so, it's tuesday. it's tuesday, and i'm not having treatment today. it's a FANTASTIC feeling...there are no words to explain it, really.
it's funny...you fall into such a routine with cancer treatment, and i was so used to it that i never thought it would end. i would count down every time i finished another treatment, but it just felt like i was going to be counting forever. then, the last day of treatment happened, and we all got excited and celebrated, but i don't think i felt like it was over then, either. now, it's my 'treatment week', and it's my 'treatment day', but i just have to go in for a visit. maybe it will hit me today. maybe when they access my port, and then take the needle out instead of leaving it taped to my shirt it will hit me. or maybe when i just walk out back to visit the nurses, but don't have to be assigned to a recliner it will hit me. or maybe it won't hit me at all...but, i still don't have to come home and feel sick, tired, and beaten down.
today is a bittersweet day, though. while i go in and just have an easy visit, my friends sister is down at NIH and goes in today to begin pre-testing for her stem cell transplant with her sisters cells. she's has a type of lymphoma that has resisted all of her treatments, and now she needs to have a transplant with her sister as a donor. she's had a tough road, and it's hard to think that we've been in treatment for the same amount of time but had very different journeys. please keep her and her family in your thoughts...she's got such a positive attitude, and she's filled with so much optmism...she deserves a break, and i hope this is it.
whatever kind of day today is for you, enjoy it. we're never promised any day...so just be fortunate for today, and don't take it for granted. as james dean said 'dream as if you'll live forever, live as if you'll die today'.
March 23, 2010
March 18, 2010
March 17, 2010
moving on...
how do you move on after cancer? or do you ever really move on? as i've gone through all this, i have assumed that when i was declared in remission, or when i finished treatment, or when i reach one year post treatment i'll move on. and, now, i've become aware that i probably never will move on in the same way that i've moved on with other major life events.
cancer is different, it's changed everything. from the minute i recieved a cancer diagnosis, my world was forever changed. at twenty four, while everyone else was worrying about graduate school, relationships, finances and where they would be in five years, i was forced to face my own mortality and take on a disease that would kill me if i didn't do anything. i had to quickly come to grips with everything traumatizing about it and jump into months of grueling treatments, scans, labs, exams, hospital procedures and doctors appointments. so, i got a break from all the things all my friends were stressing about...but, it wasn't exactly the break that i would have envisioned.
now, as i look forward to finishing all my treatments in the next month or so, and getting back to my 'normal' twenty something life, i realize i may never completely move on. everyone outside of the cancer world expects me to jump back in to my life with cancer behind me. but, how can something that changed everything about you ever really be behind you? it simply can't...it will always be with me. explaining that to everyone, it seems, will be my next greatest challenge.
some days i wish i could stay inside the cancer world forever. it's a world where everyone just gets it. i don't have to explain what it's like to go through everything i've gone through, and i can assume that everyone in that world just understands that cancer is part of me now. but, most people in my world don't get it...because, thankfully, most people in their twenties haven't experienced cancer.
so, as i continue on this next chapter in my life, i hope that i can find some balance between the two worlds i live in. the cancer world has given me perspective, wisdom, strength and a will to live each and every day fully. the rest of the world has given me an opportunity to use everything i've gained in the cancer world in a productive and positive way. i will strive to take the best parts of my cancer world with me back into the rest of the world, and leave the negative parts behind to visit only when i choose to venture back into the cancer world - which i may do from time to time...
