Well, it's Christmas time, a time that seemed so far away back in March. I didn't know if I was going to see winter and here I am celebrating Christmas. You here the words 'you have cancer' and everything becomes about the present and the future somewhat fads away. I was more worried about losing a breast and preparing for my next chemo that things like Christmas seemed insignificant. How things have changed.
There's this weird feeling you get once you're told that you are cancer-free and for me it wasn't joy or excitement or even relief, instead it was like a 'proceed with caution' feeling. It's almost like I'm afraid that if I tell too many people that I am cancer-free that my body is going to make a liar out of me. However, it seems as though every time I do let my guard down and accept my cancer-free results, my body reacts in a positive way. I smile more, I laugh harder, and apparently, I get my period.
Anyone who knows me knows that fertility has been a huge focus of mine ever since I found out that chemo may have robbed me of the opportunity to have children, something that I have been planning on since I was a child myself. Once you go through chemo, it can do so much damage to your body/ovaries that it can make you infertile and they have no way to determine if your period will return or not; some women are permanently in menopause and other women get their periods back.
I have always wanted children but I think as women, there's an expectation or at least an assumption that when you want children, you are able to have them and unfortunately, I'm not sure how easy that will be for me. I have a few friends trying to get pregnant right now and sometimes I will get a text that says 'Ugh, I got my period' and I usually text back 'Ugh, I haven't gotten mine'. We both want children but in their case having a period means they aren't pregnant, in my situation, having a period is a good thing.
Anyway, I will come back to my period in a minute...
I have never felt better. Cancer is just not a part of my every day vocabulary anymore, I don't feel like I live at the hospital, my hair, eyelashes, and eyebrows will all be present at the dinner table with me on Christmas day, I have really gotten involved in helping other young women going through cancer, and Keith and I, well I think we all know how I feel about Keith; we are better than ever. And, wouldn't you know it, I got my period this week. It seems as though, when my heart smiles, my ovaries smile along with it. Having a period doesn't necessarily mean I am ovulating but it sure is one step closer.
Speaking of one step closer, I just got off the phone with my plastic surgeon's office and I have a date for my surgery, it's January 12th. It's my surgery to get my expander removed and my implant put in. I joke that I'm like Pinocchio and my next surgery date is the day that I become a 'real girl' because I will have completed my reconstruction. The first thing I think about is of course the blood test at my pre-op and the disgusting IV that I'll need but January 13th is only one day past the 12th and that day will be needle free. While I'm on the topic of doctors, I never heard from my surgeon about my mammogram and they said if you don't hear from us in 4 or 5 days, you're clear. That was Dec 7th, so yahoo.
But before I jump into January and talk about my next surgery, I want to talk about the 'why' of cancer. A number of different people have asked me why I got cancer. They want a reason, maybe it's so they have something to blame, or maybe they hope that I'm predisposed to something that they are not predisposed to so they feel better about their chances of not getting it but regardless, knowing 'why' has never really been a concern of mine. My tumour was estrogen receptor positive (in my case, I think it just means I am more of a woman) but we don't know why I have an excess of estrogen. I guess I wonder, why does anyone ever get cancer?
If I could go back somehow and not have cancer, I would in a heart beat, who wouldn't, right? But, there are a few things that I have taken away from having cancer that I couldn't have learned otherwise. I think I got cancer because I could handle it, even though I didn't think I would be able to, I did it and did it with my head held high. I think I got cancer because it tried to pick on someone who may have given the impression of being weak but ended up being so strong. I think I got cancer because I was able to teach from it and use my experience to help people better understand cancer who've never had it and help those who have, better cope with it. Finally, I think I got cancer so it could teach me a lesson or two about what's important in life, about making a difference in the way I impact other's lives and about true friendship and support.
During this time of the year, I always get a little emotional (thank you for passing that gene down to me, Mom) because it's a time for family, a time to be thankful and a time for presents (just kidding). Christmas has always been my favourite time of the year because everything is magical and in my family, it always has been about giving. This year I wasn't sure if Christmas was going to be taken away from me but thanks to the support of my family, old friends and new friends, a few strangers, doctors, nurses, medical advancements, treatments and maybe a little bit of my own strength, this Christmas really is going to be the best yet.
Merry Christmas to my family, my friends (both old and new), from 25 year survivors to the newly diagnosed, to caregivers, to doctors and nurses, to everyone at the CCTFA (especially Sherry and Chantal), to everyone whose job it is to emotionally support cancer patients and lastly to my Aunt Flo (thanks for visiting - don't be a stranger).
Saturday, December 24, 2011
Thursday, December 15, 2011
The Game of Life
Last week, Keith and I played The Game of Life (based on the title, you thought I was going to get all philosophical on you and talk about cancer being my roommate again or compare having cancer to taking a wrong turn into a bad neighbourhood, didn't you?). I won all three times; I'm not going to lie, I'm pretty good at Life (get it?). Anyway, I managed to make it through each game with no cancer, at least one child, and more than $1.5 million at retirement. Here's hoping the latter two are what life has in store for me.
It was so nice to 'play' Life instead of live it. There is no room on the little female peg for any mastectomy scars and there's no square that you can land on that says 'Quit your job and go through chemo - you have cancer.' Thank God, otherwise that would be one hell of a depressing children's game.
Keith does not like board games but he does like 'Life'. The night after his three-round massacre, he asked what I wanted to do and I suggested playing 'Life' again. He declined my offer, not because he is a sore loser but because he was board gamed out. I would play that game every day if I could (actually, I thought about playing against my self the other day - it's a garuanteed win) because with the spin of a wheel, you can pop out twins, or win the lottery, or get paid $80000 as one of your paycheques.
Other than 'Life' the past couple of weeks have been great. Nothing really spectacular has happened and I think that's what makes it so great. Doctor's appointments have gone well, I am starting to feel really good, financially we are doing much better thanks to my insurance company revisiting my file and changing their decision, Christmas is almost here and you wouldn't know I had just been through chemo thanks to my hair growing back so quickly (although it does resemble a cockerspaniel from the back thanks to the 'chemo-curls' trying to make their presence known).
Obviously, my life wouldn't be my life without a little drama. I'm not going to lie, I have had a little stress over my upcoming test results. Last week, I had a mammogram on Wednesday. Once you've had cancer, you unfortunately become a bit of a cancer expert and you are able to throw around the medical jargon like a pro. As the tech was looking at my film, I asked if she saw any 'calcification'. I heard this word for the first time back in March, I didn't like it then and I don't like it now. In an older woman, this isn't a bad thing, it's kind of expected, but in someone my age, there shouldn't be a lot of it (there's also micro vs macrocalcification and the importance of its presence depends on the amount in your breast). Anyway, she said there was some but she didn't think it was anything to worry about.
For the past week, I've been waiting for my results and on Monday morning, my cell phone rang. I looked at the number, recognized it was one of my many doctor's offices and held my breath. I answered the phone and I heard "Can I speak to Katherine, please?" - Shit, shit, shit, they found something and now I have to go back in and potentially have another mastectomy. "This is Katherine" - wait, or can I be Denise or Samantha or Tess, today? No, no, I am who I am. "Hi, this is Dr...." Oh I know who it is and I know the drill, you're calling from Dr.ShittyTiming's office and you need to see me to discuss some test results. But then, the girl's voice on the other end of the phone said a different doctor's name than I was expecting, it was Dr.G's office calling. "Dr.G? Dr.G? how do I know that name? Oh right, it's my plastic surgeon's name." They were calling to tell me they had a cancellation and wondered if I wanted the date. Ahhhhhh! What a relief. I felt like throwing up and doing the can-can all within about 10 seconds of each other.
I can't book my next surgery (getting my implant put in and my expander taken out) until I know for sure that this lump in 'lefty' is nothing because if it is something, I will need an oncology surgeon as well as my plastic surgeon there at the same time, working their magic. I am to wait 4 to 5 days (today is day 5) and if I hear nothing then I am in the clear. Personally, I will feel better by Friday (a full 7 days, just in case their office is backed up).
Seriously, this cancer garbage never stops. It's a constant game of Symptom-Test-Wait-Result-Reaction. Well, honestly, it's more like Symptom-Wait-Appointment-Wait-Test-Wait-Result-Reaction. For those of you who have someone in your life who has dealt with cancer, give them a hug for me the next time you see them. I can promise you that every cancer patient has felt like this. The tests never stop, the appts never stop, and we all know that the worry NEVER stops.
I can worry all I want but it's not going to change the results and regardless of waiting for test results, as I said, I am doing very well. Honestly, I feel really good about the future, I have been lucky enough to get involved with some great organizations to help in any way I can, and I've finally taken over the driver's seat of my life and thrown cancer in the back seat (dammit, another analogy).
If you're on Twitter, say 'hello' @lovlykatielumps. I like to pretend like I know what I'm doing on Twitter but truthfully, be patient with me if you do decide to follow me.
It was so nice to 'play' Life instead of live it. There is no room on the little female peg for any mastectomy scars and there's no square that you can land on that says 'Quit your job and go through chemo - you have cancer.' Thank God, otherwise that would be one hell of a depressing children's game.
Keith does not like board games but he does like 'Life'. The night after his three-round massacre, he asked what I wanted to do and I suggested playing 'Life' again. He declined my offer, not because he is a sore loser but because he was board gamed out. I would play that game every day if I could (actually, I thought about playing against my self the other day - it's a garuanteed win) because with the spin of a wheel, you can pop out twins, or win the lottery, or get paid $80000 as one of your paycheques.
Other than 'Life' the past couple of weeks have been great. Nothing really spectacular has happened and I think that's what makes it so great. Doctor's appointments have gone well, I am starting to feel really good, financially we are doing much better thanks to my insurance company revisiting my file and changing their decision, Christmas is almost here and you wouldn't know I had just been through chemo thanks to my hair growing back so quickly (although it does resemble a cockerspaniel from the back thanks to the 'chemo-curls' trying to make their presence known).
Obviously, my life wouldn't be my life without a little drama. I'm not going to lie, I have had a little stress over my upcoming test results. Last week, I had a mammogram on Wednesday. Once you've had cancer, you unfortunately become a bit of a cancer expert and you are able to throw around the medical jargon like a pro. As the tech was looking at my film, I asked if she saw any 'calcification'. I heard this word for the first time back in March, I didn't like it then and I don't like it now. In an older woman, this isn't a bad thing, it's kind of expected, but in someone my age, there shouldn't be a lot of it (there's also micro vs macrocalcification and the importance of its presence depends on the amount in your breast). Anyway, she said there was some but she didn't think it was anything to worry about.
For the past week, I've been waiting for my results and on Monday morning, my cell phone rang. I looked at the number, recognized it was one of my many doctor's offices and held my breath. I answered the phone and I heard "Can I speak to Katherine, please?" - Shit, shit, shit, they found something and now I have to go back in and potentially have another mastectomy. "This is Katherine" - wait, or can I be Denise or Samantha or Tess, today? No, no, I am who I am. "Hi, this is Dr...." Oh I know who it is and I know the drill, you're calling from Dr.ShittyTiming's office and you need to see me to discuss some test results. But then, the girl's voice on the other end of the phone said a different doctor's name than I was expecting, it was Dr.G's office calling. "Dr.G? Dr.G? how do I know that name? Oh right, it's my plastic surgeon's name." They were calling to tell me they had a cancellation and wondered if I wanted the date. Ahhhhhh! What a relief. I felt like throwing up and doing the can-can all within about 10 seconds of each other.
I can't book my next surgery (getting my implant put in and my expander taken out) until I know for sure that this lump in 'lefty' is nothing because if it is something, I will need an oncology surgeon as well as my plastic surgeon there at the same time, working their magic. I am to wait 4 to 5 days (today is day 5) and if I hear nothing then I am in the clear. Personally, I will feel better by Friday (a full 7 days, just in case their office is backed up).
Seriously, this cancer garbage never stops. It's a constant game of Symptom-Test-Wait-Result-Reaction. Well, honestly, it's more like Symptom-Wait-Appointment-Wait-Test-Wait-Result-Reaction. For those of you who have someone in your life who has dealt with cancer, give them a hug for me the next time you see them. I can promise you that every cancer patient has felt like this. The tests never stop, the appts never stop, and we all know that the worry NEVER stops.
I can worry all I want but it's not going to change the results and regardless of waiting for test results, as I said, I am doing very well. Honestly, I feel really good about the future, I have been lucky enough to get involved with some great organizations to help in any way I can, and I've finally taken over the driver's seat of my life and thrown cancer in the back seat (dammit, another analogy).
If you're on Twitter, say 'hello' @lovlykatielumps. I like to pretend like I know what I'm doing on Twitter but truthfully, be patient with me if you do decide to follow me.
Wednesday, December 7, 2011
Rerouting My Road Map of Life
Well, today is another doctor's appointment. Today is mammogram day.
On Friday, I found out that I do not have the breast cancer gene (yahoo). I wanted to get tested for the BRCA1/BRCA2 gene because they would monitor my ovaries more closely from now on and take a screening approach rather than a diagnostic one if I did have it. Not having it is good news. This news was followed by 'but you might have 'this' disease or 'that' disease." So, because I was only 26 when I was diagnosed, they are trying to find a reason for it. The odds of my cancer being based on environmental causes, my surroundings, hormones in the water I drink, etc. is less likely because the tumour developed in only 26 years rather than the average 50+ years.
They want to determine whether my genetics are working against me so we can improve the type and amount of screening that I get. So, for example, if I have one of the diseases that could explain breast cancer at 26, then I might have an increased chance of getting pancreatic cancer (these are just examples) so from now on, every time I have my yearly mammogram, I will also have an MRI to check on my pancreas and hopefully catch anything that's there in its early stages.
However, there are some diseases where cancer is radiation 'induced' meaning that with the more radiation I get (from MRIs, Mammograms, X-rays, etc.), the higher chance I have of developing one of THOSE cancers. So, really, it's a good thing to figure out if I have any of these gene-based cancers so we can either do more aggressive screening or instead, try to minimize the amount of screening but maximize testing results.
So, the next time I am at the hospital, I will be getting tested for these two other syndromes/disorders/diseases that may help explain cancer at 26. I have something like a 3% chance of having either of these diseases and no one seems to think that I have it (two of the 'qualifying symptoms' is a history of childhood cancers in your family and a head circumference of over 58cm - neither of which I have). If I don't have either of those mutations then my blood work goes onto a research lab where they try to determine what genetic reasoning there may be for my specific breast cancer. I may not know for 10 years but at least they have another sample to work with.
After I found out that I wasn't BRCA positive, I got a little emotional while I was texting my dad. I'm going to take a stab at trying to explain this and hope I don't fail miserably.
I think about the day I found out I had cancer and wonder how I would have reacted if the results were different, if I had not had cancer and the lump had been a harmless cyst. Would I have been so thankful to not have cancer that I would have changed my approach to living (probably not) - the same way I've changed my approach since my diagnosis? My life would have been so different if they would have said 'you do NOT have cancer'. Well, I guess rather than being different, it would have stayed the same - it would have been different than my current life but it would have stayed the same as my pre-diagnosis life. When I am told good 'medical' news, I celebrate it for a day then move on to the next appointment but when I get bad news, it affects the decisions that I make for the rest of my life.
I think about how the last 5 days would have been so different if the BRCA results would have been positive; I would have been planning my next mastectomy, planning a gynecological exam, and I would have been fearful of my mom's/niece's/future children's odds of having it too. I don't have to worry about any of that now. I was given a green light.
It's like I've printed off my life road map from Mapquest and originally, I knew exactly where I was headed but lately new directions are rerouting me into some sketchy neighbourhoods. I get to a traffic light where I'm stuck in these bad parts of town; it always seems to be yellow when I get there - proceed with caution, and then depending on the doctor's appointments and my results, it either turns green or red - both of which severely change the remainder of my trip. Does that make sense?
Wait, what am I talking about? Last week, cancer was my roommate and now I've compared my life with cancer to being at a stop light in the ghetto? I think all I'm trying to say is, we need to celebrate the good news that has no affect on changing our lives and gives us the opportunity to keep it the same.
I get in these moods, these 'see the bright side of things' moods, when I go home and see with my family. Yesterday, I got to hang out with my 4 year old niece and there's nothing like a day with her to put things into perspective. I swear to you, yesterday, for part of the day, cancer wasn't even in my vernacular. Cancer? What cancer? I put all my energy into her so cancer took a back seat. She doesn't care how many breasts I have or if my eyelashes aren't as full and thick as they used to be. She cares about hanging out with Auntie Katie. I got to sing about Batman smelling, robin laying a egg, the Batmobile and the Joker taking ballet. I got to decorate Christmas tree ornaments that just happened to be cookies (bonus) and I got to see the toy section of a department store in a whole new light.
So, when I think about getting this mammogram today, or getting the test results (which might be today, too), I have to remember that, if they are good results, I need to let them positively affect my life as much as they would negatively affect it. If this lump is cancerous that means more surgery, more chemo, etc. etc. so if it's not I think that should mean more celebration, more taking risks and more (intentional) adventures.
On Friday, I found out that I do not have the breast cancer gene (yahoo). I wanted to get tested for the BRCA1/BRCA2 gene because they would monitor my ovaries more closely from now on and take a screening approach rather than a diagnostic one if I did have it. Not having it is good news. This news was followed by 'but you might have 'this' disease or 'that' disease." So, because I was only 26 when I was diagnosed, they are trying to find a reason for it. The odds of my cancer being based on environmental causes, my surroundings, hormones in the water I drink, etc. is less likely because the tumour developed in only 26 years rather than the average 50+ years.
They want to determine whether my genetics are working against me so we can improve the type and amount of screening that I get. So, for example, if I have one of the diseases that could explain breast cancer at 26, then I might have an increased chance of getting pancreatic cancer (these are just examples) so from now on, every time I have my yearly mammogram, I will also have an MRI to check on my pancreas and hopefully catch anything that's there in its early stages.
However, there are some diseases where cancer is radiation 'induced' meaning that with the more radiation I get (from MRIs, Mammograms, X-rays, etc.), the higher chance I have of developing one of THOSE cancers. So, really, it's a good thing to figure out if I have any of these gene-based cancers so we can either do more aggressive screening or instead, try to minimize the amount of screening but maximize testing results.
So, the next time I am at the hospital, I will be getting tested for these two other syndromes/disorders/diseases that may help explain cancer at 26. I have something like a 3% chance of having either of these diseases and no one seems to think that I have it (two of the 'qualifying symptoms' is a history of childhood cancers in your family and a head circumference of over 58cm - neither of which I have). If I don't have either of those mutations then my blood work goes onto a research lab where they try to determine what genetic reasoning there may be for my specific breast cancer. I may not know for 10 years but at least they have another sample to work with.
After I found out that I wasn't BRCA positive, I got a little emotional while I was texting my dad. I'm going to take a stab at trying to explain this and hope I don't fail miserably.
I think about the day I found out I had cancer and wonder how I would have reacted if the results were different, if I had not had cancer and the lump had been a harmless cyst. Would I have been so thankful to not have cancer that I would have changed my approach to living (probably not) - the same way I've changed my approach since my diagnosis? My life would have been so different if they would have said 'you do NOT have cancer'. Well, I guess rather than being different, it would have stayed the same - it would have been different than my current life but it would have stayed the same as my pre-diagnosis life. When I am told good 'medical' news, I celebrate it for a day then move on to the next appointment but when I get bad news, it affects the decisions that I make for the rest of my life.
I think about how the last 5 days would have been so different if the BRCA results would have been positive; I would have been planning my next mastectomy, planning a gynecological exam, and I would have been fearful of my mom's/niece's/future children's odds of having it too. I don't have to worry about any of that now. I was given a green light.
It's like I've printed off my life road map from Mapquest and originally, I knew exactly where I was headed but lately new directions are rerouting me into some sketchy neighbourhoods. I get to a traffic light where I'm stuck in these bad parts of town; it always seems to be yellow when I get there - proceed with caution, and then depending on the doctor's appointments and my results, it either turns green or red - both of which severely change the remainder of my trip. Does that make sense?
Wait, what am I talking about? Last week, cancer was my roommate and now I've compared my life with cancer to being at a stop light in the ghetto? I think all I'm trying to say is, we need to celebrate the good news that has no affect on changing our lives and gives us the opportunity to keep it the same.
I get in these moods, these 'see the bright side of things' moods, when I go home and see with my family. Yesterday, I got to hang out with my 4 year old niece and there's nothing like a day with her to put things into perspective. I swear to you, yesterday, for part of the day, cancer wasn't even in my vernacular. Cancer? What cancer? I put all my energy into her so cancer took a back seat. She doesn't care how many breasts I have or if my eyelashes aren't as full and thick as they used to be. She cares about hanging out with Auntie Katie. I got to sing about Batman smelling, robin laying a egg, the Batmobile and the Joker taking ballet. I got to decorate Christmas tree ornaments that just happened to be cookies (bonus) and I got to see the toy section of a department store in a whole new light.
