December 22, 2010
i also owe you all (or those of you who still read this thing) an update. especially since i just had a really important visit at dana farber in boston. i went down just over a week ago for a scan, blood work and a visit with my oncologist. for those of you who missed it, i have decided to drive to boston for my follow up every three months...while it's a little out of the way, my oncologist there is totally worth it. she was telling me that she sometimes gets criticized by her colleagues for being too positive...clearly, that's why we get along so well. anyways...for the news you really care about. my scan was totally clean...my residual masses have shrunk about one centimeter in the last three months, and now measure 5x3.1cm...compared to 17x10x10cm at diagnosis...that's about a 70% reduction overall, pretty fantastic! and, it has continued to shrink, which is even better than just staying the same! blood work was excellent, and my exam was pretty stellar, too. the only odd thing i have left is a ringing in my ears that worsens with alcohol consumption. my oncologist has no idea and has never seen it before but thinks it may be because of the vinblastine (the V in ABVD). my pcp also had no idea, and they both suggested i could see an ENT, but i told them i'm all set with meeting any new specialists.
so, health wise, life is good. in other news, we're planning our wedding, which is super fun! it's so nice to be looking to the future and having so many wonderful things happening. i really am so fortunate to be marrying my best friend...he's such a blessing in my life. i'm also currently on a two week break from all my responsibilities, which is a much needed mental break for me. no classes, no papers to write, no field placement hours to complete...just me and my own schedule. so nice.
for those warriors still in treatment...just know that life does get better, and there is life after treatment, and it's fantastic! i don't like to say there's life after cancer, because i think cancer will always be a part of our lives (hopefully in a productive, remind us of our perspective kind of way).... but, i remember thinking that treatment would never end, and when it did, i remember thinking that my anxiety would never get better and i'd never have a 'normal' life again. i have no idea when life got back to a new normal, but it did...and while it'll never be the same again, i really do think it's so much better. the best advice i ever got, and that i always pass along, is to take it one day at a time and to not get too far ahead of yourself. i always say "if you just keep putting one foot in front of the other, eventually you'll get where you need to be". of course there are still struggles, but like anything else...once you've beat cancer, it feels as though there's nothing you can't do.
i did have some more profound thoughts that i had intended to share, but those may have to wait for another day.... i will do my best to add some blog and coffee time into my schedule over the next few weeks. happy holidays!
November 25, 2010
for life. this one still tops the list. i have a unique opportunity at a young age to appreciate the fact that i wake up every day, to realize that life is delicate, and that none of us are promised tomorrow. i feel fortunate to get that, and to be able to live the rest of my life just being thankful to be here, to make new memories, and to enjoy the beauty of the world.
for love. just over a year ago, i went out for coffee with a man who i knew instantly was meant to be in my life. he's my best friend, my greatest source of strength, and the best partner in life i could ever ask for. for those of you who don't already know...we got engaged last friday, and i could not be more excited. i'm so fortunate to have him in my life, and i'm reminded of that every day.
for family. i'm blessed to have a loving and supportive family, and i'm blessed to be marrying into a family that i love. and, i'm blessed that our families also adore each other. i know that's rare, and i feel very fortunate.
for friends and fellow warriors. for those friends who stuck it out and proved what true friendship means. and, especially for those friends i've made along the way...my fellow warriors who serve as a constant reminder that life is beautiful, and it's our job to live it.
for feeling healthy. a year ago yesterday i had my interim PET scan that showed i was technically in remission. every day since finishing treatment i've felt better, and while i still struggle with some things...i feel better today than i have in years.
for modern medicine. even though chemotherapy sucks, and radiation is no fun, seventy years ago everyone who was diagnosed with hodgkin's would die. today, most are cured...and while i know too many who aren't, there are still options beyond a cure.
for being a student. odd, eh? definitely thankful for the opportunity to pursue a career i'm excited about, and to be furthering my education. sure, it has it's moments, but it really is a wonderful thing.
for having hair. and that it came back curly. and for having eyebrows. really, everything about this one is something to be so thankful for.
for the cancer experience. yea, i know it sounds odd.... and i'm not thankful for the disease. the experience, however, shook up everything i knew, forced me to face things i never wanted to, and gave me an opportunity to learn about myself and life in a way that wouldn't have happened without cancer.