...but, those will just be visits, when i need a break from the rest of the world, a reminder of where i've been, and a reminder of why i'm here.
cancer is different, it's changed everything. from the minute i recieved a cancer diagnosis, my world was forever changed. at twenty four, while everyone else was worrying about graduate school, relationships, finances and where they would be in five years, i was forced to face my own mortality and take on a disease that would kill me if i didn't do anything. i had to quickly come to grips with everything traumatizing about it and jump into months of grueling treatments, scans, labs, exams, hospital procedures and doctors appointments. so, i got a break from all the things all my friends were stressing about...but, it wasn't exactly the break that i would have envisioned.
now, as i look forward to finishing all my treatments in the next month or so, and getting back to my 'normal' twenty something life, i realize i may never completely move on. everyone outside of the cancer world expects me to jump back in to my life with cancer behind me. but, how can something that changed everything about you ever really be behind you? it simply can't...it will always be with me. explaining that to everyone, it seems, will be my next greatest challenge.
some days i wish i could stay inside the cancer world forever. it's a world where everyone just gets it. i don't have to explain what it's like to go through everything i've gone through, and i can assume that everyone in that world just understands that cancer is part of me now. but, most people in my world don't get it...because, thankfully, most people in their twenties haven't experienced cancer.
so, as i continue on this next chapter in my life, i hope that i can find some balance between the two worlds i live in. the cancer world has given me perspective, wisdom, strength and a will to live each and every day fully. the rest of the world has given me an opportunity to use everything i've gained in the cancer world in a productive and positive way. i will strive to take the best parts of my cancer world with me back into the rest of the world, and leave the negative parts behind to visit only when i choose to venture back into the cancer world - which i may do from time to time...
...but, those will just be visits, when i need a break from the rest of the world, a reminder of where i've been, and a reminder of why i'm here.
March 14, 2010
side effects 101
so, lots of you have asked about the side effects of treatment that i've experienced for the last six months. it was something i chose to keep relatively private while i was still going through it. i think it probably has something to do with how unpredictable it all was, and how i had no control over it - so, sharing it would just open up a wound i wanted to keep covered. i also don't like to have anyone feel sorry for me...which i know is a normal reaction, but i had it pretty easy in the world of cancer treatment, and i just did what i had to. but, now that treatment is over, i'll give you a little glimpse of the world of side effects...
...and, just as a note, this post is really for the benefit of those of you reading this who have to face, or have faced the hodge, because we all know how nice it is to know what other people have experienced. for those of you who haven't, it's not intended to be a list of complaints...more an explination of my experience for those of you who have asked what it's like, or those of you who haven't asked but have wondered anyways. so, read with that in mind...
nausea. this was the worst, and also the most unpredictable. some treatments i'd be fine, and some i was so sick i couldn't even get water down. for the most part, i'd start feeling sick right after treatment, and feel really sick for day two and three, and start to feel better on day four. it rarely lasted past day four. i really have no idea what made some worse than others, but the bad ones were really, really bad. i didn't vomit once, but some days i wish i had. this side effect also ruined some foods for me. when they tell you not to eat anything you like around treatment, they mean it. ugh.
fatigue. really not too bad for me, but my main complaint leading up to my diagnosis was fatigue, so i guess it's all relative. in fact, i started to feel more energy than i had in a couple years after about four treatments. it wasn't until treatment eight or so that the fatigue really hit me. but, it wasn't the same kind of fatigue i had before diagnosis...i really only noticed it at the end of the day when i had done a lot and just felt tired earlier. it was not at all life limiting, and aside from being in bed at the same time as people in their eighties, i think i fared quite well.
neutropenia. stem cells are rapidly dividing cells, so as the chemo drugs kill the cancer cells, they also wipe out any other rapidly dividing cells. white blood cells take the hardest hit as they are the fastest to grow and die. this leaves you prone to any infection...colds, the flu, or what is called a neutropenic fever - which is when the bacteria inside your body, which doesn't cause a problem for someone with a normal immune system, causes an infection. throughout treatment, my white counts (specifically neutrophils - the ones that fight infection) were always very low. below one thousand is considered neutropenic and high risk for infection, and mine were below one thousand almost every time i had treatment, and as low as three hundred for a few treatments. i was lucky that i only developed one cold, and never had a fever. but, i had to be super careful, and had to be mindful of who i was around, washing my hands, and avoiding certain foods. i'll be happy to shed the restrictions that came with this one.