So, when I think about getting this mammogram today, or getting the test results (which might be today, too), I have to remember that, if they are good results, I need to let them positively affect my life as much as they would negatively affect it. If this lump is cancerous that means more surgery, more chemo, etc. etc. so if it's not I think that should mean more celebration, more taking risks and more (intentional) adventures.
Friday, December 2, 2011
The Never Ending Test Results
It's 2am and I have to be at the hospital in 7 hours. I find out if I have the BRCA1 or BRCA2 gene tomorrow.
I think about March 11th and how much that day changed my life. I know that now every March 11th, the day will be recognized and approached with some anxiety and emotion. Will December 2nd have a similar meaning? Do I really need 2 days of diagnosis? If it does turn out that I do have it, do I want to spend the next seven BRCA-free hours, sleeping?
We assume that once you've heard "You have cancer" that there can't be anything worse, that no doctor's appointment will match that doctor's appointment and yet, I seem to be a mere seven hours away from another one. You always wait for the other shoe to drop.
I went to see my oncologist on Tuesday and we talked about how I was feeling, and the lump in 'lefty' and she didn't seem too concerned. She assured me that I was making a difference in the cancer world by speaking about it and writing about it and trying to help others. If only our actions could some how affect our DNA, if only we could change the course of our cells in our bodies by doing good (Ok, is any of this making sense or is this some 2am rambling happening right now?).
To be honest, I seem to have pretty accurate anxiety when it comes to doctor's appointments and when I'm nervous, it is for a reason and when I'm calm and suspect nothing, it turns out to be nothing. I am not so nervous that I am vibrating with fear about tomorrow's appointment but I'm up at 2am so I can't be that calm either.
For those of you who don't know, having the breast cancer gene (BRCA1/BRCA2) means that you are at a higher risk of getting other cancers and so they start looking at taking your other breast and an early hysterectomy; in other words - they try to make you as manly as possible without providing you with the visible hardware of a man.
Whether I worry about this or not, the results sitting in the little folder in the filing cabinet are not going to change. There's a piece of paper, inside a beige coloured folder, sitting in a dark cabinet right now, waiting to be read aloud tomorrow and whether I sleep tonight or not, those results are not going to change. During this whole 'journey' that I've been on in the last 8 1/2 months, people have been saying be 'positive' and yet tomorrow, the only thing I want to hear is, 'negative'.
If I am BRCA positive, it just complicates everything. It makes nothing impossible, just more difficult and I've had enough 'difficult' in my life lately, thank you very much.
I think about all the women who will hear "You have cancer" tomorrow and although, "You are BRCA positive" just doesn't compare, it's another appointment where I have to hold my breath and wait to hear my fate be read to me in a doctor's office.
Mentally, I have been doing really well lately. I feel like cancer was a shitty roommate that has finally moved out and we are slowing fixing the holes that he's punched our walls and trying to clean the stains he left on the carpets; we are trying to mend what he's destroyed. I really don't want to let his jerk-face cousin, BRCA, move in for 2012 - I have too many plans to be preoccupied with him, too (Ok, have I totally lost it? Seriously, now cancer is my roommate? Ok, ok, I'll go to bed).
6h43m until I know...
I think about March 11th and how much that day changed my life. I know that now every March 11th, the day will be recognized and approached with some anxiety and emotion. Will December 2nd have a similar meaning? Do I really need 2 days of diagnosis? If it does turn out that I do have it, do I want to spend the next seven BRCA-free hours, sleeping?
We assume that once you've heard "You have cancer" that there can't be anything worse, that no doctor's appointment will match that doctor's appointment and yet, I seem to be a mere seven hours away from another one. You always wait for the other shoe to drop.
I went to see my oncologist on Tuesday and we talked about how I was feeling, and the lump in 'lefty' and she didn't seem too concerned. She assured me that I was making a difference in the cancer world by speaking about it and writing about it and trying to help others. If only our actions could some how affect our DNA, if only we could change the course of our cells in our bodies by doing good (Ok, is any of this making sense or is this some 2am rambling happening right now?).
To be honest, I seem to have pretty accurate anxiety when it comes to doctor's appointments and when I'm nervous, it is for a reason and when I'm calm and suspect nothing, it turns out to be nothing. I am not so nervous that I am vibrating with fear about tomorrow's appointment but I'm up at 2am so I can't be that calm either.
For those of you who don't know, having the breast cancer gene (BRCA1/BRCA2) means that you are at a higher risk of getting other cancers and so they start looking at taking your other breast and an early hysterectomy; in other words - they try to make you as manly as possible without providing you with the visible hardware of a man.
Whether I worry about this or not, the results sitting in the little folder in the filing cabinet are not going to change. There's a piece of paper, inside a beige coloured folder, sitting in a dark cabinet right now, waiting to be read aloud tomorrow and whether I sleep tonight or not, those results are not going to change. During this whole 'journey' that I've been on in the last 8 1/2 months, people have been saying be 'positive' and yet tomorrow, the only thing I want to hear is, 'negative'.
If I am BRCA positive, it just complicates everything. It makes nothing impossible, just more difficult and I've had enough 'difficult' in my life lately, thank you very much.
I think about all the women who will hear "You have cancer" tomorrow and although, "You are BRCA positive" just doesn't compare, it's another appointment where I have to hold my breath and wait to hear my fate be read to me in a doctor's office.
Mentally, I have been doing really well lately. I feel like cancer was a shitty roommate that has finally moved out and we are slowing fixing the holes that he's punched our walls and trying to clean the stains he left on the carpets; we are trying to mend what he's destroyed. I really don't want to let his jerk-face cousin, BRCA, move in for 2012 - I have too many plans to be preoccupied with him, too (Ok, have I totally lost it? Seriously, now cancer is my roommate? Ok, ok, I'll go to bed).
6h43m until I know...
Monday, November 28, 2011
My Cancer-Free Weekend
Last weekend was by far one of the best weekends of my life. Friday, I got to Toronto and was lucky enough to attend a film festival devoted to breast cancer (http://www.breastfestfilmfest.com/). Friday night, a number of us had dinner together. Across the table from me, one woman was introducing herself to one of my friends and she turned to me and said "Hi, I'm Terri". I think my response was something like "Uh, I'm Katie" like she should know who I am, like "THE Katie". Anyway, it was fellow-blogger Terri from afreshchapter. Terri who, when everyone else was saying "Yeah, you're half way through" after my third chemo, said "I won’t sit here and say, you’re halfway through (insert peppy look and cheerleader first pump), instead I will say, ugh…you’re half way through." Terri is pretty much awesome, both online and in person.
From dinner, we headed to the ROM, met up with Catherine (Bumpyboobs) and watched a screening of 'Baring it All' which is a documentary about 'The Scar Project'. What an incredible film and quite the amazing photography exhibition (having seen it via the film). One of the women from the film was in the audience and was part of the Q&A afterwards along with her husband, the director and the photographer. She was my age when she was diagnosed and I think we had the same stage of cancer as well. We had similar treatment and her husband reminded me a bit of Keith. Needless to say, I related to this woman very easily. Near the end of the film, she explained that after breaking her finger, and going to the hospital to get it looked at, tests showed that her cancer (that she thought was gone) had moved into her bones and she now had stage 4 cancer. The girl that I related to the most, the girl who had a similar diagnosis to mine now has stage 4 cancer. I didn't fight any harder than she did, and my treatment was the same as hers so who's to say that it's not going to happen to me? Sometimes, it boils down to "it's just not fair". I can be as positive as I want, drink the special wheat-grass cocktails, never smoke, stop drinking, exercise all I want and cancer can come back. I spoke with her at the reception afterwards and thanked her for being a part of the Scar Project and for representing women like me.
The rest of the weekend was spent with other young women who had been 'there' and knew words like 'expander' without having to explain what it was and understood that 'chemo' isn't just a five letter word that means cancer treatment but instead represents the hardest months of my life and without having to utter one word about it, I knew that they knew what it was like. I don't know how many women I spoke to this weekend whose names I never learned because names didn't matter, we were united through our experience. It was so relieving to not see the face of sympathy when I said "I was 26 when I was diagnosed" and instead be met with a "me too." It's amazing that cancer is what connected us all and yet for the first time since I was diagnosed, I felt like I had a cancer-free weekend. I didn't stand out because I had cancer because everyone there had had cancer. I was an individual for other reasons than having breast cancer and it felt amazing.
In the middle of this incredible weekend was the once in a lifetime night; it was the CCTFA's Mirror Ball. I won't go into too much detail as afreshchapter (Terri) and Bumpyboobs (Catherine) have already hit the nail on the head with both of their descriptions, but what a magical night. The three of us were lucky enough to speak during the night's events and like Terri said, during the soup portion of the meal (we were previously told that we were going to speak right after the soup was served), I was pretty nervous.
We were all gathered and brought back stage. I was still nervous but then I thought (and I think verbalized) "If we can get through cancer, we can go out and speak for a few minutes about having it" and seriously, my nerves went away. I led the way onto the stage, was introduced along with the other two, and when the spotlight shone on me and I went for it. There were over 700 people staring back at me, waiting for me to talk about having cancer, and I think I did a pretty good job. It felt natural, and everyone cheered when I said 'I finished chemo 2 months ago and officially kicked cancer's ass' and it felt so good to be on stage with two other women who were there for me during my treatment when it was so difficult to connect with anyone.
A week later, I am still on a high from Saturday night. We had so many people come up to us afterwards and thank us for speaking, and tell us that we're an inspiration. I loved every minute of it. It's almost like cancer has turned me into this warrior that isn't afraid anymore. I'm not afraid of someone commenting of the size of my hips (or ass for that matter) because my message is so much bigger (even though that's hard to believe) than either one of them. I'm not insecure about walking in heels, something I never do, in front of hundreds of people because it's not my walking that should be evaluated, it's my words.
So, the magical night is over and I am back to reality. I made some incredible friends last weekend and although my contact with most of them is restricted to online, knowing that these incredible women exist and that breast cancer at such a young age doesn't have to be so isolating is so empowering.
Back to reality means back to the world of worry, and doctors and day to day issues. Keith and I were decorating our Christmas tree the other night (as a kid, we weren't allowed to put the tree up much before the 20th of December so I am totally rebelling and putting mine up in November now that I'm an adult and I can make grown-up decisions like that). We had the 'Holiday Hits' station playing on the television and as Tony Bennett sang "Have Yourself a Merry Little Christmas" my eyes filled with tears. Back in March, I didn't know if I was going to make it through the summer let alone to Christmas and here I was decorating a Christmas tree. It was such a surreal feeling, like out of a movie. I find out my blood test results and if I have the BRCA gene this week and go for a mammogram next week to identify the lump in my left breast. Regardless of the future test results, I will make it through (probably with some sort of smile on my face too).
Here's to the next 75 Christmases and if you are a young women who was just diagnosed with breast cancer, please reach out to other young women, we are out there and I can now tell you that it is such an incredible feeling to be just one of the girls again instead of the cancer girl.
From dinner, we headed to the ROM, met up with Catherine (Bumpyboobs) and watched a screening of 'Baring it All' which is a documentary about 'The Scar Project'. What an incredible film and quite the amazing photography exhibition (having seen it via the film). One of the women from the film was in the audience and was part of the Q&A afterwards along with her husband, the director and the photographer. She was my age when she was diagnosed and I think we had the same stage of cancer as well. We had similar treatment and her husband reminded me a bit of Keith. Needless to say, I related to this woman very easily. Near the end of the film, she explained that after breaking her finger, and going to the hospital to get it looked at, tests showed that her cancer (that she thought was gone) had moved into her bones and she now had stage 4 cancer. The girl that I related to the most, the girl who had a similar diagnosis to mine now has stage 4 cancer. I didn't fight any harder than she did, and my treatment was the same as hers so who's to say that it's not going to happen to me? Sometimes, it boils down to "it's just not fair". I can be as positive as I want, drink the special wheat-grass cocktails, never smoke, stop drinking, exercise all I want and cancer can come back. I spoke with her at the reception afterwards and thanked her for being a part of the Scar Project and for representing women like me.
The rest of the weekend was spent with other young women who had been 'there' and knew words like 'expander' without having to explain what it was and understood that 'chemo' isn't just a five letter word that means cancer treatment but instead represents the hardest months of my life and without having to utter one word about it, I knew that they knew what it was like. I don't know how many women I spoke to this weekend whose names I never learned because names didn't matter, we were united through our experience. It was so relieving to not see the face of sympathy when I said "I was 26 when I was diagnosed" and instead be met with a "me too." It's amazing that cancer is what connected us all and yet for the first time since I was diagnosed, I felt like I had a cancer-free weekend. I didn't stand out because I had cancer because everyone there had had cancer. I was an individual for other reasons than having breast cancer and it felt amazing.
In the middle of this incredible weekend was the once in a lifetime night; it was the CCTFA's Mirror Ball. I won't go into too much detail as afreshchapter (Terri) and Bumpyboobs (Catherine) have already hit the nail on the head with both of their descriptions, but what a magical night. The three of us were lucky enough to speak during the night's events and like Terri said, during the soup portion of the meal (we were previously told that we were going to speak right after the soup was served), I was pretty nervous.
We were all gathered and brought back stage. I was still nervous but then I thought (and I think verbalized) "If we can get through cancer, we can go out and speak for a few minutes about having it" and seriously, my nerves went away. I led the way onto the stage, was introduced along with the other two, and when the spotlight shone on me and I went for it. There were over 700 people staring back at me, waiting for me to talk about having cancer, and I think I did a pretty good job. It felt natural, and everyone cheered when I said 'I finished chemo 2 months ago and officially kicked cancer's ass' and it felt so good to be on stage with two other women who were there for me during my treatment when it was so difficult to connect with anyone.
A week later, I am still on a high from Saturday night. We had so many people come up to us afterwards and thank us for speaking, and tell us that we're an inspiration. I loved every minute of it. It's almost like cancer has turned me into this warrior that isn't afraid anymore. I'm not afraid of someone commenting of the size of my hips (or ass for that matter) because my message is so much bigger (even though that's hard to believe) than either one of them. I'm not insecure about walking in heels, something I never do, in front of hundreds of people because it's not my walking that should be evaluated, it's my words.
So, the magical night is over and I am back to reality. I made some incredible friends last weekend and although my contact with most of them is restricted to online, knowing that these incredible women exist and that breast cancer at such a young age doesn't have to be so isolating is so empowering.
Back to reality means back to the world of worry, and doctors and day to day issues. Keith and I were decorating our Christmas tree the other night (as a kid, we weren't allowed to put the tree up much before the 20th of December so I am totally rebelling and putting mine up in November now that I'm an adult and I can make grown-up decisions like that). We had the 'Holiday Hits' station playing on the television and as Tony Bennett sang "Have Yourself a Merry Little Christmas" my eyes filled with tears. Back in March, I didn't know if I was going to make it through the summer let alone to Christmas and here I was decorating a Christmas tree. It was such a surreal feeling, like out of a movie. I find out my blood test results and if I have the BRCA gene this week and go for a mammogram next week to identify the lump in my left breast. Regardless of the future test results, I will make it through (probably with some sort of smile on my face too).
Here's to the next 75 Christmases and if you are a young women who was just diagnosed with breast cancer, please reach out to other young women, we are out there and I can now tell you that it is such an incredible feeling to be just one of the girls again instead of the cancer girl.
Friday, November 18, 2011
Cancer's A Real Jerk
Things are going pretty well right now with the exception of being exhausted 100% of the time. My hair is growing back, and I even have a part in it, I would say 'style' but I think that's jumping the gun a little. Chemo seems like a distant memory and I have started to sleep on my stomach again, it is glorious. I guess it's the small victories that I have learned to celebrate.
Although things are falling into place, I still can't get over how much of a jerk cancer really is. My hair will grow out and I will forget the pains of chemo as time passes but I am starting to learn that once you've had cancer, it becomes a part of you, the same way your fingers or nose or knees are a part of you. It doesn't matter what I do, I will always have had cancer. Even though it's been 8 months since I found out and 2 months since chemo ended, I will always have had cancer.
There are so many reminders in one day of my cancer. I tried on a dress the other day that criss-crossed over my chest. In other words, it had a sort of V-neck neck line. Anyway, the sales lady came over to me and told me that all I needed was a good push-up bra. Ha! I would pay good money for a push-up bra if it made me look like I had breasts to be pushing up. I didn't bother telling her that there was nothing there to push up and instead just told her that I didn't like the colour. It's amazing how insecure you can feel in that quick of a moment. It wasn't a big deal, I forgot about it by the time I left the store (dress-less) but it just makes me realize that cancer is going to affect my day to day living for the rest of my life.
Two days prior to trying on the dress, I was looking for a hair clip of sorts. I asked a sales woman if she had what I was looking for and she showed me a headband. I can't wear a headband without looking like a new born baby but I didn't want to tell her that so I told her that I was looking for a hair clip not band. She assured me that I was foolish for trying to get a hair clip to stay in my hair as it was too short. She was really snotty! I didn't tell her that I didn't have a choice in looking like a boy and what she didn't know was that I had a fascinator in my hair the weekend before that stayed in all night. I wanted to say "you know what, when I wear a headband, I look like a new born baby about to get my first professional pictures taken. I have hair for the first time since June so, when I ask for a hair clip, even if I need to use a whole package of bobby pins to keep it attached to my hair, I don't want a headband!" but of course, I said "Ok, thank you very much."
I didn't bother telling either sales woman because it only makes them embarrassed, apologize and leaves us both in an awkward situation. I know this from experience, I have told a sales woman that I had a mastectomy after she told me to wear a different bra to change the look of a shirt that I was trying on and I foolishly told her that no bra would fix what I had going on under the shirt. She felt bad and I felt bad for telling her.
Needless to say, I ended up going with a dress that I already owned and decided to go with a headband that blended in with my hair ('my hair' what beautiful words) and didn't make me look like I was 3 weeks old.
While I'm on the topic of cancer being a jerk, I found another lump in my breast only this time it is in my left breast. Apparently it's from the reconstruction; the tissue hasn't attached itself to the skin and it's nothing to worry about. Will it reattach itself? And is it nothing to worry about? Or is it the same 'nothing' that my first lump was? Is it normal breast tissue or is it righty's cousin back for revenge? I have looked into a prophylactic mastectomy (they go in and shell out the breast tissue and replace it with an implant) but it's not that easy. I have an 80% chance of losing my nipple and there's no guarantee that it will be a one-step reconstruction and instead I might end up needing another expander and that means I would need a third surgery. Finally, it still doesn't 100% protect me from getting breast cancer and in the future, screening tests will have a more difficult time identifying any abnormalities. Oh, and I have an appointment on December 2nd to find out the results of my BRCA test. You think that once you've heard "you have cancer" there will be no more huge surprises but unfortnately, the past 8 months has been packed full of mean surprises; here's hoping on December 2nd I don't find out about another one.
You know how you seem to be able to hire someone to do just about anything anymore? You can hire someone to plan your entire wedding and you can hire someone to help choose something as personal as a baby name for you, well, I want to hire someone who will make all of my cancer-related decisions for me. I'd like to ask that person, assuming he or she 'exists'; What surgeries should I avoid and which ones should I go through and what foods should I avoid eating in order to never have cancer again? And while you're at it, you might at well stick around for the next five years to help with the side effects of Tamoxifen and how to deal with the constant fear of recurrence, oh, and fertility and child bearing, and child rearing and... you know what, can you move in with me and Keith?
Do you know what I actually need? I need that wand that they use in Men in Black to erase people's memory. I need to be flashed by the wand, have my memory erased, and then told some elaborate story about why I'm not working right now, why I'm so exhausted, and where my right breast went and of course, this story cannot include the word 'cancer'. Does anyone know where I can find such a thing? Cancer has controlled the past 8 months, I don't want it to control the next 8 decades.
Although things are falling into place, I still can't get over how much of a jerk cancer really is. My hair will grow out and I will forget the pains of chemo as time passes but I am starting to learn that once you've had cancer, it becomes a part of you, the same way your fingers or nose or knees are a part of you. It doesn't matter what I do, I will always have had cancer. Even though it's been 8 months since I found out and 2 months since chemo ended, I will always have had cancer.
There are so many reminders in one day of my cancer. I tried on a dress the other day that criss-crossed over my chest. In other words, it had a sort of V-neck neck line. Anyway, the sales lady came over to me and told me that all I needed was a good push-up bra. Ha! I would pay good money for a push-up bra if it made me look like I had breasts to be pushing up. I didn't bother telling her that there was nothing there to push up and instead just told her that I didn't like the colour. It's amazing how insecure you can feel in that quick of a moment. It wasn't a big deal, I forgot about it by the time I left the store (dress-less) but it just makes me realize that cancer is going to affect my day to day living for the rest of my life.