...the list really could go on. i just feel so fortunate this year. just to wake up every day, to be surrounded with love, and to be able to look forward. life is a beautiful thing, and if you don't stop and appreciate it...you'll miss everything.
October 31, 2010
halloween last year was a little rough...i remember getting treatment on that friday, and all the nurses were dressed in costume. it was the first time i got really, really sick from treatment...so, i still have a little nausea thinking about that one. ugh. thank goodness for feeling healthy this year.
life is fantastic right now...almost through my first semester in my MSW program (crazy), and have been fortunate to find my 'groove' with the work load, and don't feel stressed or overwhelmed anymore. and, it seems i've somehow avoided the chemo brain - i've been able to pull all A's so far, which i'm pretty proud of. i was so sure i'd suffer from lasting chemo brain, but i decided to go for it anyways. aside from a little problem with my attention span (it almost feels like i have ADHD), i have no complaints of any cognitive difficulty. it's funny what you feel grateful for.
i've been networking with the oncology world up here, and plan to start shadowing the oncology social worker at the hospital, as well as the pain and palliative care social worker, and perhaps a few others. i'm really nervous to find out where my own 'stuff' comes up, but i'm more excited than anything...and i know i have to manage this challenge before i can do good work on my own next year when i actually do my placement in oncology.
life outside of school is wonderful, too. we've been enjoying the beautiful fall weather, and really taking in the beauty of the little things. apple picking, pumpkin spice lattes, the leaves changing, the crisp air...all things that remind me how beautiful life is. fall is by far my favorite season, and i feel fortunate to be able to take it all in this year. i even made my first apple pie (i've always just aided my dad in making his)!
i'm also learning a lesson in keeping perspective. once you've received a cancer diagnosis, your life is forever changed. but, once the physical battle is over, it's easy to fall back into a pattern of life and forget the perspective you promised yourself you'd hang on to for dear life once this was over. i have forgotten many times. mostly when i started school, and i was running myself into the ground trying to get all my work done...and then beating myself up when i couldn't. my stress level sky-rocketed, and i realized i wasn't really spending as much quality time with the ones i love...or taking time for myself. then, i reminded myself of what my priorities actually were. my health and my loved ones definitely come before school. it's not that i'm not totally invested in school, because i am...it's just that i don't want to put so much into school that i'm not living the life i want. lots of people have said..."well it's just two years and then i'll get back to my life". what i realize, that most don't, is that we're not promised tomorrow, let alone two years from now. and, i get that in a way that's more real than i would have ever imagined. so, while so many people have put their lives on hold for the next two years...i've decided to keep living. i'll work hard and invest myself in my education and my career...but not to the expense of the rest of my life. i want to make sure that i can go to bed every night knowing that if i didn't have tomorrow, that i was happy with today. life really is one day at a time, and it's our responsibility to make sure that we live each day with that in mind. so, when i get stressed, or lose my perspective for a minute, i stop and remind myself where i've been...
it's all about balance. and perspective. cancer warriors, always remember how lucky we are to have that.
September 30, 2010
what's happened in the last month.... in the cancer side of my life, i passed some serious milestones. september 16th was a year since i was diagnosed, and september 25th was a year since i had my first chemo treatment. i passed both of them with less anxiety than i thought i'd have...but that's probably because i was too busy with school. i continue to feel amazing. i visited dana farber at the end of august, and was given a clean bill of health, and decided that's where i'll do all my follow up...for now. i had annual blood work with my primary care doc, and everything looked amazing. most exciting was my iron...when i was diagnosed my iron was 9 and my saturation was 4%. i was told it was anemia from the cancer, and once we treated the cancer, it'd correct itself. i guess i was doubtful, i didn't think it'd be that simple...but i guess it was. my iron is now 74 and 24% saturation. so crazy how the body works...it still amazes me.