hair loss. i didn't lose all my hair, but it's definitely more shabby than it was pre-cancer. i lost quite a bit of hair on my head, my eyebrows are pretty pathetic, my eyelashes are thinner, and i don't think the hair under my arms is growing anymore. but, of course, i still have to shave my legs...figures, right? oh, and the hair in my nose has mostly fallen out...which you'd think wouldn't be a big deal, because everyone thinks it's gross anyways. i would have agreed with you, until i realized the source of my constant runny nose was the lack of hair to slow it down. i could do without the hair under my arms growing back, but i'd like to put a rush order in for the nose hair returning.
those were the big ones i had to deal with. some other less prominent side effects included; constipation, headaches, insomnia, hot flashes (hormones get a little whacky as the chemo surpresses your ovaries for a bit), sensitivity in my fingertips, rining in my ears, sore throat, weight gain, messed up tastebuds, acid reflux, difficuly concentrating, and i'm probably missing a few...
so, there it is...a little glimpse into my world for the last six months. it wasn't glamorous, not even a little...but, i did it, and it's over, and that's all that really matters.
...and, just as a note, this post is really for the benefit of those of you reading this who have to face, or have faced the hodge, because we all know how nice it is to know what other people have experienced. for those of you who haven't, it's not intended to be a list of complaints...more an explination of my experience for those of you who have asked what it's like, or those of you who haven't asked but have wondered anyways. so, read with that in mind...
nausea. this was the worst, and also the most unpredictable. some treatments i'd be fine, and some i was so sick i couldn't even get water down. for the most part, i'd start feeling sick right after treatment, and feel really sick for day two and three, and start to feel better on day four. it rarely lasted past day four. i really have no idea what made some worse than others, but the bad ones were really, really bad. i didn't vomit once, but some days i wish i had. this side effect also ruined some foods for me. when they tell you not to eat anything you like around treatment, they mean it. ugh.
fatigue. really not too bad for me, but my main complaint leading up to my diagnosis was fatigue, so i guess it's all relative. in fact, i started to feel more energy than i had in a couple years after about four treatments. it wasn't until treatment eight or so that the fatigue really hit me. but, it wasn't the same kind of fatigue i had before diagnosis...i really only noticed it at the end of the day when i had done a lot and just felt tired earlier. it was not at all life limiting, and aside from being in bed at the same time as people in their eighties, i think i fared quite well.
neutropenia. stem cells are rapidly dividing cells, so as the chemo drugs kill the cancer cells, they also wipe out any other rapidly dividing cells. white blood cells take the hardest hit as they are the fastest to grow and die. this leaves you prone to any infection...colds, the flu, or what is called a neutropenic fever - which is when the bacteria inside your body, which doesn't cause a problem for someone with a normal immune system, causes an infection. throughout treatment, my white counts (specifically neutrophils - the ones that fight infection) were always very low. below one thousand is considered neutropenic and high risk for infection, and mine were below one thousand almost every time i had treatment, and as low as three hundred for a few treatments. i was lucky that i only developed one cold, and never had a fever. but, i had to be super careful, and had to be mindful of who i was around, washing my hands, and avoiding certain foods. i'll be happy to shed the restrictions that came with this one.
hair loss. i didn't lose all my hair, but it's definitely more shabby than it was pre-cancer. i lost quite a bit of hair on my head, my eyebrows are pretty pathetic, my eyelashes are thinner, and i don't think the hair under my arms is growing anymore. but, of course, i still have to shave my legs...figures, right? oh, and the hair in my nose has mostly fallen out...which you'd think wouldn't be a big deal, because everyone thinks it's gross anyways. i would have agreed with you, until i realized the source of my constant runny nose was the lack of hair to slow it down. i could do without the hair under my arms growing back, but i'd like to put a rush order in for the nose hair returning.
those were the big ones i had to deal with. some other less prominent side effects included; constipation, headaches, insomnia, hot flashes (hormones get a little whacky as the chemo surpresses your ovaries for a bit), sensitivity in my fingertips, rining in my ears, sore throat, weight gain, messed up tastebuds, acid reflux, difficuly concentrating, and i'm probably missing a few...
so, there it is...a little glimpse into my world for the last six months. it wasn't glamorous, not even a little...but, i did it, and it's over, and that's all that really matters.