Two days prior to trying on the dress, I was looking for a hair clip of sorts. I asked a sales woman if she had what I was looking for and she showed me a headband. I can't wear a headband without looking like a new born baby but I didn't want to tell her that so I told her that I was looking for a hair clip not band. She assured me that I was foolish for trying to get a hair clip to stay in my hair as it was too short. She was really snotty! I didn't tell her that I didn't have a choice in looking like a boy and what she didn't know was that I had a fascinator in my hair the weekend before that stayed in all night. I wanted to say "you know what, when I wear a headband, I look like a new born baby about to get my first professional pictures taken. I have hair for the first time since June so, when I ask for a hair clip, even if I need to use a whole package of bobby pins to keep it attached to my hair, I don't want a headband!" but of course, I said "Ok, thank you very much."
I didn't bother telling either sales woman because it only makes them embarrassed, apologize and leaves us both in an awkward situation. I know this from experience, I have told a sales woman that I had a mastectomy after she told me to wear a different bra to change the look of a shirt that I was trying on and I foolishly told her that no bra would fix what I had going on under the shirt. She felt bad and I felt bad for telling her.
Needless to say, I ended up going with a dress that I already owned and decided to go with a headband that blended in with my hair ('my hair' what beautiful words) and didn't make me look like I was 3 weeks old.
While I'm on the topic of cancer being a jerk, I found another lump in my breast only this time it is in my left breast. Apparently it's from the reconstruction; the tissue hasn't attached itself to the skin and it's nothing to worry about. Will it reattach itself? And is it nothing to worry about? Or is it the same 'nothing' that my first lump was? Is it normal breast tissue or is it righty's cousin back for revenge? I have looked into a prophylactic mastectomy (they go in and shell out the breast tissue and replace it with an implant) but it's not that easy. I have an 80% chance of losing my nipple and there's no guarantee that it will be a one-step reconstruction and instead I might end up needing another expander and that means I would need a third surgery. Finally, it still doesn't 100% protect me from getting breast cancer and in the future, screening tests will have a more difficult time identifying any abnormalities. Oh, and I have an appointment on December 2nd to find out the results of my BRCA test. You think that once you've heard "you have cancer" there will be no more huge surprises but unfortnately, the past 8 months has been packed full of mean surprises; here's hoping on December 2nd I don't find out about another one.
You know how you seem to be able to hire someone to do just about anything anymore? You can hire someone to plan your entire wedding and you can hire someone to help choose something as personal as a baby name for you, well, I want to hire someone who will make all of my cancer-related decisions for me. I'd like to ask that person, assuming he or she 'exists'; What surgeries should I avoid and which ones should I go through and what foods should I avoid eating in order to never have cancer again? And while you're at it, you might at well stick around for the next five years to help with the side effects of Tamoxifen and how to deal with the constant fear of recurrence, oh, and fertility and child bearing, and child rearing and... you know what, can you move in with me and Keith?
Do you know what I actually need? I need that wand that they use in Men in Black to erase people's memory. I need to be flashed by the wand, have my memory erased, and then told some elaborate story about why I'm not working right now, why I'm so exhausted, and where my right breast went and of course, this story cannot include the word 'cancer'. Does anyone know where I can find such a thing? Cancer has controlled the past 8 months, I don't want it to control the next 8 decades.
Tuesday, November 8, 2011
A Thanks to All Caregivers
I am currently in the waiting room of a dentist's office. Keith is getting a root canal (one he's been putting off since the summer). He is in with the dentist while I write this entry. He was pretty scared (he's a root canal first timer and doesn't know what to expect) and I feel so helpless out here just waiting. I started to wonder, if I feel this helpless during a root canal, how helpless must he have felt for the past 8 months?
I talk a lot about there being missing resources for young women with breast cancer; we seem to be forgotten about when it comes to pictures on pamphlets (usually pictures of 50-60 year old women), guidelines for women and breast health (usually they start at 40), and you rarely see mention of fertility or dealing with menopause in your twenties or thirties (thank you chemo). These are all issues that I think need attention (which is why I write about them) but what also needs attention, rather recognition, is caregivers. Excuse the term 'caregivers' as I know some people are offended by the term but for this purpose it is all encompassing.
My primary caregiver was Keith. I have said this before but, I will never be able to properly express my gratitude (which isn't even close to a strong enough word for how I feel) for what he has done for me. Losing a breats at 26 is awful but knowing that you have a man who loved you when you had 2 breasts and is going to love you with one or none is, if nothing else, a relief and a comfort. He has sacrificed his life (social, financial, work, etc.) for me since March. I could have said "I want to fly to the moon because I think it would help relieve some of this pain" and he would have been on the phone with NASA to inquire how to make it possible. I know he felt so helpless from the day of diagnosis but he has done more for me than I ever expected someone could do.
Six days after I was diagnosed, I came home to a gift on our kitchen table. He explained in the card that with everyone around me who loves me, I am not going through this alone. He said that he would always love me and always be there for me. I opened the gift bag and inside was a journal. He said "I want you to write everything that you can't tell me, in this journal and I will never read it." It was exactly what I needed. I have EVERY day from the day of diagnosis accounted for in that journal. I still write in it to this day.
He has listened to me laugh, cry, talk about recurrence, fertility, and the word 'cancer' has been said more in the past 8 months than it should be in a lifetime. Not once has he said "I don't want to do this anymore" or "I need a break". I'm sure he has felt that way once or twice but not once has he conveyed that to me.
Although there is very little out there for women my age (or at my stage of life) with breast cancer, there is even less for caregivers (especially in Keith's situation). I talk a lot about having a great support system but because I wasn't going through it alone, my supporters need support too. When I think about hugging my parents and my mother-in-law goodbye in the registration area of the hospital as Keith and I left to register for my surgery, it brings tears to my eyes. I wish I could go back in time, take 'that' Katie aside and hug her, tell her it was going to be ok, tell her that she will be able to live without a breast, that there are other women out there just like me, and tell her that no one is disputing that cancer is a jerk but in order to beat it, my breast would need to be removed. Once 'that Katie' was okay, I would go over and reassure my parents of the exact same thing.
While I was in surgery, my family was waiting for me, praying for me, and trying to protect me while I was in the OR. I can imagine that they were petrified. I was getting cancer cut out of my body and there was nothing any of us could do about it but wait, and hope all of it was caught. Then, when I was going through chemo, all anyone could do was watch. They could try to make me more comfortable but they couldn't stop the pain, the puking, the mean thoughts in my head or how chemo was affecting my thinking.
Those around me, those who supported me, didn't express their pain, frustration, sadness, etc. that they were feeling because they thought I had enough on my plate. So, who did they tell? Who did they have to turn to? Who would understand how they were feeling? They could lean on each other but sometimes it's nice to talk to someone who is a third party, someone who doesn't need the same support you do, someone to validate your feelings, someone who can be strong for you without you having to reciprocate. I sometimes wonder what I would have done without Keith, my parents, and my in-laws. I think I would still be in my bed, under the sheets, crying. I couldn't have faced those needles alone, I couldn't have survived chemo without Keith, and lets not forget all that he did for me after surgery (emptying my drain, cleaning me, feeding me, helping me clean my incisions, walking me to the bathroom, changing my shirt because I couldn't accept the loss of my breast).
This entry is devoted to caregivers. I was the one who got the cards when I was diagnosed, I was the one who was sent info about support groups, and about peer counselling but what about the people in my life who were experiencing this diagnosis along with me? No one wanted to lean on me because I wasn't strong enough to handle it but they all had their own individual needs to deal with and no where to deal with them. There needs to be greater resources for caregivers because their needs are separate and unique in comparison to the patient's needs. How many 34 year old men know as much about breast cancer as Keith? Not that many but those who do would surely benefit from each other's support.
Here's to my family, my in-laws and to Keith. Thank you for being strong when I was weak, for saying the right things, for making a joke after you've said the wrong things, and for loving me when I wasn't easy to love. Thanks for believing that I could be strong when I knew I couldn't and thanks for continuing to talk about the 'after-cancer' days and reminding me that I am so much more than my cancer. I love you.
I talk a lot about there being missing resources for young women with breast cancer; we seem to be forgotten about when it comes to pictures on pamphlets (usually pictures of 50-60 year old women), guidelines for women and breast health (usually they start at 40), and you rarely see mention of fertility or dealing with menopause in your twenties or thirties (thank you chemo). These are all issues that I think need attention (which is why I write about them) but what also needs attention, rather recognition, is caregivers. Excuse the term 'caregivers' as I know some people are offended by the term but for this purpose it is all encompassing.
My primary caregiver was Keith. I have said this before but, I will never be able to properly express my gratitude (which isn't even close to a strong enough word for how I feel) for what he has done for me. Losing a breats at 26 is awful but knowing that you have a man who loved you when you had 2 breasts and is going to love you with one or none is, if nothing else, a relief and a comfort. He has sacrificed his life (social, financial, work, etc.) for me since March. I could have said "I want to fly to the moon because I think it would help relieve some of this pain" and he would have been on the phone with NASA to inquire how to make it possible. I know he felt so helpless from the day of diagnosis but he has done more for me than I ever expected someone could do.
Six days after I was diagnosed, I came home to a gift on our kitchen table. He explained in the card that with everyone around me who loves me, I am not going through this alone. He said that he would always love me and always be there for me. I opened the gift bag and inside was a journal. He said "I want you to write everything that you can't tell me, in this journal and I will never read it." It was exactly what I needed. I have EVERY day from the day of diagnosis accounted for in that journal. I still write in it to this day.
He has listened to me laugh, cry, talk about recurrence, fertility, and the word 'cancer' has been said more in the past 8 months than it should be in a lifetime. Not once has he said "I don't want to do this anymore" or "I need a break". I'm sure he has felt that way once or twice but not once has he conveyed that to me.
Although there is very little out there for women my age (or at my stage of life) with breast cancer, there is even less for caregivers (especially in Keith's situation). I talk a lot about having a great support system but because I wasn't going through it alone, my supporters need support too. When I think about hugging my parents and my mother-in-law goodbye in the registration area of the hospital as Keith and I left to register for my surgery, it brings tears to my eyes. I wish I could go back in time, take 'that' Katie aside and hug her, tell her it was going to be ok, tell her that she will be able to live without a breast, that there are other women out there just like me, and tell her that no one is disputing that cancer is a jerk but in order to beat it, my breast would need to be removed. Once 'that Katie' was okay, I would go over and reassure my parents of the exact same thing.
While I was in surgery, my family was waiting for me, praying for me, and trying to protect me while I was in the OR. I can imagine that they were petrified. I was getting cancer cut out of my body and there was nothing any of us could do about it but wait, and hope all of it was caught. Then, when I was going through chemo, all anyone could do was watch. They could try to make me more comfortable but they couldn't stop the pain, the puking, the mean thoughts in my head or how chemo was affecting my thinking.
Those around me, those who supported me, didn't express their pain, frustration, sadness, etc. that they were feeling because they thought I had enough on my plate. So, who did they tell? Who did they have to turn to? Who would understand how they were feeling? They could lean on each other but sometimes it's nice to talk to someone who is a third party, someone who doesn't need the same support you do, someone to validate your feelings, someone who can be strong for you without you having to reciprocate. I sometimes wonder what I would have done without Keith, my parents, and my in-laws. I think I would still be in my bed, under the sheets, crying. I couldn't have faced those needles alone, I couldn't have survived chemo without Keith, and lets not forget all that he did for me after surgery (emptying my drain, cleaning me, feeding me, helping me clean my incisions, walking me to the bathroom, changing my shirt because I couldn't accept the loss of my breast).
This entry is devoted to caregivers. I was the one who got the cards when I was diagnosed, I was the one who was sent info about support groups, and about peer counselling but what about the people in my life who were experiencing this diagnosis along with me? No one wanted to lean on me because I wasn't strong enough to handle it but they all had their own individual needs to deal with and no where to deal with them. There needs to be greater resources for caregivers because their needs are separate and unique in comparison to the patient's needs. How many 34 year old men know as much about breast cancer as Keith? Not that many but those who do would surely benefit from each other's support.
Here's to my family, my in-laws and to Keith. Thank you for being strong when I was weak, for saying the right things, for making a joke after you've said the wrong things, and for loving me when I wasn't easy to love. Thanks for believing that I could be strong when I knew I couldn't and thanks for continuing to talk about the 'after-cancer' days and reminding me that I am so much more than my cancer. I love you.
Wednesday, October 26, 2011
Cancer Limbo
I've spent the last week trying to think of an idea for this entry. Usually, they just come to me, usually I can open up my laptop, go to the link and start to write but this week is different. When it comes to cancer, I now write 'I used to have cancer', when it comes to doctor's appointments, my next one isn't until the end of November, surgery isn't until January and I haven't been 'cleared' to go back to work until February so what can I talk about? I am no longer consumed with it the way I was however, instead of dealing with the day to day aspects of cancer, now it is part of my way of life.
In the very beginning of my diagnosis (the first week), I didn't want anyone to know that I had cancer because I was embarrassed and I needed to get my head wrapped around the idea before I started sharing it with others. Then, I started telling people so they were aware of what I was going through. That slowly progressed into telling EVERYONE because I wanted women to know that cancer doesn't discriminate against age or family history. Now, my hair is growing back (it looks like I just have a bad hair cut instead of having gone through chemo), I'm not being monitored weekly by medical professionals, and treatment is officially done. It's like there's an expectation to go ahead and start healing when really I'm just starting to realize that I was diagnosed with cancer 7 1/2 months ago.
The thought of getting used to life the way it used to be is scary because I don't want to tempt fate. I don't want to foolishly start 'living' knowing that my body may betray me again. It's like I'm in this weird limbo... treatment is still so recent but at the same time diagnosis seems so far away. It's like I'm at some pivotal moment in life where staying at this stage is safe but stagnant whereas taking a leap forward is scary but the benefits may be worth it. I feel like I have these unspoken expectations placed upon me to be/feel better because chemo is over when in reality 8 months ago, I didn't even have cancer.
It was like while I was in treatment, being strong and positive were impressive and now it's almost like they are expected. It's like there's an assumption that because the physical effects of cancer are over, the emotional side should follow and somehow I feel like it has just begun. Treatment may be over but cancer certainly isn't.
At one point last week, I felt a little 'cancered' out. I was invited to go to an event that helped spread breast cancer awareness and I just couldn't go. The thought of saying "26... Yep, I know, and it's not in my family history either." one more time made me want to cry, not because I was sad but because I am so much more than my cancer diagnosis that I wanted to talk about anything else. Sometimes, it feels like I am retelling someone else's story because it still hasn't set it that I've had cancer. It feels like I know this person's story so well but the thought of actually having had cancer is beyond my mental capacity.
I want to help every woman out there, especially the young ones who have just found out that they have breast cancer however I have to find some way to balance my needs, with the pressure (that I put on myself) to be a part of absolutely every breast cancer organization, charity, program, group, etc.. When I was diagnosed I didn't know of any other young women with breast cancer; my surgeon, my post-op nurse, and so many around me said "You're the youngest women I've ever heard of" and although I now know I am not alone, I want the next 20something who hears "You have cancer" to know that she is not alone. And, absolutely every young woman that I have met who has had breast cancer wants to get involved and help other young women. I've been amazed over the past couple of weeks with the incredible women that I have met who have made it their personal mission to 'be there' for young women with breast cancer.
So, the point of this entry? You got me! I don't know, I guess it goes back to a few weeks ago when I talked about being there for someone who has been diagnosed with cancer; let her know you are thinking about her. Cancer doesn't end when treatment does. Also, I guess I wanted to let you into my brain and take a look around. This is such a mishmash of thoughts but I can't really make sense of what's going on up in that head of mine so I didn't think it was fair to make it clear for you when it's still so foggy to me.
What I have written so far was going to be my complete entry and then tonight happened and it all made sense...
So, over the past few weeks, I've been really involved in cancer. I'm taking part in a study for memory/chemo, I'm going to groups, I'm volunteering some of my afternoons for fundraising and tonight I spoke at an event of 100-150 people. In other words, I have taken on a lot and I am now paying for it because I am sick. Today, I had to go to the hospital to pick up some reports then headed over to a group meeting for young women with cancer then got home and dealt with some more insurance garbage then had a melt down.
I'm not trying to be dramatic but sometimes I just seem to be overwhelmed and don't want to have to fight insurance anymore, and wish I had a 'normal' life, I want my breast back, I hate that I've had cancer, I hate that I can navigate you through any hospital just because I'm good at and used to figuring out their layouts, I want to substitute my estrogen inhibiting pills with folic acid pills, my hair is awful, and now I'm sick. I had a bit of break-down today and then I had to put on a smile for this event that I was speaking at. So, I headed out, got to the event early, and at 7:40pm they announced that it was my turn to speak.
I get up there and all the saliva from my mouth disappears (luckily someone noticed and gave me a glass of water). I took a drink, made a joke, and kept going. The microphone had about a half second delay so it was hard to speak when all I could hear myself saying was what I had actually said 1/2 second ago. It was hard to speak because it was like you were trying to speak over someone else. Anyway, all that aside, I was well received - I got my story out there and everyone cheered and clapped when I finished. For the rest of the night women were coming over to me saying that I was brave and inspirational which meant so much to me (I promise, there's a point to this).
Anyway, it all wrapped up at 9:30 and as I was walking down the street to meet Keith, I heard "excuse me" from behind me. I stopped and turned around and a young woman approached me and said "I was in there tonight and I heard your story. How did they find out it was cancer?" So, I went over the whole process of the ultrasounds that led to a mammogram and the eventual biopsy. She said "I found a lump a year ago and the doctor said he would monitor it but they won't do a mammogram because I'm so young." I asked her how old she was and she said she was 35. I reassured her that it probably was nothing but told her to tell her doctor that she now knows of someone who is 26 who was diagnosed and you want further testing. I forced my email address on her in case she had any questions or concerns, no matter how small she thought they may be. She said 'because of you, I am getting a mammogram! I need to know what this is."
In that moment all the other cancer bull shit that I had dealt with today disappeared. In that moment when she said that after hearing my story, she was going to get her lump properly checked out, it made it all worth it. Yes, my mouth was dry and yes, the acoustics weren't great but that girl heard my message and she is going to do something about her lump because I shared my story. It's amazing that I went there to 'teach' and I ended up doing more learning than teaching.
In the very beginning of my diagnosis (the first week), I didn't want anyone to know that I had cancer because I was embarrassed and I needed to get my head wrapped around the idea before I started sharing it with others. Then, I started telling people so they were aware of what I was going through. That slowly progressed into telling EVERYONE because I wanted women to know that cancer doesn't discriminate against age or family history. Now, my hair is growing back (it looks like I just have a bad hair cut instead of having gone through chemo), I'm not being monitored weekly by medical professionals, and treatment is officially done. It's like there's an expectation to go ahead and start healing when really I'm just starting to realize that I was diagnosed with cancer 7 1/2 months ago.
The thought of getting used to life the way it used to be is scary because I don't want to tempt fate. I don't want to foolishly start 'living' knowing that my body may betray me again. It's like I'm in this weird limbo... treatment is still so recent but at the same time diagnosis seems so far away. It's like I'm at some pivotal moment in life where staying at this stage is safe but stagnant whereas taking a leap forward is scary but the benefits may be worth it. I feel like I have these unspoken expectations placed upon me to be/feel better because chemo is over when in reality 8 months ago, I didn't even have cancer.
It was like while I was in treatment, being strong and positive were impressive and now it's almost like they are expected. It's like there's an assumption that because the physical effects of cancer are over, the emotional side should follow and somehow I feel like it has just begun. Treatment may be over but cancer certainly isn't.
At one point last week, I felt a little 'cancered' out. I was invited to go to an event that helped spread breast cancer awareness and I just couldn't go. The thought of saying "26... Yep, I know, and it's not in my family history either." one more time made me want to cry, not because I was sad but because I am so much more than my cancer diagnosis that I wanted to talk about anything else. Sometimes, it feels like I am retelling someone else's story because it still hasn't set it that I've had cancer. It feels like I know this person's story so well but the thought of actually having had cancer is beyond my mental capacity.
I want to help every woman out there, especially the young ones who have just found out that they have breast cancer however I have to find some way to balance my needs, with the pressure (that I put on myself) to be a part of absolutely every breast cancer organization, charity, program, group, etc.. When I was diagnosed I didn't know of any other young women with breast cancer; my surgeon, my post-op nurse, and so many around me said "You're the youngest women I've ever heard of" and although I now know I am not alone, I want the next 20something who hears "You have cancer" to know that she is not alone. And, absolutely every young woman that I have met who has had breast cancer wants to get involved and help other young women. I've been amazed over the past couple of weeks with the incredible women that I have met who have made it their personal mission to 'be there' for young women with breast cancer.
