i wish someone warned cancer patients that being a survivor is no easy role to fill. i mean, i know you read about it, but it's not like they actually prepare you for any of this stuff. i'm doing my best learning as i go, but a heads up would have been good. so, for all of you, i have created this list of things i wish i knew...
you will have a high when you're done treatment. that high will last a month or so, and then you'll have a startling awareness that you're living a 'normal' life. it's harder than one may think to adjust to not having a lot of emotional excitement from day to day. perhaps it is the emotional excitement of active treatment, scans and seeing a doctor every other week that distracts us from all the other emotions that we end up processing later. whatever it is, it's an odd feeling to not have that excitement, and it may leave you feeling pretty 'blah' until you adjust.
your hair will not grow back quickly. in fact, it may take a while before you start to see yourself as the person you were before. your hair looks different, you've got scars, tattoos, burns from radiation, weird rashes, maybe a port still, and if you're 'lucky' like me, you've gained some weight. not only has your whole internal self been dramatically changed, but you don't even look like the person you used to be. you'll probably notice it, and it'll probably be hard to handle. accepting you've become a whole new person is a difficult thing to do. just keep reminding yourself that you're a better, stronger and more beautiful person now. you're more you than you've ever been.
it's alright to need help. seriously? yea, i wish i knew that. i've never been good at asking for help, and have always been taught to suck it up and 'make it work'. during treatment it's much easier to ask for help because you're so clearly in the midst of something that everyone knows is really difficult. once you finish treatment, the obvious need for help isn't as, well, obvious. this one i'm really still working on...i need to give myself constant reminders that asking for help doesn't mean i'm needy or that i lack independence. in fact, being able to ask for help when i need it makes me more self sufficient and successful than not asking for help and letting myself spiral into anxiety and stress.
you just dealt with something really significant. i have a tendency to minimize everything...how bad i felt during treatment, how scared i was, how frustrated i get with my body, the amount of stress i'm left with, and how huge it really is to face your own mortality. i've minimized things in order to get myself and others through this...but, really, i haven't done anyone much of a service here. give yourself some serious credit...we all know a cancer diagnosis is one of the most feared things in our world, and you just went through it. once you start to accept how huge it is, you'll be able to normalize your ups and downs...and being able to identify your experience as 'normal' at this point is so therapeutic.
you're not alone. there are 13 million survivors, according to the latest estimates. that's a lot. that means a lot of people have walked in your shoes before you. connect with someone who's 'ahead' of you in their survivorship and let them help guide you through the process. without my 'survivor mentors' i'd be totally lost. just to hear that what i'm experiencing at the moment is normal makes all the difference. and, theres a lot to be said for having those friends who just 'get it'. so, reach out. and if you don't know how to connect with someone, i'll help you.
hopefully this helps someone who's about to enter the crazy world of survivorship. that's not to say that this side of cancer isn't wonderful. it is. it totally is. to be able to look back and realize that i survived a cancer diagnosis, eight months of treatment, and came out in one piece is an amazing accomplishment. and my quality of life is certainly better now...i have a deeper appreciation for every single day, breath, relationship and interaction in my days. but, that doesn't mean that there aren't daily challenges that come along with being a survivor...and that's what i'm hoping to bring more awareness to. i think it's that acceptance of our difficulties as survivors as being a normal part of this journey will help make them a whole lot easier to handle.
and, if it's at all helpful to you, pay it forward and start your own list of things you wish you knew and pass it on to someone who's about to be a survivor, too. one bit of advice at a time, we can make the world a better place for every cancer survivor...and we all know there are many more to come.