March 10, 2010
six cycles = TOTALLY DONE!
i did it!!! officially DONE with this chapter of treatment. i can't possibly tell you how wonderful it feels, and to wake up this morning and know that chemo is over!
yesterday was wonderful. i have the most incredible support network and cancer team. my dad and boyfriend came with me to treatment, and it was wonderful to share the excitement with them, and see how excited they were. sometimes i don't realize how hard this has been for other people, and it was really nice to see their relief, especially my dad's, when it was all over. my dad has been the absolute best throughout this entire thing...always coming with me to treatment, hospital appointments, all the appointments at dana farber, and consults up here. he's just the best - thanks dad. and, for those of you who don't know, luke and i started dating after my forth treatment. that, in itself, says a lot about him. anyone who's willing to start a new relationship in the midst of a cancer journey is really special. he's dealt with all my ups and downs, my scanxiety, the sometimes volitile change in moods, all the restrictions i've had and so much more. he's become my best friend, and really is more than i ever could have asked for in another person.
the level of excitement from each member of my cancer team was overwhelming - they're an amazing group of people. my oncologists nurse and i reminisced about the long road it's been until now, and then had a quick reflection of where we were six months ago...as she was holding my hand while i got a bone marrow biopsy. she promised me that she never wanted to do that again - i agree! my oncologist came in excited, and did a quick exam, approved my treatment, and said 'let's talk about follow up later, but right now let's get this done'. he rocks. so, i'll go back to see him in two weeks and we'll discuss other things, i was happy to leave the focus of yesterday to being done. then it was on to the last infusion, where i was greeted by the most wonderful group of nurses in the entire world. there aren't enough words to thank them - even the ones i haven't had as much interaction with expressed their excitement. i know they get it - finishing treatment is a big deal - but their kindness is incredible. treatment was uneventful...lots of chatting and visiting, and just being overwhelmingly happy. at the end of the treatment i gave the three nurses who have really pulled me through the most (my treatment nurse, my oncologists nurse, and another nurse who's taken care of me a couple times and is just fantastic) a framed quote from 'the velveteen rabbit', and then i gave jenny (my treatment nurse) a copy of the essay that i submitted to the 'oncology nurse of the year' contest. another nurse called in her nurse manager, and they all congratulated her. it was wonderful to finally be able to thank her for everything she's done, and for all the other nurses she works with to be there. she's an incredible, incredible person and i never would have made it through without her.
when i came home, i was greeted by a big banner on the front of the house that said 'congratulations' and more decorations inside - my mom had decorated while we were gone. and, now on to the final few days of post-treatment recovery. this is where mom comes in. she's the only person i want around when i feel crappy. and, lately, she's taken the few days after my treatments off to be here with me. and then, on friday, when i feel better, we go out for a comfort food lunch, do a tiny bit of shopping, and just have a mini girls day. she's always been the person i want to be around when i'm sick, and she's never failed to be the best at taking care of me. i love you, mom!
so, there it is. i finally finished the biggest challenge of my life so far! i've still got a little ways to go, but these next few weeks are about celebrating this accomplishment - and my blog will reflect that. of course, i'll get back to posting more about the next chapter of my journey when it gets closer...but for now, i'm done, and i'm going to celebrate!
yesterday was wonderful. i have the most incredible support network and cancer team. my dad and boyfriend came with me to treatment, and it was wonderful to share the excitement with them, and see how excited they were. sometimes i don't realize how hard this has been for other people, and it was really nice to see their relief, especially my dad's, when it was all over. my dad has been the absolute best throughout this entire thing...always coming with me to treatment, hospital appointments, all the appointments at dana farber, and consults up here. he's just the best - thanks dad. and, for those of you who don't know, luke and i started dating after my forth treatment. that, in itself, says a lot about him. anyone who's willing to start a new relationship in the midst of a cancer journey is really special. he's dealt with all my ups and downs, my scanxiety, the sometimes volitile change in moods, all the restrictions i've had and so much more. he's become my best friend, and really is more than i ever could have asked for in another person.
