick change performance in the dressing room a la Superman in a phonebooth, and sit in the waiting room awaiting my appointment. Usually, my butt has just grazed the chair when the tech comes and calls my name. Then it's off to the "warning: high doses of radiation in this area" room for treatment.
The techs are GREAT! There are 3 women that rotate in, and there are always 2 of them with me. They are my new friends. There's also a student (not like teenager student...he's probably in his mid-20s). They asked me on day 3 if I minded if he was a part of the treatments so he could learn. Since he was not required to stick sharp needles into my spine that might paralyze me (something I wouldn't let the intern do when I was giving birth), I said, "why not?!"
Treatment time varies from 12 minutes (the fastest so far) to 29 minutes (the longest time spent splayed out on the table). I've had chauffeurs taking me each day, really just to keep me company. Teenage boy child wants it noted that he's had to put in 2 shifts out of 10, and feels that's as much Angry Birds as he can possibly sit and play. Usually, my wonderful drivers hang out and have a coffee, read a book, check their email, and stare at the beautiful waterfalls (that my insurance company must be paying for, so I'm glad someone gets to enjoy it).
HOWEVER, just when I was getting used to "definitely being out of there" in under 30 minutes, start to finish, I hit "Take Your Grandparent To Radiation" day this week. Again, nothing against the elderly (and I mean those in the 80+ year old category), and I saw A LOT of grandmas and grandpas while I went through chemo, and I feel horrible that all these years on Earth have not earned them a break from dealing with cancer, but everything just seems to S...L...O...W D...O...W...N when the walker/wheelchair/rolling bed crowd descend. And I'm okay with it, and I did not ask to jump ahead because I could "go quicker" (although I really wanted to). I am happy to just wait and read my book (I still carry one everywhere, just in case). But my 2:00pm appointment that day didn't start until like 2:45pm, so they ruined their on-time percentage.
How do I feel as I'm about to start the 3rd week of treatments?
The fatigue has started to set in. I took a nap after treatment on Monday and Thursday of this past week. Big naps...I think one was 3 hours.
I'm having trouble breathing (and my husband thinks it's crazy that I haven't brought it up to the doctor yet). Not all the time, but I can definitely feel some shortness of breath, and it comes and goes. Like in the shower on Friday when I thought I was going to die and had to sit down. Am so used to this from chemo though. But yeah, he's right...I probably shouldn't ignore this since my heart and lungs are so close to the treatment area.
I can feel the area they are radiating. And it's not just the 3-4 "spots" that they are targeting. It is the entire area that the doctor originally marked on my chest with a Sharpie. Kind of a funky rectangle from sternum to armpit, collarbone to below my breast on my left side. There are random shooting pains deep down, similar to what happened after each of my surgeries, so I recognized what the nurse was talking about when she was trying to describe what to expect. Yep, been there, done that.
My skin is starting to look sunburned, especially in my armpit. Terrific. Feels great. You know that feeling when you take a hot shower after getting too much sun at the beach? Yep! That's how I felt starting yesterday. Oh goodie. (FYI, have been warned that this "coloration" could be permanent, and anywhere from red to tan. Or it may not...you just never know). And the best part? It's not just burning the skin that you can see. It's like they are giving 2nd and 3rd degree burns way down deep, through all the tissue.
Going to the hospital every day SUCKS. Don't you think I've earned my own parking spot at this point?? I sure do!!
And a few things of note that are probably residual chemo effects, because it is the gift that just keeps giving. This week my feet went back to being more numb than normal. Just when I thought we had hit a level I could live with. And my hands HURT...shooting pains in my fingertips, and even less hand strength than usual. And I thought it was impossible to get lower than zero, but I guess not. Joint pain all over, especially in my shoulders. All of these were so bad this week that I think one of the really long naps could be contributed to my hope to sleep off these symptoms (no such luck).
So yes, basically it's just one big party here. I did get out and about a couple of times this week, to a movie with friends, and the Harry Connick Jr. concert last night. Nice to have that fun...hoping there are more good days than bad days moving forward. Fingers crossed!
Monday, August 5, 2013
Music Monday
This weekend, I am going to the Harry Connick Jr concert. Yes, I am very excited for this! I have NEVER missed a concert of his when he is touring in the area. If fact, we actually flew to New York one year so we could see him on Broadway. (Boy, is the back story about how we got tickets to that show quite entertaining!!). It's possible that I am one of his biggest fans.
For today's musical inspiration, I thought I would post one of the songs I LOVE to see him play live. So. Much. Fun. You just want to get up and dance...cannot help but smile.
For today's musical inspiration, I thought I would post one of the songs I LOVE to see him play live. So. Much. Fun. You just want to get up and dance...cannot help but smile.
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?"
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