So, the point of this entry? You got me! I don't know, I guess it goes back to a few weeks ago when I talked about being there for someone who has been diagnosed with cancer; let her know you are thinking about her. Cancer doesn't end when treatment does. Also, I guess I wanted to let you into my brain and take a look around. This is such a mishmash of thoughts but I can't really make sense of what's going on up in that head of mine so I didn't think it was fair to make it clear for you when it's still so foggy to me.
What I have written so far was going to be my complete entry and then tonight happened and it all made sense...
So, over the past few weeks, I've been really involved in cancer. I'm taking part in a study for memory/chemo, I'm going to groups, I'm volunteering some of my afternoons for fundraising and tonight I spoke at an event of 100-150 people. In other words, I have taken on a lot and I am now paying for it because I am sick. Today, I had to go to the hospital to pick up some reports then headed over to a group meeting for young women with cancer then got home and dealt with some more insurance garbage then had a melt down.
I'm not trying to be dramatic but sometimes I just seem to be overwhelmed and don't want to have to fight insurance anymore, and wish I had a 'normal' life, I want my breast back, I hate that I've had cancer, I hate that I can navigate you through any hospital just because I'm good at and used to figuring out their layouts, I want to substitute my estrogen inhibiting pills with folic acid pills, my hair is awful, and now I'm sick. I had a bit of break-down today and then I had to put on a smile for this event that I was speaking at. So, I headed out, got to the event early, and at 7:40pm they announced that it was my turn to speak.
I get up there and all the saliva from my mouth disappears (luckily someone noticed and gave me a glass of water). I took a drink, made a joke, and kept going. The microphone had about a half second delay so it was hard to speak when all I could hear myself saying was what I had actually said 1/2 second ago. It was hard to speak because it was like you were trying to speak over someone else. Anyway, all that aside, I was well received - I got my story out there and everyone cheered and clapped when I finished. For the rest of the night women were coming over to me saying that I was brave and inspirational which meant so much to me (I promise, there's a point to this).
Anyway, it all wrapped up at 9:30 and as I was walking down the street to meet Keith, I heard "excuse me" from behind me. I stopped and turned around and a young woman approached me and said "I was in there tonight and I heard your story. How did they find out it was cancer?" So, I went over the whole process of the ultrasounds that led to a mammogram and the eventual biopsy. She said "I found a lump a year ago and the doctor said he would monitor it but they won't do a mammogram because I'm so young." I asked her how old she was and she said she was 35. I reassured her that it probably was nothing but told her to tell her doctor that she now knows of someone who is 26 who was diagnosed and you want further testing. I forced my email address on her in case she had any questions or concerns, no matter how small she thought they may be. She said 'because of you, I am getting a mammogram! I need to know what this is."
In that moment all the other cancer bull shit that I had dealt with today disappeared. In that moment when she said that after hearing my story, she was going to get her lump properly checked out, it made it all worth it. Yes, my mouth was dry and yes, the acoustics weren't great but that girl heard my message and she is going to do something about her lump because I shared my story. It's amazing that I went there to 'teach' and I ended up doing more learning than teaching.
Monday, October 17, 2011
Laughing in Cancer's Face
I like to laugh and even more I like to make other people laugh. I was voted 'funniest female' in our graduating year of high school and I take pride in that (in fact, I think I had it on my resume for a while [I'm not even joking]). Any time I have faced something hard in life, I usually turn to humour. Yes, I do use it sometimes as a defense mechanism and to be honest, I think the reason I started to use humour was because of my weight. I wanted people to describe me as the 'funny girl' instead of the 'fat girl'.
In the beginning of my 'journey' (can someone come up with a different word than 'journey', I am tired of using it), humour would be my first reaction after the tears. After I found out I needed a 2nd surgery (that ended up being cancelled thanks to current cancer research) my facebook status was something along the lines of "Touché cancer, well played. Surgery #2 is May 12" or something like that. Did others find that funny? I don't think so. But it helped me deliver shitty news a-la-Katie and made me feel like I was being myself. I just never let cancer change who I was.
I got an e-mail a few days ago from a friend's mom who had been diagnosed with breast cancer a few years ago and she said 'the kids tell me that you have been really positive during this whole thing, good for you.' I was happy to hear that others saw me as being positive and I think I have humour to thank for that. I have used jokes to help me cope with cancer. I never make fun of others, only myself and my situation but I think it makes people feel comfortable in an otherwise uncomfortable situation. So many people don't know what to say, so when I'm still myself and make some crack about dressing up like Uncle Fester this year for Halloween or having to draw on eyebrows in order to see any expression on my face, it puts every one at ease (including me). I feel like saying, "See, I'm still me, I'm just bald and down a breast."
I remember a friend of mine saying that after you have a baby and you're still recovering in the hospital, you get used to people coming into your room and checking out your business' to ensure you're healing alright. That's the way I felt, showing my boobs started feeling the same as showing someone my elbow or foot; it's just another body part. After surgery, every doctor that I saw wanted to do a quick exam of the new ladies (or should I say lady?). Housekeeping would come into the room to change the garbage and they'd get a free show; I was showing them to everyone assuming that they wanted/needed to see them.
After chemo #5, I ended up in Emerg. because of a fever that wouldn't stop climbing. I put the gown on so that it would open at the front. The nurse came in and said "You have that on backwards", I said "You don't want to see my boobs?" in an almost disappointed way. She said "You're here for a fever, we don't need to see your breasts". I took it off and put the opening at the back.
At my niece's 4th birthday dinner, we were all sitting around the table and she randomly said, "Uncle Keith's a boy." and I said, "No, Uncle Keith's a girl." She said, "Well, he's got a boy hair cut." She had me there. In trying to prepare them for me losing my hair, I said "Auntie Katie is going to cut her hair like Uncle Keith really soon." Now, my sister-in-law's mother (my niece and nephew's grandma) had been diagnosed within a year before me, had chemo and radiation, so these kids were not new to the whole breast cancer thing. My 6 year old nephew pipes up about my 'new hair cut' and says "No, it's going to fall out." All 6 of us adults just burst into laughter. Is my hair falling out funny? No. But having a 6 year old tell it how it is was priceless.
I can list endless hardships that I've had to deal with in the past six months; the numbness of the initial diagnosis, the loss of a breast, chemo, the weight gain, the procedures, the psychological mind games, etc. but I still have a smile on my face every day and I have humour to thank for that. I was told last week that I should go on the road with my 'shtick' but I don't know how funny people think it would be. As I said, those around me can laugh because they know me and know that I like being the funny one, I wouldn't be me if I didn't crack a joke about having explosive diarrhea during chemo. I make jokes about having one breast all the time; is a mastectomy funny? Absolutely not, not even one bit but I almost feel like by laughing at it, cancer has lost and I have won. Even taking my breast can't keep me from being me. Cancer may have mutilated my body but nothing can touch my spirit.
I used to use 'the cancer card' to get out of doing house work etc. but that got old fast. I saw it as a way to benefit from a shitty situation; if I have to deal with this garbage disease then I should be able to get out of making dinner every once in a while. If I try it now Keith reminds me that I am now cancer-free so the 'cancer card' is no longer accepted.
I've said it so many times; if 1in 3 people are going to have some form of cancer in their lives and we continue to be so awkward about it, how is anyone going to learn about it. Maybe using humour could help teach people a few things. I'm trying to make a point that I had cancer and it can't stop me from being who I am. But, I want to make a few things clear. First, I have found humour has made MY situation easier to deal with. If I had a different form of cancer or had a different prognosis, I have no idea how I would react to it. I would hope I would still be able to laugh at myself but I have no idea how I would react. At the same time, a year ago, I wouldn't have thought that I would be able to laugh during my current diagnosis, so you never know.
The way I look at it is, being diagnosed with cancer has just provided me with more material. Comedian, I am not but I think humour makes people feel comfortable and I think it makes me feel comfortable so I have used it in the past six months to help cope with my diagnosis. That's not to say that there haven't been tears or times of sadness but for me, if I have to go down this shitty road known as breast cancer, why not try to laugh the majority of the time?
It's all the way you approach life, right? When someone says "You're so young to have had breast cancer" I just tell them that I'm an overachiever; I've accomplished what very few other women in their 20s are able to achieve...
In the beginning of my 'journey' (can someone come up with a different word than 'journey', I am tired of using it), humour would be my first reaction after the tears. After I found out I needed a 2nd surgery (that ended up being cancelled thanks to current cancer research) my facebook status was something along the lines of "Touché cancer, well played. Surgery #2 is May 12" or something like that. Did others find that funny? I don't think so. But it helped me deliver shitty news a-la-Katie and made me feel like I was being myself. I just never let cancer change who I was.
I got an e-mail a few days ago from a friend's mom who had been diagnosed with breast cancer a few years ago and she said 'the kids tell me that you have been really positive during this whole thing, good for you.' I was happy to hear that others saw me as being positive and I think I have humour to thank for that. I have used jokes to help me cope with cancer. I never make fun of others, only myself and my situation but I think it makes people feel comfortable in an otherwise uncomfortable situation. So many people don't know what to say, so when I'm still myself and make some crack about dressing up like Uncle Fester this year for Halloween or having to draw on eyebrows in order to see any expression on my face, it puts every one at ease (including me). I feel like saying, "See, I'm still me, I'm just bald and down a breast."
I remember a friend of mine saying that after you have a baby and you're still recovering in the hospital, you get used to people coming into your room and checking out your business' to ensure you're healing alright. That's the way I felt, showing my boobs started feeling the same as showing someone my elbow or foot; it's just another body part. After surgery, every doctor that I saw wanted to do a quick exam of the new ladies (or should I say lady?). Housekeeping would come into the room to change the garbage and they'd get a free show; I was showing them to everyone assuming that they wanted/needed to see them.
After chemo #5, I ended up in Emerg. because of a fever that wouldn't stop climbing. I put the gown on so that it would open at the front. The nurse came in and said "You have that on backwards", I said "You don't want to see my boobs?" in an almost disappointed way. She said "You're here for a fever, we don't need to see your breasts". I took it off and put the opening at the back.
At my niece's 4th birthday dinner, we were all sitting around the table and she randomly said, "Uncle Keith's a boy." and I said, "No, Uncle Keith's a girl." She said, "Well, he's got a boy hair cut." She had me there. In trying to prepare them for me losing my hair, I said "Auntie Katie is going to cut her hair like Uncle Keith really soon." Now, my sister-in-law's mother (my niece and nephew's grandma) had been diagnosed within a year before me, had chemo and radiation, so these kids were not new to the whole breast cancer thing. My 6 year old nephew pipes up about my 'new hair cut' and says "No, it's going to fall out." All 6 of us adults just burst into laughter. Is my hair falling out funny? No. But having a 6 year old tell it how it is was priceless.
I can list endless hardships that I've had to deal with in the past six months; the numbness of the initial diagnosis, the loss of a breast, chemo, the weight gain, the procedures, the psychological mind games, etc. but I still have a smile on my face every day and I have humour to thank for that. I was told last week that I should go on the road with my 'shtick' but I don't know how funny people think it would be. As I said, those around me can laugh because they know me and know that I like being the funny one, I wouldn't be me if I didn't crack a joke about having explosive diarrhea during chemo. I make jokes about having one breast all the time; is a mastectomy funny? Absolutely not, not even one bit but I almost feel like by laughing at it, cancer has lost and I have won. Even taking my breast can't keep me from being me. Cancer may have mutilated my body but nothing can touch my spirit.
I used to use 'the cancer card' to get out of doing house work etc. but that got old fast. I saw it as a way to benefit from a shitty situation; if I have to deal with this garbage disease then I should be able to get out of making dinner every once in a while. If I try it now Keith reminds me that I am now cancer-free so the 'cancer card' is no longer accepted.
I've said it so many times; if 1in 3 people are going to have some form of cancer in their lives and we continue to be so awkward about it, how is anyone going to learn about it. Maybe using humour could help teach people a few things. I'm trying to make a point that I had cancer and it can't stop me from being who I am. But, I want to make a few things clear. First, I have found humour has made MY situation easier to deal with. If I had a different form of cancer or had a different prognosis, I have no idea how I would react to it. I would hope I would still be able to laugh at myself but I have no idea how I would react. At the same time, a year ago, I wouldn't have thought that I would be able to laugh during my current diagnosis, so you never know.
The way I look at it is, being diagnosed with cancer has just provided me with more material. Comedian, I am not but I think humour makes people feel comfortable and I think it makes me feel comfortable so I have used it in the past six months to help cope with my diagnosis. That's not to say that there haven't been tears or times of sadness but for me, if I have to go down this shitty road known as breast cancer, why not try to laugh the majority of the time?
It's all the way you approach life, right? When someone says "You're so young to have had breast cancer" I just tell them that I'm an overachiever; I've accomplished what very few other women in their 20s are able to achieve...
Tuesday, October 11, 2011
Pinktober
This October has a whole new meaning for me. October, as many of you know is Breast Cancer Awareness Month and up until 2011, it has had much less of an impact on me. I have always been a fan of pink but I am certainly more conscious of it now. Wearing my pink wig to chemo meant I was a supporter of all women (and men) going through breast cancer but it also represented me kicking cancer's ass. Now, when I see someone wearing a pink ribbon, I feel supported or feel like I have some connection with that person because he or she has felt the effects, whether it was directly or indirectly, of breast cancer.
What actually is breast cancer awareness? Does wearing a pink ribbon signify that you are actually aware? What do people mean when they say they are promoting awareness? Does being aware of the disease provide you with the knowledge to arm yourself against breast cancer? Do you know how to give yourself a self-examination and if you found a lump would you know what to do? Awareness is more than the colour pink and buying something like mushrooms that have pink ribbon packaging doesn't make me aware. Does buying items that support breast cancer organizations who provide awareness programs, funding, and outreach initiatives make the consumer aware?
There is talk about reclaiming October; so many people on social networks are outraged by 'Pinktober' because it overshadows the other awareness months. How many people knew that September was Ovarian Awareness Month?, probably not that many. In October, the whole world seems to turn pink; NFL players wear pink, 'breast cancer' is plastered everywhere and grocery stores start selling things like fruit trays in the form of pink ribbons (not joking, saw it with my own two eyes last week). Now, I've always been one to be conscious, even prior to my diagnosis, not to buy something based on a product stating they 'support cancer research/funding/awareness'. My 6 year old nephew supports all those things, it doesn't mean he donates any money to them. Just because a product supports a program or charity doesn't mean that by buying that product, any money is going to be donated to the cause. There is also sometimes a limit. So, a company can say "$1 from the purchase of every (insert product here) will go towards (insert group here)', however it can say in fine print "up until $10000 is reached" but they continue to sell the product with the pink ribbon and get 100% of the profit because their maximum has been reached.
Take the fruit tray for example, there was nothing different about the pink ribbon fruit tray compared to the yellow round fruit tray beside it but the company who makes them are going to sell more pink ribbon fruit trays because of what it represents. Is that smart on their part? Absolutely! Is it right? Maybe not. Breast cancer sells and companies know that. And, who could possibly look down on a company for supporting the pink ribbon? Right? Again, maybe not! I think a lot of the argument is, if you want to support breast cancer research, why not donate directly to it? Why buy a product that is going to donate $0.50 to a charity (the specific product that I am thinking of supports an American charity which is fine except I am going to benefit more from research and studies done in Canada) instead of donating $5 to the charity of your choice? Or instead, get involved yourself. You don't have to have had cancer to be a volunteer for a cancer organization. This way you know 100% of your support is going towards the cause not into a company's pocket. There's a belief that activism was replaced by consumerism and it's money that 'they're' after not awareness.
In my case, I felt like I wasn't aware. I am a well educated girl but I assumed that breast cancer didn't happen to women in their 20s. After I was diagnosed, I thought I was going to be in textbooks and world record books for being the youngest person diagnosed. Then, I find out that I am far from alone. I don't think awareness among young women is properly funded or supported. It wasn't easy for me to find any information about women in their 20s getting breast cancer and quite frankly all I heard was "26? You're so young to get breast cancer." You're telling me! Now walking the line between needing more funding for awareness among young women and needing funding for women like me who have been diagnosed, I don't know the appropriate division of funds.
There was a recent magazine article that stated that less than 40% of all money raised goes to actual research. I see that this stat can be bothersome however, with no money raised, no money goes towards research and charities can't run themselves. I don't have a huge problem with this because without the charity, group, etc. there would be no money donated. This is assuming that there isn't a frivolous amount going to overhead and that no one is becoming a millionaire while posing as an activist for the cause. Volunteers do a lot but there are still employees, costs for programs, events, bills for the headquarters (rent, etc.) so I think it's a little naive to assume that all money raised will go directly towards research. Research saved me from a second surgery a week before my surgery date so I realize the importance of it but without money going to support the financial needs of the organization there would be no organization to support any research. Maybe it should be made public where the funding goes and the break-down of the allocation of all the money raised, that way someone could make an informed decision of if they want to donate and to whom they want to make the donation.
Some think that the pink ribbon has taken away from the severity of it all, that being represented by a cute little, pink, perfect ribbon doesn't represent breast cancer properly or the way it should. Wrapping breast cancer up in a pink ribbon can give the impression that it's not as severe as other cancers. Breast cancer isn't always curable, many people die from it and have people forgotten that is it cancer? What about metastatic breast cancer? I've read that as many as 1/3 of all breast cancers can become metastatic and if that's the case then why isn't there more funding/focus on it? I didn't even know what that was prior to being diagnosed. If you want to be aware then look it up. Some (maybe even most) 'pink' money is going to awareness but what about the women (and men) who are already diagnosed, how does the money generated from the pink ribbon go to help them? Does the pink ribbon focus on those without breast cancer (awareness, early detection, screening, prevention) rather than those who have been diagnosed?
I've heard the same thing about calling breasts anything other than breasts like boobs, knockers, tatas, (you get the point), by calling breasts 'cute names' it takes away from the severity of breast cancer. I realize I'm a newbie to this whole thing and maybe in 2-5-10 years I will feel a whole lot differently but for right now, I don't care what you call them, if money is raised and it brings awareness to young women then call them whatever you want.
I am trying to present the argument that is out there right now about the pink ribbon but I don't necessarily believe that Breast Cancer Awareness Month represents evil the way some people seem to perceive it. I think there is some truth with being inundated with pink in the month of October and that it makes us a little apathetic and overwhelmed. It's like we are used to it and it gives the illusion of being aware of breast cancer (prevention, screening, symptoms, stats, research, funding, odds, etc.) when really we are just aware that pink signifies breast cancer. I also think that some people put a little too much pressure on the pink ribbon. There is a difference between what it was initially created to do and what it has been manipulated into representing. I have seen some pretty angry individuals who think the pink ribbon should be destroyed and never heard from again but isn't it the message that needs to change not necessarily the medium. It is (one of) the most recognizable symbols for a disease and you want to start all over? I would rather put my energy into making all other coloured ribbons equally as recognizable than starting all over with the most popular.
Again, I am new to breast cancer and the pink ribbon has a whole new significance to me but the way I see it; we need to educate the general public about the consumerism of the pink ribbon, the importance of knowing how your donation is being allocated and the true meaning of awareness.
What actually is breast cancer awareness? Does wearing a pink ribbon signify that you are actually aware? What do people mean when they say they are promoting awareness? Does being aware of the disease provide you with the knowledge to arm yourself against breast cancer? Do you know how to give yourself a self-examination and if you found a lump would you know what to do? Awareness is more than the colour pink and buying something like mushrooms that have pink ribbon packaging doesn't make me aware. Does buying items that support breast cancer organizations who provide awareness programs, funding, and outreach initiatives make the consumer aware?
There is talk about reclaiming October; so many people on social networks are outraged by 'Pinktober' because it overshadows the other awareness months. How many people knew that September was Ovarian Awareness Month?, probably not that many. In October, the whole world seems to turn pink; NFL players wear pink, 'breast cancer' is plastered everywhere and grocery stores start selling things like fruit trays in the form of pink ribbons (not joking, saw it with my own two eyes last week). Now, I've always been one to be conscious, even prior to my diagnosis, not to buy something based on a product stating they 'support cancer research/funding/awareness'. My 6 year old nephew supports all those things, it doesn't mean he donates any money to them. Just because a product supports a program or charity doesn't mean that by buying that product, any money is going to be donated to the cause. There is also sometimes a limit. So, a company can say "$1 from the purchase of every (insert product here) will go towards (insert group here)', however it can say in fine print "up until $10000 is reached" but they continue to sell the product with the pink ribbon and get 100% of the profit because their maximum has been reached.