the level of excitement from each member of my cancer team was overwhelming - they're an amazing group of people. my oncologists nurse and i reminisced about the long road it's been until now, and then had a quick reflection of where we were six months ago...as she was holding my hand while i got a bone marrow biopsy. she promised me that she never wanted to do that again - i agree! my oncologist came in excited, and did a quick exam, approved my treatment, and said 'let's talk about follow up later, but right now let's get this done'. he rocks. so, i'll go back to see him in two weeks and we'll discuss other things, i was happy to leave the focus of yesterday to being done. then it was on to the last infusion, where i was greeted by the most wonderful group of nurses in the entire world. there aren't enough words to thank them - even the ones i haven't had as much interaction with expressed their excitement. i know they get it - finishing treatment is a big deal - but their kindness is incredible. treatment was uneventful...lots of chatting and visiting, and just being overwhelmingly happy. at the end of the treatment i gave the three nurses who have really pulled me through the most (my treatment nurse, my oncologists nurse, and another nurse who's taken care of me a couple times and is just fantastic) a framed quote from 'the velveteen rabbit', and then i gave jenny (my treatment nurse) a copy of the essay that i submitted to the 'oncology nurse of the year' contest. another nurse called in her nurse manager, and they all congratulated her. it was wonderful to finally be able to thank her for everything she's done, and for all the other nurses she works with to be there. she's an incredible, incredible person and i never would have made it through without her.
when i came home, i was greeted by a big banner on the front of the house that said 'congratulations' and more decorations inside - my mom had decorated while we were gone. and, now on to the final few days of post-treatment recovery. this is where mom comes in. she's the only person i want around when i feel crappy. and, lately, she's taken the few days after my treatments off to be here with me. and then, on friday, when i feel better, we go out for a comfort food lunch, do a tiny bit of shopping, and just have a mini girls day. she's always been the person i want to be around when i'm sick, and she's never failed to be the best at taking care of me. i love you, mom!
so, there it is. i finally finished the biggest challenge of my life so far! i've still got a little ways to go, but these next few weeks are about celebrating this accomplishment - and my blog will reflect that. of course, i'll get back to posting more about the next chapter of my journey when it gets closer...but for now, i'm done, and i'm going to celebrate!
March 7, 2010
'the tyranny of positive thinking'
this is a fantastic chapter of a book called 'the human side of cancer'. it's definitely worth taking a look at...both for those of us fighting cancer who are told to always have a positive attitude, and those of you who aren't fighting cancer to understand the phenomenon of attitude and cancer.
March 5, 2010
radiation, anyone?
welcome to the start of my radiation story...
...so, the plan is to have radiation after i finish chemo. why? because i had a very large mass in my chest, and for those of us with 'bulky' disease (the hodge word for a mass larger than 10cm...mine was 17x10x10cm) there is no research that shows that chemo alone is the best choice. especially in my case, with one of the larger masses that any of my doctors have ever seen, we felt that radiation was a necessity from day one. so, basically the plan was six months of chemo to shrink the mass i had, and kill any disease that may have been circulating in my body but wasn't detected by scans (this disease would be very small and the chemo would definitely take care of it). although it appears from my scans that the remaining mass in my chest (which i will have forever) no longer contains active cancer cells, there's still a chance there's enough life left in it to become cancer again. the radiation will hit whatever mass is left, even though they think it's just scar tissue, and kill any rogue cells so they don't have a chance in hell at surviving.