in my other life, things are wonderful. i started my masters in social work at the end of august, and while it's sufficiently kicking my butt, i love every second of it. between five classes, four days a week at my internship, and a research assistant position for some social work professors, i hardly have time to breathe. but i credit my sanity in the cancer part of my life a lot to how busy i am...and how much i love what i'm doing...and how good i feel about where i am. i also have a cool opportunity to process my own 'stuff' that i've picked up from cancer and other parts of my life. there's a huge belief in the social work curriculum that if you can't identify your own stuff and where it comes up in your work, you can't do good work. it's an interesting ride, i'm just trying to soak it up as much as i can between all the work they make us do.
so, things are good. i'm still trying to figure out how my cancer life and non-cancer life intersect, and when it'll feel like i'm one person again. i think this will definitely happen when i start to work in oncology, but i'm hoping to figure it out a little bit before then so i don't do anything too damaging when i'm working with a cancer patient and find myself in the midst of my own stuff. but, like everything else, i'm just trying to ride it out, and as one of my classmates said 'trying to be where my feet are'.
August 21, 2010
i think a lot of the anxiety had to do with my scan...and waiting to find out if i was cancer free, if i could move on with life, or if i'd find myself back in, well, a place i don't ever want to be in again. and, then, i had my scan, and found out i was cancer free. you'd think, and i had fully expected, to be ecstatic and go on to celebrate for days on end. let me assure you, it went nothing like that. a lot of that had to do with the way the news was delivered (in a not so super excited way), but it just seemed to be that i had been granted permission to continue to live without cancer. there are no guarantees i'm cured, or that i don't have any other issues...just that, for now, i'm free of cancer. and, don't get me wrong, that's a wonderful place to be in, but it's certainly not what i expected it to be. i know it will get easier as time goes on, but i think in some way, we're all waiting for a doctor to tell us that we'll be perfectly fine...but it's cancer, and life - there are no such promises.
so, as i learn to accept the reality that i will live life in three month increments for a while, i have to continue to push forward and have hope that every doctor's visit will be permission to live a little longer. of course, that sounds silly, and you're thinking 'no one can tell you to live...you have to do it anyways'. well, yes...and i am, i'm starting my master's, i'm getting back to my healthy self, and i'm moving forward...but, there will be hesitation for a while, and that's just a part of this crazy journey i've found myself on.
but, in the meantime, i've begun to re-build. cancer puts your life on hold from the time you're diagnosed to the time you finish treatment. again, you may say 'you should always continue to live', and again you're right, but there are definite limitations. cancer takes a lot of things away from you - mental and physical health, progress towards long term goals, money, and so on. and, it's not like once you finish treatment those things easily come back...you're tired, you're worn down, you're emotional, and you have no idea who you are. you really have to work hard to re-build, and i don't think anyone should expect it to come easy.
perhaps my biggest challenge has been dealing with the emotional fall-out of cancer survivorship. i went from someone who's always been well psychologically, to someone who could really use help getting through a really tough time. and, as someone who's never needed help in this area, it was really hard to accept it. but, working with a counselor (and one who only deals with cancer patients/survivors) was the best thing i could have done for myself and everyone in my life. i've learned to recognize and accept the emotions and phases i experience on this end of the cancer journey, and i've learned ways to get through each of them. cancer is tough...but, emotionally, survivorship is tougher. it doesn't make you weak to need help.
i've also taken a new pride in re-building my health. this, also, isn't easy. i'm still tired, a little overwhelmed, and really busy. but, let's face it...in all the things we can't control about our health, there are many things we can control. i know i had some pretty harsh treatment that will put me at a higher risk of some serious health conditions - many of which are now out of my control. however, i know i can control whether or not i get out of bed every morning and go for my run. some days, this is about as easy as it was to convince myself to go to a counselor...but, every piece of evidence in the world says exercise is vital for health. and, to know you're doing something good for yourself every day is an amazing feeling.
and, lastly, i'm pushing forward towards those long term goals i put on hold for the last year. i start my master's in social work a week from monday...the first step in what i know will be an amazing career as an oncology social worker. everyone keeps telling me how much work it will be, and how stressed i'll be. yes, it will be a lot of work. but i really do believe that if i can survive a year with cancer, that i can certainly get through a master's degree, too.
so, three months and three weeks out of treatment, i can say that with each day...life is better, and this journey becomes more and more of a blessing. i've learned so much in the last year, and while it's the toughest journey i've ever been on, i've definitely realized that nothing worthwhile ever comes without a fight. when things come easy we often don't appreciate them as we should...and now, i get to feel grateful to simply wake up every day and do something to make my life, and the life of others, more meaningful.
for those of you in a phase of this journey where you can't see the other side (especially you texas warriors), just know that you'll get there, and that this challenge you're facing...whatever it is...is part of the path we're on, and that there's something to be gained from it. just put one foot in front of the other, and you'll get to where you need to be.