June 30, 2010
June 13, 2010
new challenges...the journey continues.
cancer presents many challenges, but, what takes a while to realize is that they can't possibly all be dealt with at the same time. when i was diagnosed, i had an initial shock of emotion which caused me to shut down while i tried to process it all. that was over a weekend (first found out i had cancer on a friday)...starting the following monday, i was thrown into warrior mode - which left no time to process emotions. i was so busy trying to get through all the tests and the daily uncertainty, that it was all i could do to just get through it. then, i was finally diagnosed after two long months, and a week later i started treatment. from that point forward, the physical challenge was at the forefront...and the sole focus was finding enough inner strength and will to keep pushing forward.
now, over three months out of chemo and over a month out of radiation the gravity of it all is finally catching up with me. it has become apparent to me that, in my own way of coping and trying to help others cope, i have minimized my experience quite a bit. i never wanted people to feel sorry for me or be afraid for me (and i still don't), so i kept telling people 'it's not so bad', or 'well, i have a really good prognosis' or 'my oncologist says i'm doing really well'. all of those things are true - sort of. i never felt overwhelmingly awful about the whole experience, and i do have a good prognosis, and i did do very well. but, i was given a diagnosis of a life threatening disease, and told that i had to go through physically brutal treatments for the better part of a year - treatments that will pose a serious threat to my health down the road, but are the only way to get me out of immediate danger. that's a huge risk to have to take...treatment can kill you, but it is the best chance you have to beat the cancer that will kill you if it's not treated. so, you go ahead with treatment without much thought because you don't really have any other choice. then, i had to actually physically endure the treatments...which really did suck - no matter how many times i said i was 'fine'. meanwhile, as i was battling through the physical piece, i was continuously confronted with hugely emotional appointments, scans, and discussions about prognosis - which is a really tough thing to confront, as it has everything to do with mortality.
so, what's the point of bringing all of this up again? well, i've recently hit a pretty hard wall. for a week or so i was feeling overly emotional, agitated and fearful. i had no idea what was going on...so, my mind went immediately to relapse. why? because that's the scariest thing i can imagine right now...and for a while, everything that doesn't 'feel' right is going to make me jump to the thought of relapse. i may not stay there long, and i probably won't be able to make a good case for it, but that's just the new normal. it wasn't until i talked to a good friend (and four year lymphoma survivor) that i realized that this rut i've been in is totally normal. she explained that once you can get past the physical battle, and come down from the high of 'finally living life after cancer', it's par for the course to experience a significant low. she also mentioned that it's at this point, where i'm out of immediate danger, that i have finally allowed every part of the emotional journey that i pushed aside, out of necessity, to emerge. and, that's fairly overwhelming.
it wasn't until my conversation with her that i was able to take a deep breath. it feels as though i was clearly processing some serious emotions, but i didn't know why i was sad, upset, frustrated, etc. so, in an effort to relieve the emotions, i was trying really hard to figure out the cause of it. that only added more anxiety, because i could come up with no reason...so i just kept going to relapse (really? yes...that is, apparently, the answer to all unsolved puzzles at this point in survivorship). with her help, i was able to identify that it was a 'normal' step in the journey of a cancer survivor...and, in the end, it may be a productive step (i don't want to keep these emotions suppressed forever). so, i was able to sit back and appreciate this challenge for what it is, and look at it as just another lesson in all of this.
now, in this clarity, i wanted to write about it here for a few reasons. first, and most importantly, because it wasn't until i had the insight of someone who went through it before me that i could identify what was happening. and being able to identify it, and have it normalized, made all the difference. so, my hope is that i can do that for someone else. also, i think it's important that i stop minimizing my experience and appreciate it for what it is...a huge, life changing event. i told my friend that i felt melodramatic when i told people how it was without minimizing it...she told me that i was, in a different way, being just as melodramatic by minimizing it. and, lastly, i think it's important that all of you who read this blog hear that it hasn't been easy, and as much as i've minimized my challenges throughout my journey, i should have always told it like it is.