so, yesterday, i had a consult with the radiation oncologist who'll be leading the team of people involved in the actual radiation treatment (it involves a whole lot of different people). i had a lot of anxiety about meeting him, mainly because i've been at this for over seven months, and everyone on my oncology team knows everything about me - i didn't want to add someone new to the mix this late in the game when i'm just ready to be done. however, he turned out to be exactly what i needed right now. he had a positive spin on everything that he said, and really made me feel so much more optimistic about all this than i have been lately. so, kudos to my medical oncologist for referring me to him, and extra kudos to the radiation oncologist for being a fantastic addition to my oncology team...i'm glad to have him.
what he said about the radiation was very straight forward...he believes that since i've had an excellent response to chemo, that his job will be to clean up whatever may be left and ensure the 90-95% chance of being cured. the excellent response to chemo does two things...it decreases the 'radiation field' (the area they hit), and he can use a relatively low dose of radiation. of course, it carries risks...but, he believes that the benefit outweighs the risks, and that we can do the radiation safely and effectively. he also told me that the radiation these days is much safer and carries less risks than the radiation twenty years ago (which is what they have data on for long term effects). additionally, if something does come up, it will be later in life, and he said that medicine is changing so much that we'll have an entirely different way of dealing with it then. so, basically, as my primary care doctor told me, and i say all the time 'we treat the reality now, and worry about the what'if's later...if they ever happen'.
next on the to-do list.... finish treatment (four days until the last day!), go to dana farber for a second opinion on the radiation plan from a hodge expert, have a post-treatment PET scan, then go to the radiation planning appointment.
...and, perhaps, a little party in there, too!
...so, the plan is to have radiation after i finish chemo. why? because i had a very large mass in my chest, and for those of us with 'bulky' disease (the hodge word for a mass larger than 10cm...mine was 17x10x10cm) there is no research that shows that chemo alone is the best choice. especially in my case, with one of the larger masses that any of my doctors have ever seen, we felt that radiation was a necessity from day one. so, basically the plan was six months of chemo to shrink the mass i had, and kill any disease that may have been circulating in my body but wasn't detected by scans (this disease would be very small and the chemo would definitely take care of it). although it appears from my scans that the remaining mass in my chest (which i will have forever) no longer contains active cancer cells, there's still a chance there's enough life left in it to become cancer again. the radiation will hit whatever mass is left, even though they think it's just scar tissue, and kill any rogue cells so they don't have a chance in hell at surviving.
so, yesterday, i had a consult with the radiation oncologist who'll be leading the team of people involved in the actual radiation treatment (it involves a whole lot of different people). i had a lot of anxiety about meeting him, mainly because i've been at this for over seven months, and everyone on my oncology team knows everything about me - i didn't want to add someone new to the mix this late in the game when i'm just ready to be done. however, he turned out to be exactly what i needed right now. he had a positive spin on everything that he said, and really made me feel so much more optimistic about all this than i have been lately. so, kudos to my medical oncologist for referring me to him, and extra kudos to the radiation oncologist for being a fantastic addition to my oncology team...i'm glad to have him.
what he said about the radiation was very straight forward...he believes that since i've had an excellent response to chemo, that his job will be to clean up whatever may be left and ensure the 90-95% chance of being cured. the excellent response to chemo does two things...it decreases the 'radiation field' (the area they hit), and he can use a relatively low dose of radiation. of course, it carries risks...but, he believes that the benefit outweighs the risks, and that we can do the radiation safely and effectively. he also told me that the radiation these days is much safer and carries less risks than the radiation twenty years ago (which is what they have data on for long term effects). additionally, if something does come up, it will be later in life, and he said that medicine is changing so much that we'll have an entirely different way of dealing with it then. so, basically, as my primary care doctor told me, and i say all the time 'we treat the reality now, and worry about the what'if's later...if they ever happen'.
next on the to-do list.... finish treatment (four days until the last day!), go to dana farber for a second opinion on the radiation plan from a hodge expert, have a post-treatment PET scan, then go to the radiation planning appointment.
...and, perhaps, a little party in there, too!
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