July 29, 2010
July 25, 2010
over the last year i've handled the toughest challenges life has ever thrown at me...physically, mentally and emotionally. and, i know i'm a better person because of it. i feel as though i've been totally grounded...i feel as though i'm finally the person i always wanted to be. i no longer worry (as much) about the little things, i don't get caught up in meaningless drama that so many people around me do. i've realized that these things don't matter, and are so small on the scale of things we could possibly be dealt. every time i face an issue, i remind myself that it's not worse than what i've been through in the past year. it's not that these little things don't bother me...they often do. it's just that now i realize that things are as they are...and that there's always a way to get through something. if i can push myself through a year with cancer, i can certainly push myself through the every day challenges life throws my way...
i've also developed more depth and understanding of my own emotions. i remember a fellow survivor telling me before this all started that her highs are now much higher, and her lows are lower. i guess the best way to say it is that if emotions were colors, all of mine would be more bold than they ever have been. and, of course, with a heightened range of emotion i experience sadness and fear more than ever before...but that allows me to recognize how happy i am, and to find joy and excitement in the little things each and every day.
and, i have direction. i know what i want to do with my life, and i've had a serious fire lit under me that will propel me forward towards that goal...even when it gets tough. i feel like i've found my place in this world, and that my experiences this past year (and those that will continue forever) have been totally worth it to be where i am now.
so, this year, as i spend this weekend reflecting on where i was at this exact same time last year...i'm so grateful. not just to be on the 'other side', but to have come out of this a better, and more real person than i ever have been. i'm more genuine, and more 'me'...and, now i feel as though i actually know who 'me' is. it's a wonderful feeling. but, of course, this feeling of total happiness doesn't come without moments of sadness and fear of the unknown. but, i wouldn't trade where i am now for anything in the world...
July 22, 2010
but, just a little bit. i still think about cancer every day, have moments of serious anxiety, and worry about the 'what if'. it's going to be a long process to recovery, if there is such an end destination. i'm slowly learning to re-direct myself to something productive when i feel anxiety coming on. i've created epic 'to-do lists' just to keep myself busy when i need to be busy, and have learned to lean a little bit on others for support. i'm definitely making progress, and i definitely have a long, long ways to go.
i think a lot of this recovery process, and becoming a survivor, is about acceptance. we do a lot of denial in our lives...from the initial denial that 'cancer won't happen to me' to the whole process of denying that this cancer could kill me, that i could have serious long term health issues from treatment, and my biggest denial...that cancer won't effect me negatively at some point.
now that i've started my journey as a survivor, i'm beginning to accept things as they are. i had cancer, i will live with uncertainty for the rest of my life, i had some pretty hardcore treatment, and i have some pretty serious emotional scars. i'm also learning to accept that it's not what has happened to you, or will happen to you, but how you handle it. we can't change the hand we're dealt, but we can control how we play it. it's about taking ownership of the things we do well, and the things that we struggle with. it's about facing our difficulties, looking them right in the eye and developing ways to overcome them...or at least to live civilly with them. it's about taking steps forward, despite fears telling us to stand still. and, it's about accepting that who we are now is different than we've ever been before...and embracing the new person we have become.