Take the fruit tray for example, there was nothing different about the pink ribbon fruit tray compared to the yellow round fruit tray beside it but the company who makes them are going to sell more pink ribbon fruit trays because of what it represents. Is that smart on their part? Absolutely! Is it right? Maybe not. Breast cancer sells and companies know that. And, who could possibly look down on a company for supporting the pink ribbon? Right? Again, maybe not! I think a lot of the argument is, if you want to support breast cancer research, why not donate directly to it? Why buy a product that is going to donate $0.50 to a charity (the specific product that I am thinking of supports an American charity which is fine except I am going to benefit more from research and studies done in Canada) instead of donating $5 to the charity of your choice? Or instead, get involved yourself. You don't have to have had cancer to be a volunteer for a cancer organization. This way you know 100% of your support is going towards the cause not into a company's pocket. There's a belief that activism was replaced by consumerism and it's money that 'they're' after not awareness.
In my case, I felt like I wasn't aware. I am a well educated girl but I assumed that breast cancer didn't happen to women in their 20s. After I was diagnosed, I thought I was going to be in textbooks and world record books for being the youngest person diagnosed. Then, I find out that I am far from alone. I don't think awareness among young women is properly funded or supported. It wasn't easy for me to find any information about women in their 20s getting breast cancer and quite frankly all I heard was "26? You're so young to get breast cancer." You're telling me! Now walking the line between needing more funding for awareness among young women and needing funding for women like me who have been diagnosed, I don't know the appropriate division of funds.
There was a recent magazine article that stated that less than 40% of all money raised goes to actual research. I see that this stat can be bothersome however, with no money raised, no money goes towards research and charities can't run themselves. I don't have a huge problem with this because without the charity, group, etc. there would be no money donated. This is assuming that there isn't a frivolous amount going to overhead and that no one is becoming a millionaire while posing as an activist for the cause. Volunteers do a lot but there are still employees, costs for programs, events, bills for the headquarters (rent, etc.) so I think it's a little naive to assume that all money raised will go directly towards research. Research saved me from a second surgery a week before my surgery date so I realize the importance of it but without money going to support the financial needs of the organization there would be no organization to support any research. Maybe it should be made public where the funding goes and the break-down of the allocation of all the money raised, that way someone could make an informed decision of if they want to donate and to whom they want to make the donation.
Some think that the pink ribbon has taken away from the severity of it all, that being represented by a cute little, pink, perfect ribbon doesn't represent breast cancer properly or the way it should. Wrapping breast cancer up in a pink ribbon can give the impression that it's not as severe as other cancers. Breast cancer isn't always curable, many people die from it and have people forgotten that is it cancer? What about metastatic breast cancer? I've read that as many as 1/3 of all breast cancers can become metastatic and if that's the case then why isn't there more funding/focus on it? I didn't even know what that was prior to being diagnosed. If you want to be aware then look it up. Some (maybe even most) 'pink' money is going to awareness but what about the women (and men) who are already diagnosed, how does the money generated from the pink ribbon go to help them? Does the pink ribbon focus on those without breast cancer (awareness, early detection, screening, prevention) rather than those who have been diagnosed?
I've heard the same thing about calling breasts anything other than breasts like boobs, knockers, tatas, (you get the point), by calling breasts 'cute names' it takes away from the severity of breast cancer. I realize I'm a newbie to this whole thing and maybe in 2-5-10 years I will feel a whole lot differently but for right now, I don't care what you call them, if money is raised and it brings awareness to young women then call them whatever you want.
I am trying to present the argument that is out there right now about the pink ribbon but I don't necessarily believe that Breast Cancer Awareness Month represents evil the way some people seem to perceive it. I think there is some truth with being inundated with pink in the month of October and that it makes us a little apathetic and overwhelmed. It's like we are used to it and it gives the illusion of being aware of breast cancer (prevention, screening, symptoms, stats, research, funding, odds, etc.) when really we are just aware that pink signifies breast cancer. I also think that some people put a little too much pressure on the pink ribbon. There is a difference between what it was initially created to do and what it has been manipulated into representing. I have seen some pretty angry individuals who think the pink ribbon should be destroyed and never heard from again but isn't it the message that needs to change not necessarily the medium. It is (one of) the most recognizable symbols for a disease and you want to start all over? I would rather put my energy into making all other coloured ribbons equally as recognizable than starting all over with the most popular.
Again, I am new to breast cancer and the pink ribbon has a whole new significance to me but the way I see it; we need to educate the general public about the consumerism of the pink ribbon, the importance of knowing how your donation is being allocated and the true meaning of awareness.
Monday, October 3, 2011
I Just Have Cancer
Last night, I was cooking with garlic and the smell took me back to my second year of university (you know how a scent can take you away to a memory and it's like you're living in that moment for just a few seconds?). It was a great year full of parties, drinking, balancing a job with school, self awareness and 2 breasts. I swear, I was in that moment for 3 seconds last night and it felt amazing. Unfortunately when I came back to reality, I came back to cancer.
Friday would have been a chemo day but like I said on my facebook 'I don't do that anymore, I quit cold turkey.' I've spent this past week looking back at the past 6 months, what I've accomplished, how I approached things, etc. I wanted to write a little bit about the beginning of my diagnosis. I was diagnosed in March and started writing in June so I wanted to go back to the start of my journey.
I remember the day of diagnosis; I haven't really talked about it because it seemed like the one thing I couldn't talk about. I kind of felt embarrassed, because it was like I thought I had some control over what the doctor was going to say and 'cancer' was not supposed to be part of her script. Keith and I were supposed to go on the Monday to hear my results from my surgeon but that appointment was cancelled so I had to reschedule with my family doctor for the previous Friday. Keith had to work that day so I called my mom and asked if she could come with me. My mom lives four hours away but the 'what-if' inside me felt like it was necessary to ask her to make the drive. She came up the Thursday night and planned on leaving Saturday morning.
On the Friday morning, I got up and got in the shower. I remember thinking 'it's cancer' but of course all signs pointed to 'no'; my radiologist said she was 99% sure it was nothing, my surgeon said 'don't worry, you don't have cancer', my age, and of course I have no family history of it. I got out of the shower and asked my mom if she thought that a cancer diagnosis was karma's way of 'paying me back' for any pain I'd caused anyone in my 26 years. She said "NO!" in an annoyed 'you don't have cancer and why are you saying things like that' kind of way.
We drove to the appointment. Rihanna's 'What's my name' was playing in the pharmacy on the bottom floor of my doctor's office building. We got on the elevator and I could have thrown up with fear. I was vibrating in my chair in the waiting room. My name was FINALLY called and I walked past the room I normally go into to get my blood pressure taken and asked why I had booked an appointment. That was clue #1, this isn't normal. My mom was trying to talk to me about anything that would take my mind off cancer but I wasn't listening.
The doctor finally came in and started asking how I did with the biopsy knowing that I am petrifed of needles. My answers were really short and I said "I just need to know the results." She said "it isn't good, it's breast cancer." You know that feeling when you have just been caught doing something you weren't supposed to, it's like when guilt takes over your whole body and you feel numb, scared, embarrassed, and breathless all at once? It was kind of like that. I wanted to say 'No, No, you've grabbed the wrong file. It's Katherine Evans, E-V-A-N...." but what came out was "Holy shit, I wasn't expecting that." I was kind of mad at myself that I asked my mom to come with me because all I kept thinking was "she doesn't need this right now." Her mouth was wide open in shock and she came over, hugged me and rubbed my back. To be honest, I didn't cry. I think I still thought they had the wrong file.
The doctor told me that I would need surgery, chemo, and radiation. I called the surgeon from the doctor's office to make an appointment. My mom and I walked out of there and once we got to the car, I called Keith. In retrospect, I would have broken the news a little differently but instead, when he said "Hello" I said, "Well, I have cancer". I then called my dad; we were both on our cell phones. It was one of those conversations where there was just enough delay that we kept talking over each other and finally I just blurted out "I have cancer'. I wish I could take that one back. You just never plan on how you're going to tell someone about your cancer diagnosis, and evidently, I could have used a little practice. Needless to say, my mom stayed until the Monday.
Next was the mastectomy. Prior to surgery, I knew what a mastectomy looked like but I guess I just though it would look differently on me. And to be honest, I wanted that shit out of my body that I didn't care what they took and what was left afterwards. One of my friends said "I always thought you'd be the last one to get a boob job" - didn't we all? (I had 'huge' boobs prior to surgery).
After surgery, I had an idea of what the future held for me and I could start getting my affairs in order. I called OSAP to let them know that I wasn't working anymore and needed to lower my payment. The guy I was talking to said that because I was on E.I. and therefore still had an income, I would have to continue to make payments. I asked if there was any program set up for people who were sick. He said something about a long term disability program that they had in place and I remember saying 'I'm not disabled, I just have cancer'. After I said it, I thought 'just have cancer?' people 'just have colds' but no one 'just has cancer'.
Up until my last chemo, I had the mentality that I did 'just have cancer' and that allowed me to deal with the day to day issues and not the severity of it all. I was so focused on getting through each day without throwing up, or focusing on going farther than the mailbox to satisfy my 'leaving the house mission', and not focusing on what cancer was capable of. When I said the words "I have cancer" it felt like I was lying. It felt like I was telling the story of someone I knew or a dream I had. 'Cancer' no longer means the division of rogue cells once you're diagnosed with it, it takes on a meaning that far exceeds the medical one and to this day, I still find it hard to think about the day I was diagnosis. It was the day everything changed, the day my body betrayed me, the day I wasn't invincible anymore.
Here's to Breast Cancer Awareness Month- Check your breasts via self examination, a breast exam from your doctor, or book your mammogram if you're old enough. If you find a lump, don't ignore it, early detection is key.
Friday would have been a chemo day but like I said on my facebook 'I don't do that anymore, I quit cold turkey.' I've spent this past week looking back at the past 6 months, what I've accomplished, how I approached things, etc. I wanted to write a little bit about the beginning of my diagnosis. I was diagnosed in March and started writing in June so I wanted to go back to the start of my journey.
I remember the day of diagnosis; I haven't really talked about it because it seemed like the one thing I couldn't talk about. I kind of felt embarrassed, because it was like I thought I had some control over what the doctor was going to say and 'cancer' was not supposed to be part of her script. Keith and I were supposed to go on the Monday to hear my results from my surgeon but that appointment was cancelled so I had to reschedule with my family doctor for the previous Friday. Keith had to work that day so I called my mom and asked if she could come with me. My mom lives four hours away but the 'what-if' inside me felt like it was necessary to ask her to make the drive. She came up the Thursday night and planned on leaving Saturday morning.
On the Friday morning, I got up and got in the shower. I remember thinking 'it's cancer' but of course all signs pointed to 'no'; my radiologist said she was 99% sure it was nothing, my surgeon said 'don't worry, you don't have cancer', my age, and of course I have no family history of it. I got out of the shower and asked my mom if she thought that a cancer diagnosis was karma's way of 'paying me back' for any pain I'd caused anyone in my 26 years. She said "NO!" in an annoyed 'you don't have cancer and why are you saying things like that' kind of way.
We drove to the appointment. Rihanna's 'What's my name' was playing in the pharmacy on the bottom floor of my doctor's office building. We got on the elevator and I could have thrown up with fear. I was vibrating in my chair in the waiting room. My name was FINALLY called and I walked past the room I normally go into to get my blood pressure taken and asked why I had booked an appointment. That was clue #1, this isn't normal. My mom was trying to talk to me about anything that would take my mind off cancer but I wasn't listening.
The doctor finally came in and started asking how I did with the biopsy knowing that I am petrifed of needles. My answers were really short and I said "I just need to know the results." She said "it isn't good, it's breast cancer." You know that feeling when you have just been caught doing something you weren't supposed to, it's like when guilt takes over your whole body and you feel numb, scared, embarrassed, and breathless all at once? It was kind of like that. I wanted to say 'No, No, you've grabbed the wrong file. It's Katherine Evans, E-V-A-N...." but what came out was "Holy shit, I wasn't expecting that." I was kind of mad at myself that I asked my mom to come with me because all I kept thinking was "she doesn't need this right now." Her mouth was wide open in shock and she came over, hugged me and rubbed my back. To be honest, I didn't cry. I think I still thought they had the wrong file.
The doctor told me that I would need surgery, chemo, and radiation. I called the surgeon from the doctor's office to make an appointment. My mom and I walked out of there and once we got to the car, I called Keith. In retrospect, I would have broken the news a little differently but instead, when he said "Hello" I said, "Well, I have cancer". I then called my dad; we were both on our cell phones. It was one of those conversations where there was just enough delay that we kept talking over each other and finally I just blurted out "I have cancer'. I wish I could take that one back. You just never plan on how you're going to tell someone about your cancer diagnosis, and evidently, I could have used a little practice. Needless to say, my mom stayed until the Monday.
Next was the mastectomy. Prior to surgery, I knew what a mastectomy looked like but I guess I just though it would look differently on me. And to be honest, I wanted that shit out of my body that I didn't care what they took and what was left afterwards. One of my friends said "I always thought you'd be the last one to get a boob job" - didn't we all? (I had 'huge' boobs prior to surgery).
After surgery, I had an idea of what the future held for me and I could start getting my affairs in order. I called OSAP to let them know that I wasn't working anymore and needed to lower my payment. The guy I was talking to said that because I was on E.I. and therefore still had an income, I would have to continue to make payments. I asked if there was any program set up for people who were sick. He said something about a long term disability program that they had in place and I remember saying 'I'm not disabled, I just have cancer'. After I said it, I thought 'just have cancer?' people 'just have colds' but no one 'just has cancer'.
Up until my last chemo, I had the mentality that I did 'just have cancer' and that allowed me to deal with the day to day issues and not the severity of it all. I was so focused on getting through each day without throwing up, or focusing on going farther than the mailbox to satisfy my 'leaving the house mission', and not focusing on what cancer was capable of. When I said the words "I have cancer" it felt like I was lying. It felt like I was telling the story of someone I knew or a dream I had. 'Cancer' no longer means the division of rogue cells once you're diagnosed with it, it takes on a meaning that far exceeds the medical one and to this day, I still find it hard to think about the day I was diagnosis. It was the day everything changed, the day my body betrayed me, the day I wasn't invincible anymore.
Here's to Breast Cancer Awareness Month- Check your breasts via self examination, a breast exam from your doctor, or book your mammogram if you're old enough. If you find a lump, don't ignore it, early detection is key.
Monday, September 26, 2011
Psychological Healing
It feels so good not to live my life in 3 week, chemo-based, increments anymore. I feel like I can plan a little for the future and not have to cram everything into two week periods before I'm laid up from chemo again. I am well into my Christmas shopping and planning my weekends in October and November without having to keep my bowel activity in mind.
I am still far from 'normal' but things are looking up. My hair is growing back and I've started using shampoo AND conditioner, my stupid armpit hair is growing back as well (too much information??), but my eyelashes and eyebrows are still MIA. I still get stared at but keep in mind, I'm 6 feet tall, queen size is an understatement, and I'm bald; people are going to stare. In the beginning, the staring didn't bother me because I was very conscience of being bald; I was checking myself out in a mirror every chance I got. But as I got used to my bald head and strangers continued to stare, I kind of got annoyed. I wanted to go over to them and say 'yes, it's cancer' but instead I just kept walking. It took me a while to realize that not everyone staring was doing it out of ignorance, I'm sure some were looking at me thinking of a loved one who had gone through chemo, and maybe others were thinking that I was brave leaving the house with my bald head uncovered.
Someone mentioned to me that I should go over to the gawkers and say, very seriously, 'do you have any questions?' and I loved the thought of that. Those who are ignorantly looking at me probably do have a lot of questions about cancer, and chemo, and being bald, etc. etc. etc. and wouldn't it be awesome to be able to answer those questions right on the spot (although, who would say 'yes, actually, I do have a few questions...'?).
Having cancer has made me re-evaluate my reaction to otherwise frustrating situations. When someone cuts you off on the way home maybe he was preoccupied because his doctor just told him he had cancer. When someone doesn't hold the door open for you when your hands are full, maybe that person is thinking about his/her daughter that's in chemo who he/she can't be with her every day. When someone screws up your morning coffee, maybe she is thinking about the lump she found this morning in the shower. If 1 in 3 people will have cancer, imagine how many people are affected by it. Maybe when people are staring at me, they are admiring the way I'm kicking ass.
Keith and I were talking about the day that I was diagnosed last night. He said that he remembers thinking about the long road that we had ahead of us and now look at where we are, I finished chemo and am starting to heal. I had a bit of a cry tonight as I looked back at the past 6 months. It's almost like when you're going through it, you don't realize the severity of it all but looking back it sets in a little bit. I think of those days that felt like years, the days that felt like no matter what I did, I was going to feel deflated and alone and 'sick' for the rest of my life; I can safely say, chemo was the scariest time of my life.
I have learned a lot that can't be understood unless you've gone through a cancer diagnosis/treatment and I think anyone who has been through it 'just gets it' and those who haven't 'just don't', and by 'just don't' I guess I should say 'just can't'. I was prepared for the physical reaction to chemo but not the psychological. If you know someone who is going through or has gone through cancer (the psychological healing is lifelong - it doesn't end when treatment ends) please call them or send them a card this week. Tell them that you are thinking about them and ask them if there is anything you can do for them. Better yet, just do something nice for them because the odds of them asking for anything is slim to none. Many times, I felt helpless and asking for help would have made me feel worse but having something nice done for me without having to ask felt so good.
I had many friends checking in on me throughout chemo and as I have said many times before, my support was incredible but there were many friends who called once or not at all. To be fair, many friends just don't/can't get it (how would they if they'd never been there) but having gone through it, if I can pass on any advice to those caregivers or friends of patients; let them know that you are thinking about them, let them know that you will be there from the day of diagnosis, to chemo graduation day, from the first doctor's appointment to the last day of Tamoxifen, from the first day without a breast to the last breath. I just think that if I wasn't warned about the psychological part of cancer, how can someone without cancer know about it?
I have recently joined Twitter (lovlykatielumps) and I am amazed at the network of (breast) cancer survivors that exist on this medium. It's not only amazing how many young women are affected by breast cancer but it blows me away how strong they are. It's like when the cancer/treatment made them physically weaker it made them mental/emotional stronger at the same time.
Women in their 20s with breast cancer is not a group I wanted to belong to however, now that I am a member, I am honoured to fight with these women (you know I'm talking about you two especially, Terri and Catherine).
Side Note - here is the link to the commercial that I was in for the Canadian Breast Cancer Foundation. http://vimeo.com/29012433 and the password is 'katie'.
I am still far from 'normal' but things are looking up. My hair is growing back and I've started using shampoo AND conditioner, my stupid armpit hair is growing back as well (too much information??), but my eyelashes and eyebrows are still MIA. I still get stared at but keep in mind, I'm 6 feet tall, queen size is an understatement, and I'm bald; people are going to stare. In the beginning, the staring didn't bother me because I was very conscience of being bald; I was checking myself out in a mirror every chance I got. But as I got used to my bald head and strangers continued to stare, I kind of got annoyed. I wanted to go over to them and say 'yes, it's cancer' but instead I just kept walking. It took me a while to realize that not everyone staring was doing it out of ignorance, I'm sure some were looking at me thinking of a loved one who had gone through chemo, and maybe others were thinking that I was brave leaving the house with my bald head uncovered.
Someone mentioned to me that I should go over to the gawkers and say, very seriously, 'do you have any questions?' and I loved the thought of that. Those who are ignorantly looking at me probably do have a lot of questions about cancer, and chemo, and being bald, etc. etc. etc. and wouldn't it be awesome to be able to answer those questions right on the spot (although, who would say 'yes, actually, I do have a few questions...'?).
Having cancer has made me re-evaluate my reaction to otherwise frustrating situations. When someone cuts you off on the way home maybe he was preoccupied because his doctor just told him he had cancer. When someone doesn't hold the door open for you when your hands are full, maybe that person is thinking about his/her daughter that's in chemo who he/she can't be with her every day. When someone screws up your morning coffee, maybe she is thinking about the lump she found this morning in the shower. If 1 in 3 people will have cancer, imagine how many people are affected by it. Maybe when people are staring at me, they are admiring the way I'm kicking ass.
Keith and I were talking about the day that I was diagnosed last night. He said that he remembers thinking about the long road that we had ahead of us and now look at where we are, I finished chemo and am starting to heal. I had a bit of a cry tonight as I looked back at the past 6 months. It's almost like when you're going through it, you don't realize the severity of it all but looking back it sets in a little bit. I think of those days that felt like years, the days that felt like no matter what I did, I was going to feel deflated and alone and 'sick' for the rest of my life; I can safely say, chemo was the scariest time of my life.