it's amazing what a difference it makes to be able to see things as they are. i sometimes wish i had the insight to do that on my own, but the reality of it is that i can't. at least not all of the time...and, that lends itself well to reaching out to other survivors to help offer their perspective, one that they worked really hard to have. this experience, or phase of the journey, is also an excellent reminder that i've landed in a 'new normal', and all of these phases are part of the life of a cancer survivor. just as being a cancer patient wasn't easy, being a cancer survivor will certainly have it's challenges. i just hope that i can face each of them with the same strength and poise that i did as a patient. it was a lot easier when each goal was clear (get to the next treatment, get through it, get to the next one, etc...), but in this phase, i will have to make each challenge into an opportunity to grow and develop as a person, and a cancer survivor. to appreciate each phase in this experience for what it is, and to continue to look for the lessons to be learned. and, i have to appreciate that these challenges are just as big as those i faced during treatment...just different.
now, over three months out of chemo and over a month out of radiation the gravity of it all is finally catching up with me. it has become apparent to me that, in my own way of coping and trying to help others cope, i have minimized my experience quite a bit. i never wanted people to feel sorry for me or be afraid for me (and i still don't), so i kept telling people 'it's not so bad', or 'well, i have a really good prognosis' or 'my oncologist says i'm doing really well'. all of those things are true - sort of. i never felt overwhelmingly awful about the whole experience, and i do have a good prognosis, and i did do very well. but, i was given a diagnosis of a life threatening disease, and told that i had to go through physically brutal treatments for the better part of a year - treatments that will pose a serious threat to my health down the road, but are the only way to get me out of immediate danger. that's a huge risk to have to take...treatment can kill you, but it is the best chance you have to beat the cancer that will kill you if it's not treated. so, you go ahead with treatment without much thought because you don't really have any other choice. then, i had to actually physically endure the treatments...which really did suck - no matter how many times i said i was 'fine'. meanwhile, as i was battling through the physical piece, i was continuously confronted with hugely emotional appointments, scans, and discussions about prognosis - which is a really tough thing to confront, as it has everything to do with mortality.
so, what's the point of bringing all of this up again? well, i've recently hit a pretty hard wall. for a week or so i was feeling overly emotional, agitated and fearful. i had no idea what was going on...so, my mind went immediately to relapse. why? because that's the scariest thing i can imagine right now...and for a while, everything that doesn't 'feel' right is going to make me jump to the thought of relapse. i may not stay there long, and i probably won't be able to make a good case for it, but that's just the new normal. it wasn't until i talked to a good friend (and four year lymphoma survivor) that i realized that this rut i've been in is totally normal. she explained that once you can get past the physical battle, and come down from the high of 'finally living life after cancer', it's par for the course to experience a significant low. she also mentioned that it's at this point, where i'm out of immediate danger, that i have finally allowed every part of the emotional journey that i pushed aside, out of necessity, to emerge. and, that's fairly overwhelming.
it wasn't until my conversation with her that i was able to take a deep breath. it feels as though i was clearly processing some serious emotions, but i didn't know why i was sad, upset, frustrated, etc. so, in an effort to relieve the emotions, i was trying really hard to figure out the cause of it. that only added more anxiety, because i could come up with no reason...so i just kept going to relapse (really? yes...that is, apparently, the answer to all unsolved puzzles at this point in survivorship). with her help, i was able to identify that it was a 'normal' step in the journey of a cancer survivor...and, in the end, it may be a productive step (i don't want to keep these emotions suppressed forever). so, i was able to sit back and appreciate this challenge for what it is, and look at it as just another lesson in all of this.
now, in this clarity, i wanted to write about it here for a few reasons. first, and most importantly, because it wasn't until i had the insight of someone who went through it before me that i could identify what was happening. and being able to identify it, and have it normalized, made all the difference. so, my hope is that i can do that for someone else. also, i think it's important that i stop minimizing my experience and appreciate it for what it is...a huge, life changing event. i told my friend that i felt melodramatic when i told people how it was without minimizing it...she told me that i was, in a different way, being just as melodramatic by minimizing it. and, lastly, i think it's important that all of you who read this blog hear that it hasn't been easy, and as much as i've minimized my challenges throughout my journey, i should have always told it like it is.