I have learned a lot that can't be understood unless you've gone through a cancer diagnosis/treatment and I think anyone who has been through it 'just gets it' and those who haven't 'just don't', and by 'just don't' I guess I should say 'just can't'. I was prepared for the physical reaction to chemo but not the psychological. If you know someone who is going through or has gone through cancer (the psychological healing is lifelong - it doesn't end when treatment ends) please call them or send them a card this week. Tell them that you are thinking about them and ask them if there is anything you can do for them. Better yet, just do something nice for them because the odds of them asking for anything is slim to none. Many times, I felt helpless and asking for help would have made me feel worse but having something nice done for me without having to ask felt so good.
I had many friends checking in on me throughout chemo and as I have said many times before, my support was incredible but there were many friends who called once or not at all. To be fair, many friends just don't/can't get it (how would they if they'd never been there) but having gone through it, if I can pass on any advice to those caregivers or friends of patients; let them know that you are thinking about them, let them know that you will be there from the day of diagnosis, to chemo graduation day, from the first doctor's appointment to the last day of Tamoxifen, from the first day without a breast to the last breath. I just think that if I wasn't warned about the psychological part of cancer, how can someone without cancer know about it?
I have recently joined Twitter (lovlykatielumps) and I am amazed at the network of (breast) cancer survivors that exist on this medium. It's not only amazing how many young women are affected by breast cancer but it blows me away how strong they are. It's like when the cancer/treatment made them physically weaker it made them mental/emotional stronger at the same time.
Women in their 20s with breast cancer is not a group I wanted to belong to however, now that I am a member, I am honoured to fight with these women (you know I'm talking about you two especially, Terri and Catherine).
Side Note - here is the link to the commercial that I was in for the Canadian Breast Cancer Foundation. http://vimeo.com/29012433 and the password is 'katie'.
Thursday, September 15, 2011
My New 'Normal'
I did it, I have completed six treatments and survived the scariest adventure I've ever been on. I feel as though a huge chapter has just closed and now I wonder what I should write about. The past 4 months of entries have been kind of chemo driven and now I'm on the 'other side'.
I'm still dealing with some of the side effects of Friday's chemo; my bowels are still confused, my bones are sore and today the thrush is the worst its been, but the end is in sight. Next week will be the first week that I can focus on healing for the future, not just healing 'well enough' until my next chemo. I'm looking forward to going to see my co-workers, some friends, maybe going to a mall and just walking around (I was an avid shoppers prior to my diagnosis), oh, and getting a pedicure (I've only ever had 2 in my life but I was pretty annoyed to find out I couldn't get them while I was in chemo because of the risk of infection) and being involved in society again. I think every one around me is looking forward to having things go back to 'normal' because although I was the only one who had cancer, I wasn't the only one diagnosed.
Although I was the one physical enduring surgery, recovery, treatment and all the tests and procedures that come along with a cancer diagnosis, my family and friends endured a lot of the psychological side of cancer. Keith knows more about breast cancer than any 34 year old man should. Last night for example, he walked out of the bedroom (where I was laying down) and I started to cry because I was 'hurt'. By something he said? No. By something he did? No. Do I have any idea? No. I don't know if it is the chemo, the emotions that come along with cancer, or just being a woman but I was crying and I was hurt and I'll be damned if he was getting off the hook for it. He came back in the room, sat down beside me and frustratingly tried to figure out what he had done. We never solved the mystery and I realize on days like yesterday, how lucky I am to have him by my side. He has dealt with many different aspects of cancer and unfortunately has had to deal with the emotional girlfriend that he inherited on March 11th, too. I look forward to when "how are you feeling" is a question he asks during my pregnancy and not my chemo.
So now that six months have passed, and I have one less breast, 7 fewer lymph nodes, a whole lot less cancer, and a wealth of knowledge, what do I do? Well, medically, I see my oncologist on the fourth of October, I get set up with Hormone Replacement Therapy, ride the wave of those side effects, heal, and have my implant switcheroo surgery in December or January (oh, and fight the insurance company while I'm at it). And, mentally, I continue to surround myself with great people and keep the love and support close to my heart.
I would love to write a book, the same book that I was looking for when I was diagnosed; a book about cancer in your 20s, although no harder than cancer in your 50s, it's different. When I was first diagnosed, any literature devoted to breast cancer seemed to be geared towards women in their 50s or at the earliest 40s. I want to write about losing a breast in your 20s and when it's so much a part of your sexuality, fertility options and how we made our decision, about not having the option to breast feed if I am ever given the opportunity, about positivity and hope, about support and encouragement and how even the small things make a world of difference in the life of someone dealing with cancer. I have some pretty amazing friends who have done some pretty amazing things and I would love to pass on some stories and maybe be the positive person in someone else's life.
I have listed some of the incredible things that have been done for me in the past 6 months between Team Katie at the Relay for Life, the benefit that was thrown for me, and the family reunion where everyone wore pink in my honour, but one friend in particular has taught me so much about friendship and selflessness. I hadn't spoken to her in years but she was sure to have flowers waiting in my hospital room after surgery. She sent me cards, and constantly sent me words of encouragement along the way. She baked me cookies, and visited me while I was recovering. She has been that person who exemplifies 'that one person' who stands by you when you need it the most. One of her most recent 'acts' was an "Encouragement Jar" that has over 30 pieces of coloured paper folded up inside of it. Each piece has something written on it that has made me smile or cry, and has encouraged me along the way. One of the most recent ones said "Remember when we drove to Quebec and sang Little Mermaid songs the whole way? 'I wanna be where the people are...'" That made me smile, no, that made me laugh out loud. Others had inspirational quotes on them, while others are still unread as I know I will need encouragement along the way (even though it is so tempting to read them all at once). I want to pass some of her kindness onto others.
I would LOVE to be a motivational speaker. I don't know how you exactly apply for that job. Who do I send a resume to? Oh hi, my name is Katie, I've had cancer and was really positive during the whole process, would you like to fund a 'tour' across Canada so that I can talk to people/students/women about (life, cancer, education, motivation, encouragement, positivity, etc.)? None the less, I would love to do that...
So what is my new normal? I have no idea. I might be able to answer that in a couple of years. This next year is going to be a whole lot of firsts; first October without a breast, first Christmas post-cancer, first anniversary after my diagnosis, etc. and along with those firsts will come more lessons and more learning. As much as I would like to go back to my 'old normal', I'm kind of looking forward to my new one.
I'm still dealing with some of the side effects of Friday's chemo; my bowels are still confused, my bones are sore and today the thrush is the worst its been, but the end is in sight. Next week will be the first week that I can focus on healing for the future, not just healing 'well enough' until my next chemo. I'm looking forward to going to see my co-workers, some friends, maybe going to a mall and just walking around (I was an avid shoppers prior to my diagnosis), oh, and getting a pedicure (I've only ever had 2 in my life but I was pretty annoyed to find out I couldn't get them while I was in chemo because of the risk of infection) and being involved in society again. I think every one around me is looking forward to having things go back to 'normal' because although I was the only one who had cancer, I wasn't the only one diagnosed.
Although I was the one physical enduring surgery, recovery, treatment and all the tests and procedures that come along with a cancer diagnosis, my family and friends endured a lot of the psychological side of cancer. Keith knows more about breast cancer than any 34 year old man should. Last night for example, he walked out of the bedroom (where I was laying down) and I started to cry because I was 'hurt'. By something he said? No. By something he did? No. Do I have any idea? No. I don't know if it is the chemo, the emotions that come along with cancer, or just being a woman but I was crying and I was hurt and I'll be damned if he was getting off the hook for it. He came back in the room, sat down beside me and frustratingly tried to figure out what he had done. We never solved the mystery and I realize on days like yesterday, how lucky I am to have him by my side. He has dealt with many different aspects of cancer and unfortunately has had to deal with the emotional girlfriend that he inherited on March 11th, too. I look forward to when "how are you feeling" is a question he asks during my pregnancy and not my chemo.
So now that six months have passed, and I have one less breast, 7 fewer lymph nodes, a whole lot less cancer, and a wealth of knowledge, what do I do? Well, medically, I see my oncologist on the fourth of October, I get set up with Hormone Replacement Therapy, ride the wave of those side effects, heal, and have my implant switcheroo surgery in December or January (oh, and fight the insurance company while I'm at it). And, mentally, I continue to surround myself with great people and keep the love and support close to my heart.
I would love to write a book, the same book that I was looking for when I was diagnosed; a book about cancer in your 20s, although no harder than cancer in your 50s, it's different. When I was first diagnosed, any literature devoted to breast cancer seemed to be geared towards women in their 50s or at the earliest 40s. I want to write about losing a breast in your 20s and when it's so much a part of your sexuality, fertility options and how we made our decision, about not having the option to breast feed if I am ever given the opportunity, about positivity and hope, about support and encouragement and how even the small things make a world of difference in the life of someone dealing with cancer. I have some pretty amazing friends who have done some pretty amazing things and I would love to pass on some stories and maybe be the positive person in someone else's life.
I have listed some of the incredible things that have been done for me in the past 6 months between Team Katie at the Relay for Life, the benefit that was thrown for me, and the family reunion where everyone wore pink in my honour, but one friend in particular has taught me so much about friendship and selflessness. I hadn't spoken to her in years but she was sure to have flowers waiting in my hospital room after surgery. She sent me cards, and constantly sent me words of encouragement along the way. She baked me cookies, and visited me while I was recovering. She has been that person who exemplifies 'that one person' who stands by you when you need it the most. One of her most recent 'acts' was an "Encouragement Jar" that has over 30 pieces of coloured paper folded up inside of it. Each piece has something written on it that has made me smile or cry, and has encouraged me along the way. One of the most recent ones said "Remember when we drove to Quebec and sang Little Mermaid songs the whole way? 'I wanna be where the people are...'" That made me smile, no, that made me laugh out loud. Others had inspirational quotes on them, while others are still unread as I know I will need encouragement along the way (even though it is so tempting to read them all at once). I want to pass some of her kindness onto others.
I would LOVE to be a motivational speaker. I don't know how you exactly apply for that job. Who do I send a resume to? Oh hi, my name is Katie, I've had cancer and was really positive during the whole process, would you like to fund a 'tour' across Canada so that I can talk to people/students/women about (life, cancer, education, motivation, encouragement, positivity, etc.)? None the less, I would love to do that...
So what is my new normal? I have no idea. I might be able to answer that in a couple of years. This next year is going to be a whole lot of firsts; first October without a breast, first Christmas post-cancer, first anniversary after my diagnosis, etc. and along with those firsts will come more lessons and more learning. As much as I would like to go back to my 'old normal', I'm kind of looking forward to my new one.
Thursday, September 8, 2011
Chemo Graduation Day
Tomorrow is the big day; chemo graduation day. I am less than 24 hours away from finishing chemo and I'm am a bundle of emotions. I am obviously excited because it is over. I will be really excited when my Neulasta shot is over too, that means no more needles in the stomach, yahoo!!!
I am nervous. For the past 6 months (it will be exactly 6 months on the 11th) all I've wanted is to spend less time in the hospital, not be under the constant care of doctors, to finish chemo, be free of monitoring and yet, it is that freedom that concerns me. At least for right now, if something isn't right, my continual blood test and constant monitoring will show it. I just wasn't expecting there to be this anxiety accompanying my last chemo treatment. I think I am starting to realize that cancer is a life long journey, no matter how long you've been cancer-free. I kind of feel like it's comparable to an alcoholic; regardless of if it's been 30 years since their last drink, they still consider themselves an alcoholic. I will just deal with the future as it comes, try not to over analyze EVERYTHING, and continue to accept support that everyone has so graciously given.
I also found out about Tamoxifen on Tuesday. About 5 weeks after my last treatment, I have to go back in and see my oncologist. I am given Tamoxifen for the next five years (one pill, daily). Cancer cells attract estrogen and Tamoxifen tricks cancer cells into thinking that Tamoxifen is actually estrogen. So the cancer cell can't develop and estrogen can't come in contact with the cancer cell either, because Tamoxifen is blocking any access. Although this is necessary, we won't be able to try to have children for at least five years, Tamoxifen can also negatively effect my baby maker, and side effects include further hot flashes, MORE WEIGHT GAIN, an increased chance of endometrial cancer (if my uterus lining builds up and doesn't shed its lining because of hormonal changes) and the potential of going through menopause at 27 years old. Mind you, there's no point in having a baby if I a) have cancer or b) am not healthy enough to take care of a baby.
Tomorrow also rounds off the 4th day in a row that I have been at the hospital (doctor's appointments, blood tests, and chemo). Today, I was at the Children's Hospital of Eastern Ontario (CHEO) for a consultation for genetics testing. I am being tested for the breast cancer gene. I got approved for testing because I had breast cancer under the age of 35. If the test comes back (in 4 months) that I do have the brca1 (breast cancer 1) or brca2 (breast cancer 2) gene, I have an increased chance of having ovarian cancer or it showing up in my left breast. I might have the choice to have my left breast removed and eventually (hopefully after I have 2 very healthy children) have a hysterectomy. What I found out today was, if I do have brca1 or brca2, there is a 50% chance of passing it on to my children. Girls' odds are different than boys', but if my daughter does inherit the gene from me, she has an 85% percent chance of developing breast cancer. Now, I'm way ahead of myself here, but isn't that something to think about? What would I do if my daughter had breast cancer at 26 and I knew there was not only a possibility of it happening but a likelihood of her getting it? On the other hand, look at how far they have come in the last 26 years with diagnostic tools, prevention, and treatment plans so who's to say what they will be able to do in another 2 and a half decades.
As I walked through the hospital today (I went alone as Keith had to work and my mom won't be here until tonight [she's coming for my graduation]), I saw many sick children but one in particular stood out. There was a little girl no older than my niece (4 years old) who had a head covering on and I could see that she had lost her hair. I'm assuming that she is currently in chemo. She was just sitting waiting with her dad, she wasn't crying, she wasn't complaining, she was just waiting. I wanted to go over and hug her because it has been challenging for me to go through cancer and chemo at 26, how has she done it at 4 or 5 years old? You want to talk about inspiration, look at this little girl; I got nothing on her. I actually had to pull myself together before I went into my appointment because I was a little overwhelmed. I wasn't sad, I was inspired. I have found it so easy to get so caught up with cancer and its effects like the potential of not having babies, going through chemo, being declined LTD coverage, etc. etc. etc. and here she is dealing with similar issues at 4 years old; an age when you should be worried about your very first day of school, and Justin Bieber, and playing dress up, not cancer, and chemo, and hospitals.
Seeing her and the other children in the waiting room brought me back to taking the tour of my cancer centre a week before chemo started and I remember being surprised by how many patients were there getting treatment, how many people have cancer; well, I had the same reaction today only tenfold. When you think about having a baby, the last thing you think about is spending their first 4 years of their life in a hospital, probably the same way my mom didn't think her daughter would have cancer in her twenties.
Having cancer in my twenties has however opened some doors that may have otherwise been closed. On Wednesday morning, I shot a commercial for the Canadian Breast Cancer Foundation. The target audience is ages 14-24 and because I was 26 when I was diagnosed, we are hoping that I appeal to them more than someone who is their mothers' age. The commercial will be on the CBCF website (cbcf.org) and on youtube and also at movie theaters starting in Saskatchewan. I will post a link once the final product is finished. It was such a great experience; the videographer and the studio owner were incredibly friendly and welcoming (they both donated their time and space for the cause). And I love feeling like I am making a difference. I know that this is what I was meant to do in life. I also have something else in the works that I will blog about soon. Now all I need to do is get a job using my schooling in education and applying it to cancer awareness and prevention in young women.
Finally, I want to say, to all the men and women who are just about to start your chemo treatments, be strong. I know what it's like looking at the future and knowing that it's filled of disappointment, compromise, challenges, puking, diarrhea, losing your hair, hospitals, needles, weight gain/loss, a sense of loss of control, and the unknown, but keep it mind that it's the support of others, the inner strength that you find when you don't think you have anything left inside of you, the determination that you will find when you decide that cancer is not going to make you a victim but instead of fighter, and the undying need to make cancer history that will get you through. I cannot believe that after tomorrow I will have finished chemo. It is not something I wanted to go through but I can't believe I did it. I'm not going to lie to you, I'm kind of proud of myself. I think about the scared girl who started treatment in May and I am so much stronger now, I am a different person, and as far as I'm concerned, as of tomorrow, I am cancer-free.
For those of you who don't know, on the last day of your chemo, you get to ring a bell that represents the end of treatment and the whole cancer centre claps and cheers you on. That's why my mom is coming up, to witness her baby graduate. I have been lucky enough to congratulate others on their last days, and cheer while others finish their treatment and all I can say is, 'what a feeling'. This blog entry has probably been the most emotional to write and I can imagine how emotional tomorrow will be. It is quite a milestone, again, a milestone I wish I didn't have to experience but none the less, a milestone that I've accomplished.
It is the end of one journey and the start of another. Although I will continue to need support from those around me, thank you for all the support that I have been given so far. I wouldn't be here without it.
I am nervous. For the past 6 months (it will be exactly 6 months on the 11th) all I've wanted is to spend less time in the hospital, not be under the constant care of doctors, to finish chemo, be free of monitoring and yet, it is that freedom that concerns me. At least for right now, if something isn't right, my continual blood test and constant monitoring will show it. I just wasn't expecting there to be this anxiety accompanying my last chemo treatment. I think I am starting to realize that cancer is a life long journey, no matter how long you've been cancer-free. I kind of feel like it's comparable to an alcoholic; regardless of if it's been 30 years since their last drink, they still consider themselves an alcoholic. I will just deal with the future as it comes, try not to over analyze EVERYTHING, and continue to accept support that everyone has so graciously given.
I also found out about Tamoxifen on Tuesday. About 5 weeks after my last treatment, I have to go back in and see my oncologist. I am given Tamoxifen for the next five years (one pill, daily). Cancer cells attract estrogen and Tamoxifen tricks cancer cells into thinking that Tamoxifen is actually estrogen. So the cancer cell can't develop and estrogen can't come in contact with the cancer cell either, because Tamoxifen is blocking any access. Although this is necessary, we won't be able to try to have children for at least five years, Tamoxifen can also negatively effect my baby maker, and side effects include further hot flashes, MORE WEIGHT GAIN, an increased chance of endometrial cancer (if my uterus lining builds up and doesn't shed its lining because of hormonal changes) and the potential of going through menopause at 27 years old. Mind you, there's no point in having a baby if I a) have cancer or b) am not healthy enough to take care of a baby.
Tomorrow also rounds off the 4th day in a row that I have been at the hospital (doctor's appointments, blood tests, and chemo). Today, I was at the Children's Hospital of Eastern Ontario (CHEO) for a consultation for genetics testing. I am being tested for the breast cancer gene. I got approved for testing because I had breast cancer under the age of 35. If the test comes back (in 4 months) that I do have the brca1 (breast cancer 1) or brca2 (breast cancer 2) gene, I have an increased chance of having ovarian cancer or it showing up in my left breast. I might have the choice to have my left breast removed and eventually (hopefully after I have 2 very healthy children) have a hysterectomy. What I found out today was, if I do have brca1 or brca2, there is a 50% chance of passing it on to my children. Girls' odds are different than boys', but if my daughter does inherit the gene from me, she has an 85% percent chance of developing breast cancer. Now, I'm way ahead of myself here, but isn't that something to think about? What would I do if my daughter had breast cancer at 26 and I knew there was not only a possibility of it happening but a likelihood of her getting it? On the other hand, look at how far they have come in the last 26 years with diagnostic tools, prevention, and treatment plans so who's to say what they will be able to do in another 2 and a half decades.
As I walked through the hospital today (I went alone as Keith had to work and my mom won't be here until tonight [she's coming for my graduation]), I saw many sick children but one in particular stood out. There was a little girl no older than my niece (4 years old) who had a head covering on and I could see that she had lost her hair. I'm assuming that she is currently in chemo. She was just sitting waiting with her dad, she wasn't crying, she wasn't complaining, she was just waiting. I wanted to go over and hug her because it has been challenging for me to go through cancer and chemo at 26, how has she done it at 4 or 5 years old? You want to talk about inspiration, look at this little girl; I got nothing on her. I actually had to pull myself together before I went into my appointment because I was a little overwhelmed. I wasn't sad, I was inspired. I have found it so easy to get so caught up with cancer and its effects like the potential of not having babies, going through chemo, being declined LTD coverage, etc. etc. etc. and here she is dealing with similar issues at 4 years old; an age when you should be worried about your very first day of school, and Justin Bieber, and playing dress up, not cancer, and chemo, and hospitals.
Seeing her and the other children in the waiting room brought me back to taking the tour of my cancer centre a week before chemo started and I remember being surprised by how many patients were there getting treatment, how many people have cancer; well, I had the same reaction today only tenfold. When you think about having a baby, the last thing you think about is spending their first 4 years of their life in a hospital, probably the same way my mom didn't think her daughter would have cancer in her twenties.
Having cancer in my twenties has however opened some doors that may have otherwise been closed. On Wednesday morning, I shot a commercial for the Canadian Breast Cancer Foundation. The target audience is ages 14-24 and because I was 26 when I was diagnosed, we are hoping that I appeal to them more than someone who is their mothers' age. The commercial will be on the CBCF website (cbcf.org) and on youtube and also at movie theaters starting in Saskatchewan. I will post a link once the final product is finished. It was such a great experience; the videographer and the studio owner were incredibly friendly and welcoming (they both donated their time and space for the cause). And I love feeling like I am making a difference. I know that this is what I was meant to do in life. I also have something else in the works that I will blog about soon. Now all I need to do is get a job using my schooling in education and applying it to cancer awareness and prevention in young women.
Finally, I want to say, to all the men and women who are just about to start your chemo treatments, be strong. I know what it's like looking at the future and knowing that it's filled of disappointment, compromise, challenges, puking, diarrhea, losing your hair, hospitals, needles, weight gain/loss, a sense of loss of control, and the unknown, but keep it mind that it's the support of others, the inner strength that you find when you don't think you have anything left inside of you, the determination that you will find when you decide that cancer is not going to make you a victim but instead of fighter, and the undying need to make cancer history that will get you through. I cannot believe that after tomorrow I will have finished chemo. It is not something I wanted to go through but I can't believe I did it. I'm not going to lie to you, I'm kind of proud of myself. I think about the scared girl who started treatment in May and I am so much stronger now, I am a different person, and as far as I'm concerned, as of tomorrow, I am cancer-free.
For those of you who don't know, on the last day of your chemo, you get to ring a bell that represents the end of treatment and the whole cancer centre claps and cheers you on. That's why my mom is coming up, to witness her baby graduate. I have been lucky enough to congratulate others on their last days, and cheer while others finish their treatment and all I can say is, 'what a feeling'. This blog entry has probably been the most emotional to write and I can imagine how emotional tomorrow will be. It is quite a milestone, again, a milestone I wish I didn't have to experience but none the less, a milestone that I've accomplished.
It is the end of one journey and the start of another. Although I will continue to need support from those around me, thank you for all the support that I have been given so far. I wouldn't be here without it.
Friday, September 2, 2011
Are You Covered?
Every website, piece of literature, or document devoted to cancer and cancer research that I can find says the key to beating cancer is early detection. In my case, financially, early detection is what hurt me. If I would have waited a little longer to go to the doctor, and let the cancer spread a little more, apparently, I would have been covered.
There are four positions at my place of employment that are covered for Long Term Disability (LTD) and I am lucky enough to have one of those positions. You must have been in the position for one year before you are eligible for coverage. The coverage is for 50% of your wage so you're certainly not making money while on LTD but after sickness benefits runs out, LTD kind of picks up where you left off.
I considered myself very lucky to be able to go through a mastectomy and chemo and not have to work through it. I know many people do it (I'm not sure how) but it was very comforting to know that I wouldn't have to work and worry about throwing up at my desk, risking infection due to my immune system that has had the crap kicked out of it or falling asleep in my chair because of chemo.
I had been in my position for a year as of December 2010 and so when my diagnosis was March 11th, 2011, I knew that I was not only eligible but also qualified for LTD.
So, just to be clear, here are some dates;
Sept 2010 - family doctor found a lump
-assumed it was Fibroadenoma (my mom had it at about my age so it was a safe bet)
-ordered an ultrasound
October 2010 - had ultrasound done
- the film was blurry so a 2nd ultrasound was ordered
November 2010 - had ultrasound done
- showed mass (the same mass I could have shown you if I took off my bra)
- radiologist said "I'm 99% sure it's nothing but come back in 3 months so we can monitor it."
- 'Cancer' was never mentioned / nothing on the film indicated cancer
January 2011
- Saw a doctor for a consultation (it's procedure for anyone who has found a lump)
- (verbatim) She said 'Don't worry, you don't have cancer.'
- She said it was again, most likely fibroadenoma
February 2011 - Had the 3-month check-up ultrasound
- I also had a mammogram done
- At this point, they wanted to confirm that it was nothing so a biopsy was ordered
March 1 2011 - Biopsy was done
March 11 2011 - Diagnosis of Breast Cancer
March 19 2011
- Confronted the surgeon who said I didn't have cancer by saying I was given false hope and we need to be on the same page from here on in
- Told her that I wanted to trust her as she was the one doing the surgery and I would have resented her if I didn't confront her for saying I didn't have cancer
- She agreed, appreciated that I brought it up, and we moved on
So, I filled out all of the information for the insurance company which my oncologist charged $35 to fill out. I sent the forms away at the start of July to ensure that there wouldn't be any delay in payment. My sickness benefits ran out on July 23rd and so two weeks later my LTD was supposed to kick in.
I got a call mid-July from the insurance company asking a few questions about my diagnosis. I filled in all the blanks for the rep on the phone. After not too long, she explained that they were going to try to prove that it was a pre-existing condition and deny the claim.
WHAT? But I was diagnosed in March and I qualified in December?
She also asked if the side effects of my chemo were difficult to deal with and wondered if I had a good support system. What difference does that make? Does it help her to sleep at night if she knows that I have a good support system? I never found out what basis those questions had.
She also wanted to know my highest level of education because I not only had to prove that I am not capable to complete the job that I had when I left, but I have to prove that I can't do any job. Well, the last time I checked, there isn't a job out there that prefers you to both puke and poop your pants at the same time while trying work.
Anyway, after not hearing anything for a month, I called on last Wednesday and left a message asking for her to call me back. She called me on Thursday to tell me that I had been declined. So, even though there is no test that showed cancer prior to the biopsy in March (I'll even say the mammogram showed reason for concern in February), you are declining my claim because I had a pre-existing condition prior to my one year being up?
While I had her on the phone, I asked about the appeal process and she said the information would be sent to me along with the write up explaining the reason for it being declined. I also asked her for the legal department's contact information because if someone knew that I had cancer in September and withheld that information from me, and I am still going through chemo a year later then someone needs to be held accountable. The woman from the insurance company said that no one in particular said that I had cancer in September but because diagnostic tests were used, they are arguing that I had a pre-existing condition. Well, you can't have it both ways, you can't say that no one is willing to say that I had cancer prior to my diagnosis but you're declining my claim because I had a pre-existing condition called cancer.
She is saying because there was a lump that means that I had cancer. Why then did my surgeon say 'Don't worry you don't have cancer', and why then do women, who have biopsies on lumps that are benign, continue to be monitored? Because, benign lumps can turn into cancer. There is no proof that the lump was malignant in September. I had a pre-existing lump, I did not have a pre-existing condition. In September, they weren't looking for cancer (which they didn't find), they were looking for anything. I was given pamphlets on Fibroadenoma in January because that's what I was told I had.
I've had to go back through my journal to look up some dates for this entry. Keith was good enough to get me a journal in the very beginning so I could document my 'journey'. I found some entries where I commented on how lucky I was to have LTD and that I wouldn't have to go back to work too early and risk burning myself out or risk infection because my immune system just wasn't ready for me to be working again and yet look at the situation I'm in.
I still have another surgery ahead of me; it's for my implant, so I can have a right breast again. I know insurance companies don't care about things like that. They look at the bottom line, they look at loop holes and saving money, regardless of who suffers. What's frustrating is that insurance companies give an illusion of caring and taking care of their clients, they are supposed to be about families, and supposed to protect you when you need it.
The sad thing is, at most, I would get no more than $12000 over 5 or 6 months. It's not like this was for millions, and it will still be challenging to pay rent, and OSAP and groceries and bills; it was enough to keep us afloat. It was enough to keep me from going back to work too early. It was enough for us to not go into debt at 27 years old on top of having cancer.
Chemo graduation day is next Friday. I made it, as hard as that is to believe, I did it! All six treatments will be behind me as of Friday afternoon and then it will be time to heal. Unfortunately, I fear that I will have to return to work early because financially, we cannot afford to have one income for much longer.
I am waiting to find out about the appeal process (which I'm sure will take months) and will be somewhat costly and then I will take the next step. As my Dad said, "you only have so much fight in you, and you should be focusing on your fight with cancer not with insurance companies." Insurance companies get away with so much, and it always seems to be the honest guy who pays. I also want to be clear that it's not my place of employment who's to blame either, they have been great! They may want to reconsider their insurance company when the renewal for the contract comes up, but they have been great with me having time off and supporting me through this whole thing.
Before you pay another penny into your insurance, I'd make sure that you are covered for what you think you covered for.
There are four positions at my place of employment that are covered for Long Term Disability (LTD) and I am lucky enough to have one of those positions. You must have been in the position for one year before you are eligible for coverage. The coverage is for 50% of your wage so you're certainly not making money while on LTD but after sickness benefits runs out, LTD kind of picks up where you left off.
I considered myself very lucky to be able to go through a mastectomy and chemo and not have to work through it. I know many people do it (I'm not sure how) but it was very comforting to know that I wouldn't have to work and worry about throwing up at my desk, risking infection due to my immune system that has had the crap kicked out of it or falling asleep in my chair because of chemo.
I had been in my position for a year as of December 2010 and so when my diagnosis was March 11th, 2011, I knew that I was not only eligible but also qualified for LTD.
So, just to be clear, here are some dates;
Sept 2010 - family doctor found a lump
-assumed it was Fibroadenoma (my mom had it at about my age so it was a safe bet)
-ordered an ultrasound
October 2010 - had ultrasound done
- the film was blurry so a 2nd ultrasound was ordered
November 2010 - had ultrasound done
- showed mass (the same mass I could have shown you if I took off my bra)
- radiologist said "I'm 99% sure it's nothing but come back in 3 months so we can monitor it."
- 'Cancer' was never mentioned / nothing on the film indicated cancer
January 2011
- Saw a doctor for a consultation (it's procedure for anyone who has found a lump)
- (verbatim) She said 'Don't worry, you don't have cancer.'
- She said it was again, most likely fibroadenoma
February 2011 - Had the 3-month check-up ultrasound
- I also had a mammogram done
- At this point, they wanted to confirm that it was nothing so a biopsy was ordered
March 1 2011 - Biopsy was done
March 11 2011 - Diagnosis of Breast Cancer
March 19 2011
- Confronted the surgeon who said I didn't have cancer by saying I was given false hope and we need to be on the same page from here on in
- Told her that I wanted to trust her as she was the one doing the surgery and I would have resented her if I didn't confront her for saying I didn't have cancer
- She agreed, appreciated that I brought it up, and we moved on
So, I filled out all of the information for the insurance company which my oncologist charged $35 to fill out. I sent the forms away at the start of July to ensure that there wouldn't be any delay in payment. My sickness benefits ran out on July 23rd and so two weeks later my LTD was supposed to kick in.
I got a call mid-July from the insurance company asking a few questions about my diagnosis. I filled in all the blanks for the rep on the phone. After not too long, she explained that they were going to try to prove that it was a pre-existing condition and deny the claim.
WHAT? But I was diagnosed in March and I qualified in December?
She also asked if the side effects of my chemo were difficult to deal with and wondered if I had a good support system. What difference does that make? Does it help her to sleep at night if she knows that I have a good support system? I never found out what basis those questions had.
She also wanted to know my highest level of education because I not only had to prove that I am not capable to complete the job that I had when I left, but I have to prove that I can't do any job. Well, the last time I checked, there isn't a job out there that prefers you to both puke and poop your pants at the same time while trying work.
Anyway, after not hearing anything for a month, I called on last Wednesday and left a message asking for her to call me back. She called me on Thursday to tell me that I had been declined. So, even though there is no test that showed cancer prior to the biopsy in March (I'll even say the mammogram showed reason for concern in February), you are declining my claim because I had a pre-existing condition prior to my one year being up?
While I had her on the phone, I asked about the appeal process and she said the information would be sent to me along with the write up explaining the reason for it being declined. I also asked her for the legal department's contact information because if someone knew that I had cancer in September and withheld that information from me, and I am still going through chemo a year later then someone needs to be held accountable. The woman from the insurance company said that no one in particular said that I had cancer in September but because diagnostic tests were used, they are arguing that I had a pre-existing condition. Well, you can't have it both ways, you can't say that no one is willing to say that I had cancer prior to my diagnosis but you're declining my claim because I had a pre-existing condition called cancer.
She is saying because there was a lump that means that I had cancer. Why then did my surgeon say 'Don't worry you don't have cancer', and why then do women, who have biopsies on lumps that are benign, continue to be monitored? Because, benign lumps can turn into cancer. There is no proof that the lump was malignant in September. I had a pre-existing lump, I did not have a pre-existing condition. In September, they weren't looking for cancer (which they didn't find), they were looking for anything. I was given pamphlets on Fibroadenoma in January because that's what I was told I had.
I've had to go back through my journal to look up some dates for this entry. Keith was good enough to get me a journal in the very beginning so I could document my 'journey'. I found some entries where I commented on how lucky I was to have LTD and that I wouldn't have to go back to work too early and risk burning myself out or risk infection because my immune system just wasn't ready for me to be working again and yet look at the situation I'm in.
I still have another surgery ahead of me; it's for my implant, so I can have a right breast again. I know insurance companies don't care about things like that. They look at the bottom line, they look at loop holes and saving money, regardless of who suffers. What's frustrating is that insurance companies give an illusion of caring and taking care of their clients, they are supposed to be about families, and supposed to protect you when you need it.
The sad thing is, at most, I would get no more than $12000 over 5 or 6 months. It's not like this was for millions, and it will still be challenging to pay rent, and OSAP and groceries and bills; it was enough to keep us afloat. It was enough to keep me from going back to work too early. It was enough for us to not go into debt at 27 years old on top of having cancer.
Chemo graduation day is next Friday. I made it, as hard as that is to believe, I did it! All six treatments will be behind me as of Friday afternoon and then it will be time to heal. Unfortunately, I fear that I will have to return to work early because financially, we cannot afford to have one income for much longer.
I am waiting to find out about the appeal process (which I'm sure will take months) and will be somewhat costly and then I will take the next step. As my Dad said, "you only have so much fight in you, and you should be focusing on your fight with cancer not with insurance companies." Insurance companies get away with so much, and it always seems to be the honest guy who pays. I also want to be clear that it's not my place of employment who's to blame either, they have been great! They may want to reconsider their insurance company when the renewal for the contract comes up, but they have been great with me having time off and supporting me through this whole thing.
Before you pay another penny into your insurance, I'd make sure that you are covered for what you think you covered for.
Thursday, August 25, 2011
Resources for Cancer Patients
I spent hundreds of hours looking for resources that had valuable and reliable information. There is a lot of opinion 'out there' so make sure, especially when reading information online, that the information is from a reputable source. I found the following resources to be helpful especially when I was trying to understand this disease and my options, but remember don't make any decisions without consulting a doctor or your cancer team. I was looking for a list like this when I was first diagnosed and I couldn't find one so why not try to make one with resources that I've used?
facingcancer.ca - If you are reading this blog, you have obviously discovered this website however, this website is different than any other website I have discovered because it focuses on the individual. It recognizes that each person's diagnosis is different but that we all share similar experiences and difficulties. This is the only site that I have found that talks openly about issues like vaginal dryness, sex after cancer (or in my case, during chemo), and at the same time has threads on the forum like Music Monday and eating properly, etc. This website focuses on the person not only the cancer and I think that's one of the hardest types of resources to find. It allows people to discuss openly and honestly about however cancer has affected them.
rethinkbreastcancer.com
This is an essential website for young women facing breast cancer. It wasn't until I found this website that I realized that not only was I not alone, but that there are so many other young women like me facing breast cancer. This is from their website, 'Launched in 2001, Rethink is the first-ever, Canadian breast cancer charity to bring bold, relevant awareness to the under-40 crowd; foster a new generation of young and influential breast cancer supporters; infuse sass and style into the cause; and, most importantly, respond to the unique needs of young (or youngish) women going through it.' Love it!
http://youngsurvival.org/breast-cancer-in-young-women/overview/ (American)
http://youngadultcancer.ca/community/ (Canadian)
These are websites that support young people dealing with cancer. This was challenging to find; I could find a lot of information on breast cancer but I couldn't find a lot about young women with breast cancer. Women diagnosed with breast cancer under 40 are not represented in much of the literature or research that I could find. Even the pamphlets, etc. that I can find at the hospital, all have pictures of women over 50. It makes it difficult to relate...
talkabouthealth.com
This is a great forum for anyone facing cancer (either as the patient, caregiver, spouse, etc.). You can ask any cancer related questions and this website is set up to have the most qualified member of the website answer that question. From their website, 'We are a welcoming and caring community that has come together to meet, share, and learn with each other. We welcome patients, families, caregivers, survivors, professionals, and organizations. All members are encouraged to share their unique knowledge and experiences. The more we share, the more people we help.'
http://www.breastcancer.org/
http://www.cbcf.org/breastcancer/ (Canadian Breast Cancer Foundation)
For everything breast cancer. They have a lot of specifics about symptoms, side effects, treatment, day to day issues, etc.
www.cancer.ca
This is the Canadian Cancer Society's website and it answered a lot of questions early on. There is a lot of general information about all different sorts of cancer. This website was useful for some of the things my medical team didn't tell me like, to get a pap-test and a dental check-up prior to starting chemo. Your vaginal cells can change while in chemo and it's good to get a baseline just in case and if they find a cavity in a tooth after chemo starts they can't work on it due to possible infection. These were simple things that I didn't know prior to being diagnosed with cancer.
Your PDN - Your Private Duty Nurse is there for you. After treatment #2, I was pretty sick but I thought that vomiting, not sleeping, and constant nausea for 48 hours was just part of chemo. I waited 2 days before I called my PDN and I should have called after 2 hours at the most. Within 4 hours, I was hooked up to an IV at home to hydrate me as well as give me anti-nausea meds intravenously too. Your medical team is there to help you get through chemo with the least amount of discomfort as possible so use them.
Your Pharmacist- I have called my pharmacist on a number of occasions to ensure that certain medications can be taken with others or to verify that certain meds cause certain side effects. Don't be afraid to call a pharmacist to ask questions about your medication if you feel uncomfortable calling your PDN or oncologist.
www.medicinenet.com
http://www.emedicinehealth.com/script/main/hp.asp
Whenever you have any questions about your prescriptions you should always advise your PDN, pharmacist or doctor. However, I found these websites helpful when I was looking up quick facts about new prescriptions and their side effects, doses, etc., I used it as a verification tool.
http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/
Chemotherapy/Combinationregimen/FEC.aspx
Each cancer is treated with different chemo cocktails. If I'm not mistaken, the patient's cocktail is determined by the type of cancer (so in my case, breast) and then also the make-up of the tumour or cells. I had a cocktail called 'FEC' for treatments 1-3 and 'Taxotere' for treatment 4-6. I found that this website answered some questions about each of these treatments. So much of my fear prior to starting chemo was the unknown and this website was able to answer some of those 'unknowns'. I found that when my oncologist asked if I had any questions, my mind would be overwhelmed with new information so I didn't have any questions at the time and then once I got home, I couldn't get enough information about it. A lot of the different chemo treatments are listed on the left side of this website's page so if you aren't getting FEC or Taxotere, it doesn't mean that your treatment isn't on this website.
http://profiles.drugcoverage.ca/en/default.asp?DrugID=68
I need an injection once every treatment that costs $3000 each. Keith's plan covers 80% but that leaves $600 out-of-pocket. The Victory Program covered the outstanding cost of $600 so the $3000 injection that was going to put us into debt ended up costing us $28 each. It's an incredible program. Ask your oncologist about this program if you require this injection (there are a few different injections that this program covers but mine is called Neulasta). It's used to increase your white blood cell count during the days when you are highly susceptible to infection. Direct phone number is 1-888-706-4717.
* Don't be afraid to call your insurance company too. They cover things like wigs, mastectomy bras, and other 'stuff' you may not expect. A phone call never hurts.
PICC/Port/IV- Be aware of your options. From what I know, most chemotherapy is administered intravenously and depending on the the number of treatments you need, along with the limited access to veins that one has, one of the three options are chosen. In my case, I am petrified of needles so although the insertion of a PICC line caused many sleepless nights and too many tears, I chose it because it didn't add the anxiety to every chemo treatment, instead it was all over with one procedure (and I would do it again). Also, because I had lymph nodes removed from my right arm so, I will never be able to have an IV put in my right arm ever again (that is the 'limited access' I was referring to above). The PICC line is inserted into your arm using an ultrasound machine and guided up your arm through a vein into a larger vein that leads to your heart. My PICC line is 53cms long. It's not pleasant to think about but I can't feel it. A PICC also requires a lot of care; homecare comes to my house twice a week to change dressings and sanitize the area on my arm. For the record, there is no where that says you can't get an IV every time you get chemo, it just wasn't the right option for me.