it's amazing what a difference it makes to be able to see things as they are. i sometimes wish i had the insight to do that on my own, but the reality of it is that i can't. at least not all of the time...and, that lends itself well to reaching out to other survivors to help offer their perspective, one that they worked really hard to have. this experience, or phase of the journey, is also an excellent reminder that i've landed in a 'new normal', and all of these phases are part of the life of a cancer survivor. just as being a cancer patient wasn't easy, being a cancer survivor will certainly have it's challenges. i just hope that i can face each of them with the same strength and poise that i did as a patient. it was a lot easier when each goal was clear (get to the next treatment, get through it, get to the next one, etc...), but in this phase, i will have to make each challenge into an opportunity to grow and develop as a person, and a cancer survivor. to appreciate each phase in this experience for what it is, and to continue to look for the lessons to be learned. and, i have to appreciate that these challenges are just as big as those i faced during treatment...just different.
June 6, 2010
national cancer survivor day!
today is national cancer survivor day, and i'm proud to be able to stand among the ever growing ranks of cancer survivors. it's a title that i'm very honored to wear, but not one that came easily...
it's been a long road...over the past year, i've had four chest x-rays, four CT scans, two PET/CT scans, two biopsies, four pulmonary function tests, one MUGA scan, one ECHO, a bone marrow biopsy, countless blood draws, twelve chemotherapy treatments, seventeen radiation treatments, and had a port put in and taken out. i've made three trips to dana farber in boston, countless trips to maine medical center, been in surgery twice, and had three minor procedures. i've gone from a medical team of two doctors to a team of eight doctors, a nurse practitioner, two nurses, a treatment team, and a handful of radiologists and pathologists who work behind the scenes.
...and today, on national cancer survivor day, i get to proudly wear my scars and radiation tattoos as a hard earned badge of honor. so, here's to those of you who have fought, are fighting or will fight...and here's to the hope that one day everyone who recieves a cancer diagnosis will also hear the word 'cure'.
it's been a long road...over the past year, i've had four chest x-rays, four CT scans, two PET/CT scans, two biopsies, four pulmonary function tests, one MUGA scan, one ECHO, a bone marrow biopsy, countless blood draws, twelve chemotherapy treatments, seventeen radiation treatments, and had a port put in and taken out. i've made three trips to dana farber in boston, countless trips to maine medical center, been in surgery twice, and had three minor procedures. i've gone from a medical team of two doctors to a team of eight doctors, a nurse practitioner, two nurses, a treatment team, and a handful of radiologists and pathologists who work behind the scenes.
...and today, on national cancer survivor day, i get to proudly wear my scars and radiation tattoos as a hard earned badge of honor. so, here's to those of you who have fought, are fighting or will fight...and here's to the hope that one day everyone who recieves a cancer diagnosis will also hear the word 'cure'.
June 2, 2010
what a difference a doctor makes
i read an interesting post the other day that really struck a chord with me, and as we approach national cancer survivors day (sunday, june 6th), i think it's appropriate to write a post about the people who dedicate their lives to making sure that there continues to be such a day...doctors.
this was the quote...
there's so much truth in this. we really do hang on every single word that our doctors say to us. i can remember every major discussion i've had with my doctors. i remember when i first found out i had a large mass in my chest, the doctor covering for my usual doctor told me 'if this is cancer, you can beat it'. i remember every time my primary care doctor has expressed her optimistic outlook on my situation. i remember every time that my oncologist has said something hopeful. and, i remember meeting my radiation oncologist and every word of that conversation that made me feel re-energized for the last step in my treatment.
it makes me so sad every time i hear or read about someone who has encountered a doctor on their cancer journey that has belittled them, or made them feel scared or anxious. we all know doctors are overworked, and that in the scheme of cancer, hodgkins is not close to the worst of what they see. but, to us, hodgkins is the worst we have ever faced, and is the scariest thing we can comprehend...and, i wish every doctor would be mindful of how much of a difference they make with every communication, whether it be verbal or not.