I don't know a lot about the port but from my understanding, you get the port (it's inserted under your skin in your chest and is a minor surgery) when you are going to be in chemo long term. For example, during my first treatment, I met a woman who had been there every three weeks for a year and a half and she had a port. I think when you are HER2 positive they recommend a port rather than a PICC.
http://www.breastcancer.org/tips/fert_preg_adopt/fertility/chemotherapy.jsp
http://www.chemocare.com/managing/fertility.asp Keith and I had lots of questions about chemo's effects on fertility and I found the following sites helped answer some of these questions. We were lucky enough to get referred to a fertility doctor prior to the start of chemo and although we learned about some options, if you are of reproductive age, be aware that there are many unknowns when it comes to chemo's effects on fertility so ask questions. For example, In Vitro was an option but because it requires hormone injections to over stimulate your ovaries in order to extract eggs and my cancer is hormone based, there wasn't enough research (to satisfy or convince us) that it would have no affect on recurrence. We didn't feel like there was definitive proof that it had absolutely no chance of increasing my odds of recurrence. There's no point in planning for a baby if I'm not here to have it. That's not to say that there aren't studies on women with breast cancer who have chosed IVF but there wasn't enough research for Keith and I to agree to go ahead with it. Our thought process was, at least we know the outcome (although it could mean that we can't have children) if we don't pump me full of hormones but there are so many variables and uncertainties with hormones and cancer if we were to use hormones.
Mastectomy Shop - I went to a local, independent store where the owner was incredible. She was very knowledgeable and helpful. She helped me pick out the appropriate post-surgery bra. I know it may be a little intimidating to walk into a mastectomy specific store because every one knows why you are going in there (assumingly it's the same feeling as walking into an 'adult only store' - not that I would know) but it's so worth it. I went to 3 or 4 stores prior to feeling comfortable with the stock and the salesperson. So much of cancer is out of our hands and uncomfortable so when you have some say in the matter, make it count by shopping around first. I loved the bra I ended up getting.
Hospital Wig Shops - I was lucky enough to have benefits that covered my $655 wig but many people don't have that option. Some hospitals have used wig shops that sell wigs at a reduced price or supply them free of charge. These wigs have been donated after being lightly used then cleaned and sterilised. I know there is one at the hospital where I get my chemo and the hospital in Toronto where I did the lgfb workshop apparently also has something along the same lines. I can't seem to find a website to post but don't be afraid to ask someone in the hospital or cancer centre.
Support Groups- Support groups are usually specific to some sort of classification like type of cancer, or age, or are for caregivers of the patient, etc. I know there is one at my hospital that is specific to 18-35 year olds who have been diagnosed with cancer. I am hoping that I will be able to join in the fall because by the time I found out about the summer group, it had started three weeks prior. Regardless, I have yet to hear of anyone going to a support group and not feeling like it was worth it. I think there is a sense of comradery, validation, and some what relief that you are not alone. Although, I can't recommend them from experience, I do recommend them based on what others have told me.
A Mentor- My sister-in-law's mother was completing her radiation around the time I was having my surgery. She was diagnosed last year, had surgery, chemo and radiation and I really leaned on her for the 'is this normal" questions and the 'on what day of treatment did this happen" kind of concerns. She really put me at ease and validated my fears and concerns. If anyone out there has any concerns, or questions and you don't have anyone to ask these questions to, please don't hesitate to contact me. I am not at all qualified to be a mentor but sometimes you just want to know on what day someone else's hair fell out or how long thrush lasts while you are taking Taxotere. I am no doctor but I certainly don't mind answering questions about my experiences.
An Extra Set of Ears - I'm not going to lie, I have unintentionally completely quit listening to doctors in the middle of appointments because I get stuck on certain pieces of information or because I get overwhelmed with new side effects or when 'the plan' changes (for example when a lumpectomy turns into a mastectomy in the matter of minutes) so either bring your spouse, mother, daughter, friend, etc. and/or bring a pad of paper and a pen and write down as much as you can (especially if you are planning to repeat this information to family and friends at some point). I have been lucky enough to have my mom, Keith or a friend with me every time and they always pick up on something that I didn't even realize the doctor had said.
Physiotherapy - Your doctor will probably refer you to a physiotherapist but if not ask about going to one, especially if you've had any lymph nodes removed. They will tell you and teach you techniques and exercises that your surgeon may not that will increase your mobility.
http://www.servicecanada.gc.ca/eng/sc/ei/benefits/sickness.shtml - I was able to apply for EI from the comfort of my own home and just had to send away some of the forms via snail mail but it sure did beat waiting in line at an office. I didn't find the process all that difficult either. The website is pretty informative and remember that you can't apply prior to your last day of work.
Health Services- Your doctor is aware of many resources for your well being so don't be afraid to ask. You have access to (although some of these will not be covered by OHIP) psychiatrists, nutritionists, social workers, psychologists, occupational therapists, etc. and if you feel like you could benefit from any of these, don't be afraid to ask your doctor about them. Your recovery is not only physical, it's mental too.
http://www.victoriasquiltscanada.com/
Victoria Ann Morrison was a wife, mother, grandmother, and the best friend of Deborah Rogers, the founder of Victoria's Quilts in the U.S. She was also a cancer patient. One of the comments she made about her chemotherapy was that she got cold while she was laying in the treatment facility waiting for the day's infusion to be over. Deborah remembered Victoria’s comment about being cold and wanted to do something. Since Victoria made so many quilts in her life time, Deb thought that this would be a good place to start. You can request a quilt for someone who has been diagnosed with cancer and within a few weeks, the quilt will be delivered to the patient's home. My mom got one for me and it is beautiful. This is an incredible organization that is completely free of charge. It is currently in Canada and the U.S..
www.lgfb.ca -Look Good Feel Better - A 2 hour workshop that is supportive, informative, and full of easy and inspiring strategies for managing the appearance-related effects of cancer and its treatment. Participants feel empowered and ready to reclaim their sense of self and well-being. They also learn that they are not alone on their cancer journey. As I have said, it was the first time I had eyebrows in months thanks to the easy-to-follow tips on how to draw them on. My brother could have sworn that I grew them overnight, that's how natural they looked.
http://cottagedreams.org/
Cottage Dreams Cancer Recovery Initiative is a registered charity that offers recent cancer survivors the opportunity to spend a week at a private, donated cottage to reconnect and rejuvenate with family and friends after successfully completing treatment. Cool, eh?
http://www.harpercollins.ca/books/Am-Not-My-Breast-Cancer-Ruth-Peltason/?isbn=9780061174070
I have found that this book really validates a lot of feelings that I have had thus far on my 'journey'. It is called "I Am Not My Breast Cancer" and it's a compilation of women's views, expressions, feelings, approaches, etc, to breast cancer. I have quoted it a few times in prior blog entries and I just can't recommend it enough. When I was first diagnosed, I bought a number of books but this one was that one book that I couldn't read a page without stopping and reading part of it to Keith.
Keep in mind, your cancer centre probably has a library full of books that can be used as a resource as well as your public library that way you don't have to go and buy them.
I found these websites very helpful but I don't advise you to make any decisions without consulting a healthcare professional based on the information found in these resources. They should be used as a guide but they should not be your only source for decision making. This entry was meant to be used as a database and as a way to educate yourself with what's out there. I found these websites to be applicable to me and I had to weed through a lot that wasn't. Hopefully this will save you a little time in an extremely time consuming venture known as the world wide web of cancer information.
facingcancer.ca - If you are reading this blog, you have obviously discovered this website however, this website is different than any other website I have discovered because it focuses on the individual. It recognizes that each person's diagnosis is different but that we all share similar experiences and difficulties. This is the only site that I have found that talks openly about issues like vaginal dryness, sex after cancer (or in my case, during chemo), and at the same time has threads on the forum like Music Monday and eating properly, etc. This website focuses on the person not only the cancer and I think that's one of the hardest types of resources to find. It allows people to discuss openly and honestly about however cancer has affected them.
rethinkbreastcancer.com
This is an essential website for young women facing breast cancer. It wasn't until I found this website that I realized that not only was I not alone, but that there are so many other young women like me facing breast cancer. This is from their website, 'Launched in 2001, Rethink is the first-ever, Canadian breast cancer charity to bring bold, relevant awareness to the under-40 crowd; foster a new generation of young and influential breast cancer supporters; infuse sass and style into the cause; and, most importantly, respond to the unique needs of young (or youngish) women going through it.' Love it!
http://youngsurvival.org/breast-cancer-in-young-women/overview/ (American)
http://youngadultcancer.ca/community/ (Canadian)
These are websites that support young people dealing with cancer. This was challenging to find; I could find a lot of information on breast cancer but I couldn't find a lot about young women with breast cancer. Women diagnosed with breast cancer under 40 are not represented in much of the literature or research that I could find. Even the pamphlets, etc. that I can find at the hospital, all have pictures of women over 50. It makes it difficult to relate...
talkabouthealth.com
This is a great forum for anyone facing cancer (either as the patient, caregiver, spouse, etc.). You can ask any cancer related questions and this website is set up to have the most qualified member of the website answer that question. From their website, 'We are a welcoming and caring community that has come together to meet, share, and learn with each other. We welcome patients, families, caregivers, survivors, professionals, and organizations. All members are encouraged to share their unique knowledge and experiences. The more we share, the more people we help.'
http://www.breastcancer.org/
http://www.cbcf.org/breastcancer/ (Canadian Breast Cancer Foundation)
For everything breast cancer. They have a lot of specifics about symptoms, side effects, treatment, day to day issues, etc.
www.cancer.ca
This is the Canadian Cancer Society's website and it answered a lot of questions early on. There is a lot of general information about all different sorts of cancer. This website was useful for some of the things my medical team didn't tell me like, to get a pap-test and a dental check-up prior to starting chemo. Your vaginal cells can change while in chemo and it's good to get a baseline just in case and if they find a cavity in a tooth after chemo starts they can't work on it due to possible infection. These were simple things that I didn't know prior to being diagnosed with cancer.
Your PDN - Your Private Duty Nurse is there for you. After treatment #2, I was pretty sick but I thought that vomiting, not sleeping, and constant nausea for 48 hours was just part of chemo. I waited 2 days before I called my PDN and I should have called after 2 hours at the most. Within 4 hours, I was hooked up to an IV at home to hydrate me as well as give me anti-nausea meds intravenously too. Your medical team is there to help you get through chemo with the least amount of discomfort as possible so use them.
Your Pharmacist- I have called my pharmacist on a number of occasions to ensure that certain medications can be taken with others or to verify that certain meds cause certain side effects. Don't be afraid to call a pharmacist to ask questions about your medication if you feel uncomfortable calling your PDN or oncologist.
www.medicinenet.com
http://www.emedicinehealth.com/script/main/hp.asp
Whenever you have any questions about your prescriptions you should always advise your PDN, pharmacist or doctor. However, I found these websites helpful when I was looking up quick facts about new prescriptions and their side effects, doses, etc., I used it as a verification tool.
http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/
Chemotherapy/Combinationregimen/FEC.aspx
Each cancer is treated with different chemo cocktails. If I'm not mistaken, the patient's cocktail is determined by the type of cancer (so in my case, breast) and then also the make-up of the tumour or cells. I had a cocktail called 'FEC' for treatments 1-3 and 'Taxotere' for treatment 4-6. I found that this website answered some questions about each of these treatments. So much of my fear prior to starting chemo was the unknown and this website was able to answer some of those 'unknowns'. I found that when my oncologist asked if I had any questions, my mind would be overwhelmed with new information so I didn't have any questions at the time and then once I got home, I couldn't get enough information about it. A lot of the different chemo treatments are listed on the left side of this website's page so if you aren't getting FEC or Taxotere, it doesn't mean that your treatment isn't on this website.
http://profiles.drugcoverage.ca/en/default.asp?DrugID=68
I need an injection once every treatment that costs $3000 each. Keith's plan covers 80% but that leaves $600 out-of-pocket. The Victory Program covered the outstanding cost of $600 so the $3000 injection that was going to put us into debt ended up costing us $28 each. It's an incredible program. Ask your oncologist about this program if you require this injection (there are a few different injections that this program covers but mine is called Neulasta). It's used to increase your white blood cell count during the days when you are highly susceptible to infection. Direct phone number is 1-888-706-4717.
* Don't be afraid to call your insurance company too. They cover things like wigs, mastectomy bras, and other 'stuff' you may not expect. A phone call never hurts.
PICC/Port/IV- Be aware of your options. From what I know, most chemotherapy is administered intravenously and depending on the the number of treatments you need, along with the limited access to veins that one has, one of the three options are chosen. In my case, I am petrified of needles so although the insertion of a PICC line caused many sleepless nights and too many tears, I chose it because it didn't add the anxiety to every chemo treatment, instead it was all over with one procedure (and I would do it again). Also, because I had lymph nodes removed from my right arm so, I will never be able to have an IV put in my right arm ever again (that is the 'limited access' I was referring to above). The PICC line is inserted into your arm using an ultrasound machine and guided up your arm through a vein into a larger vein that leads to your heart. My PICC line is 53cms long. It's not pleasant to think about but I can't feel it. A PICC also requires a lot of care; homecare comes to my house twice a week to change dressings and sanitize the area on my arm. For the record, there is no where that says you can't get an IV every time you get chemo, it just wasn't the right option for me.
I don't know a lot about the port but from my understanding, you get the port (it's inserted under your skin in your chest and is a minor surgery) when you are going to be in chemo long term. For example, during my first treatment, I met a woman who had been there every three weeks for a year and a half and she had a port. I think when you are HER2 positive they recommend a port rather than a PICC.
http://www.breastcancer.org/tips/fert_preg_adopt/fertility/chemotherapy.jsp
http://www.chemocare.com/managing/fertility.asp Keith and I had lots of questions about chemo's effects on fertility and I found the following sites helped answer some of these questions. We were lucky enough to get referred to a fertility doctor prior to the start of chemo and although we learned about some options, if you are of reproductive age, be aware that there are many unknowns when it comes to chemo's effects on fertility so ask questions. For example, In Vitro was an option but because it requires hormone injections to over stimulate your ovaries in order to extract eggs and my cancer is hormone based, there wasn't enough research (to satisfy or convince us) that it would have no affect on recurrence. We didn't feel like there was definitive proof that it had absolutely no chance of increasing my odds of recurrence. There's no point in planning for a baby if I'm not here to have it. That's not to say that there aren't studies on women with breast cancer who have chosed IVF but there wasn't enough research for Keith and I to agree to go ahead with it. Our thought process was, at least we know the outcome (although it could mean that we can't have children) if we don't pump me full of hormones but there are so many variables and uncertainties with hormones and cancer if we were to use hormones.
Mastectomy Shop - I went to a local, independent store where the owner was incredible. She was very knowledgeable and helpful. She helped me pick out the appropriate post-surgery bra. I know it may be a little intimidating to walk into a mastectomy specific store because every one knows why you are going in there (assumingly it's the same feeling as walking into an 'adult only store' - not that I would know) but it's so worth it. I went to 3 or 4 stores prior to feeling comfortable with the stock and the salesperson. So much of cancer is out of our hands and uncomfortable so when you have some say in the matter, make it count by shopping around first. I loved the bra I ended up getting.
Hospital Wig Shops - I was lucky enough to have benefits that covered my $655 wig but many people don't have that option. Some hospitals have used wig shops that sell wigs at a reduced price or supply them free of charge. These wigs have been donated after being lightly used then cleaned and sterilised. I know there is one at the hospital where I get my chemo and the hospital in Toronto where I did the lgfb workshop apparently also has something along the same lines. I can't seem to find a website to post but don't be afraid to ask someone in the hospital or cancer centre.
Support Groups- Support groups are usually specific to some sort of classification like type of cancer, or age, or are for caregivers of the patient, etc. I know there is one at my hospital that is specific to 18-35 year olds who have been diagnosed with cancer. I am hoping that I will be able to join in the fall because by the time I found out about the summer group, it had started three weeks prior. Regardless, I have yet to hear of anyone going to a support group and not feeling like it was worth it. I think there is a sense of comradery, validation, and some what relief that you are not alone. Although, I can't recommend them from experience, I do recommend them based on what others have told me.
A Mentor- My sister-in-law's mother was completing her radiation around the time I was having my surgery. She was diagnosed last year, had surgery, chemo and radiation and I really leaned on her for the 'is this normal" questions and the 'on what day of treatment did this happen" kind of concerns. She really put me at ease and validated my fears and concerns. If anyone out there has any concerns, or questions and you don't have anyone to ask these questions to, please don't hesitate to contact me. I am not at all qualified to be a mentor but sometimes you just want to know on what day someone else's hair fell out or how long thrush lasts while you are taking Taxotere. I am no doctor but I certainly don't mind answering questions about my experiences.
An Extra Set of Ears - I'm not going to lie, I have unintentionally completely quit listening to doctors in the middle of appointments because I get stuck on certain pieces of information or because I get overwhelmed with new side effects or when 'the plan' changes (for example when a lumpectomy turns into a mastectomy in the matter of minutes) so either bring your spouse, mother, daughter, friend, etc. and/or bring a pad of paper and a pen and write down as much as you can (especially if you are planning to repeat this information to family and friends at some point). I have been lucky enough to have my mom, Keith or a friend with me every time and they always pick up on something that I didn't even realize the doctor had said.
Physiotherapy - Your doctor will probably refer you to a physiotherapist but if not ask about going to one, especially if you've had any lymph nodes removed. They will tell you and teach you techniques and exercises that your surgeon may not that will increase your mobility.
http://www.servicecanada.gc.ca/eng/sc/ei/benefits/sickness.shtml - I was able to apply for EI from the comfort of my own home and just had to send away some of the forms via snail mail but it sure did beat waiting in line at an office. I didn't find the process all that difficult either. The website is pretty informative and remember that you can't apply prior to your last day of work.
Health Services- Your doctor is aware of many resources for your well being so don't be afraid to ask. You have access to (although some of these will not be covered by OHIP) psychiatrists, nutritionists, social workers, psychologists, occupational therapists, etc. and if you feel like you could benefit from any of these, don't be afraid to ask your doctor about them. Your recovery is not only physical, it's mental too.
http://www.victoriasquiltscanada.com/
Victoria Ann Morrison was a wife, mother, grandmother, and the best friend of Deborah Rogers, the founder of Victoria's Quilts in the U.S. She was also a cancer patient. One of the comments she made about her chemotherapy was that she got cold while she was laying in the treatment facility waiting for the day's infusion to be over. Deborah remembered Victoria’s comment about being cold and wanted to do something. Since Victoria made so many quilts in her life time, Deb thought that this would be a good place to start. You can request a quilt for someone who has been diagnosed with cancer and within a few weeks, the quilt will be delivered to the patient's home. My mom got one for me and it is beautiful. This is an incredible organization that is completely free of charge. It is currently in Canada and the U.S..
www.lgfb.ca -Look Good Feel Better - A 2 hour workshop that is supportive, informative, and full of easy and inspiring strategies for managing the appearance-related effects of cancer and its treatment. Participants feel empowered and ready to reclaim their sense of self and well-being. They also learn that they are not alone on their cancer journey. As I have said, it was the first time I had eyebrows in months thanks to the easy-to-follow tips on how to draw them on. My brother could have sworn that I grew them overnight, that's how natural they looked.
http://cottagedreams.org/
Cottage Dreams Cancer Recovery Initiative is a registered charity that offers recent cancer survivors the opportunity to spend a week at a private, donated cottage to reconnect and rejuvenate with family and friends after successfully completing treatment. Cool, eh?
http://www.harpercollins.ca/books/Am-Not-My-Breast-Cancer-Ruth-Peltason/?isbn=9780061174070
I have found that this book really validates a lot of feelings that I have had thus far on my 'journey'. It is called "I Am Not My Breast Cancer" and it's a compilation of women's views, expressions, feelings, approaches, etc, to breast cancer. I have quoted it a few times in prior blog entries and I just can't recommend it enough. When I was first diagnosed, I bought a number of books but this one was that one book that I couldn't read a page without stopping and reading part of it to Keith.
Keep in mind, your cancer centre probably has a library full of books that can be used as a resource as well as your public library that way you don't have to go and buy them.
I found these websites very helpful but I don't advise you to make any decisions without consulting a healthcare professional based on the information found in these resources. They should be used as a guide but they should not be your only source for decision making. This entry was meant to be used as a database and as a way to educate yourself with what's out there. I found these websites to be applicable to me and I had to weed through a lot that wasn't. Hopefully this will save you a little time in an extremely time consuming venture known as the world wide web of cancer information.
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