so, i want to dedicate this post to the doctors who have cared for me over the past year. thank you for giving me strength and optimism to carry through my treatment, and for allowing me to laugh at the situation when i had no other way to cope with how serious it actually was. please don't ever underestimate how much your choice to have a positive attitude, or to enter the room with a smile made all the difference in my journey. i, of course, give you credit for making incredibly difficult decisions regarding my medical treatment...but, i give you much, much more credit for the way in which you have treated me as an individual. you have given me an incredible amount of respect, honesty, and humor. you have never failed to recognize that i handle things in a unique fashion. you have always allowed me to be an active participant in my own care, and you have respected my decisions even when they haven't agreed with yours. you've had informed discussions with me, and you have never talked down to me, or implied that i don't know enough to keep up with you.
words will never be enough, but please know that i am grateful every day that i have fallen into the hands of such competent, caring and wonderful doctors. if every person who received a cancer diagnosis could have a team as wonderful as mine has been, the world would be a much better place.
this was the quote...
You may not realize this (or you may have just forgotten), but we hang on every word you say. We take everything literally. We watch the expression on your face and the way your eyes move when you talk to us. You can make or break our spirit with a word or a look. We know you're very busy and that you are overworked, exhausted and probably w-a-y under-compensated, but I'm fighting for my life here. Please choose your words carefully, let the compassion that led you into medicine show in your eyes, and give me a hug or squeeze my hand now and then.
And whatever you do, don't ever be guilty of saying that you don't want to give a patient "false hope." There's no such thing. A miracle could be just around the corner. It's happened before, and it will happen again and again and again.
And it just might be tomorrow.
And whatever you do, don't ever be guilty of saying that you don't want to give a patient "false hope." There's no such thing. A miracle could be just around the corner. It's happened before, and it will happen again and again and again.
And it just might be tomorrow.
there's so much truth in this. we really do hang on every single word that our doctors say to us. i can remember every major discussion i've had with my doctors. i remember when i first found out i had a large mass in my chest, the doctor covering for my usual doctor told me 'if this is cancer, you can beat it'. i remember every time my primary care doctor has expressed her optimistic outlook on my situation. i remember every time that my oncologist has said something hopeful. and, i remember meeting my radiation oncologist and every word of that conversation that made me feel re-energized for the last step in my treatment.
it makes me so sad every time i hear or read about someone who has encountered a doctor on their cancer journey that has belittled them, or made them feel scared or anxious. we all know doctors are overworked, and that in the scheme of cancer, hodgkins is not close to the worst of what they see. but, to us, hodgkins is the worst we have ever faced, and is the scariest thing we can comprehend...and, i wish every doctor would be mindful of how much of a difference they make with every communication, whether it be verbal or not.
so, i want to dedicate this post to the doctors who have cared for me over the past year. thank you for giving me strength and optimism to carry through my treatment, and for allowing me to laugh at the situation when i had no other way to cope with how serious it actually was. please don't ever underestimate how much your choice to have a positive attitude, or to enter the room with a smile made all the difference in my journey. i, of course, give you credit for making incredibly difficult decisions regarding my medical treatment...but, i give you much, much more credit for the way in which you have treated me as an individual. you have given me an incredible amount of respect, honesty, and humor. you have never failed to recognize that i handle things in a unique fashion. you have always allowed me to be an active participant in my own care, and you have respected my decisions even when they haven't agreed with yours. you've had informed discussions with me, and you have never talked down to me, or implied that i don't know enough to keep up with you.
words will never be enough, but please know that i am grateful every day that i have fallen into the hands of such competent, caring and wonderful doctors. if every person who received a cancer diagnosis could have a team as wonderful as mine has been, the world would be a much better place.
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