my biggest struggle has been planning for the future. i've realized that for the past year, i've been at a stand still. i wasn't planning for anything except how i'd get through each two week increment between treatments, or to the next appointment, scan, test, etc. i really didn't think beyond the end of treatment...it was as if surviving cancer was the only thing i was living for. but, that's what i needed to do...i needed every ounce of my emotional and mental focus to be on getting through. so, i reached that goal...i finished treatment. now, i push forward. but, there's a lingering 'what if' that nags at me every single day. as i plan to start my masters, every single step i take is tainted by a little worry...i purchased my first text book earlier this week and before i hit 'submit payment' i thought, shouldn't i wait until i have a clean scan? before i gave my notice at work, i wondered...what if my scan isn't clean? these thoughts don't stop me from pushing forward, but they create a significant pause. being a survivor means i'll have to deal with this forever...it will become less noticeable over time, but it will always be there. my challenge now is to hear the nagging, and make a concious choice to push forward despite any fear. as i said at the start of all of this...as soon as you stop living, cancer wins. i won't let that happen.
the textbook arrived yesterday. i threw out the receipt. i'm pushing forward.
June 30, 2010
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 13, 2010
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
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
this was the quote...
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.
May 30, 2010
the actual procedure was a piece of cake...i checked in to the day surgery unit, waited, and then got called back...on previous visits, i've met a nurse who takes me to the pre-op area to get completely undressed and meet with the nurse, doctor, anesthesiologists, and whoever else before the actual surgery. this time, the nurse told my mom that she was going to take me and i'd be back in fifteen minutes and ready to go home...and, to make it even better, i only changed from the waist up. it's a funny time in your life when you realize you are comparing the quality of doctor/hospital/office visits with how undressed you are...the less undressed you are, the better the appointment usually is. anyways, they prepped the area, injected a good deal of lidocane, then i saw the knife...and, for some reason, i had a moment of freaking out. i haven't had a surgical procedure since october, and i was quite out of it for all the previous ones...so something about knowing what was going to happen gave me a bit of hesitation. but, my surgeon is one of the most incredible doctors i've ever met, and she was quick to assure me i'd do just fine...and she continued to stand next to me and talk with me for the rest of the procedure (which was actually done by a resident). it was an odd experience to feel the cutting and tugging, and the surgeon explained that since i'm young and healthy, the tissue grew around the port really quickly. so, he cut and pulled for quite a while, and then gave one big tug and pulled it right out. apparently, throughout the procedure i was scrunching my nose and making faces the entire time. the poor resident was so worried that he was hurting me...but, for any of you who know me, you know that those faces really don't signify anything too unusual. then, i asked to see it...and the resident had it cleaned off for me so i could take a picture of it. and, that was that...adios, port.
right after i left the hospital, a funny thing happened.... usually, i have tried to cover my scars, not really wanting people to see them, ask about them, or whatever else people usually do. i left the hospital with a large dressing sticking out from my shirt, and i told my mom i wanted to stop at my apartment to change before we went out to lunch. i got home, came inside, and realized i didn't want to change. for the first time, i felt so proud of my scars, and my big, ugly bandage. it's not that i want people to stare or ask about them now...but, i don't feel any hesitation about telling my story. there was something seriously siginifcant about having my port removed that i hadn't expected...it made my physical self feel like a survivor instead of a patient. mentally and emotionally, i think i've been there for a while...but, i never realized how much the physical piece was really holding me back.
so, now i am totally free from the role of cancer patient...and learning the new forever role as a cancer survivor. it's an interesting transition, but one i'm trying to embrace with as much of an open mind as i did my previous role. there are many, many lessons to be learned from this chapter of life, but it's a whole new approach. life was totally turned upside down almost a year ago, and then i spiraled through an entirely different world of cancer...and now, on the other side, i have a perspective and purpose that i am so appreciative for. there will be lots of challenges, but i feel so in awe of the chance i've been given to learn...about myself, about life, and about empathy. i'm beyond excited to use the past year of my life to propel me into a new life of helping others and validating my own experience by 'paying it forward'.
the most common response when i tell people that i want to be involved in the cancer world...volunteering, pursuing a career in oncology social work, contributing to support groups, etc., is that i should 'take a break from cancer' and 'live my life'. perhaps my situation and approach are unique (in fact, i know they are)...but my desire to give back and help others in similar situations is not something i'm pushing myself to do because i feel i have to. it's because i genuinely want to...and, that's what i wish more people understood. just as my optimism towards cancer was genuine, so is my desire to help other cancer patients and their families. it may be unique, and it may be an exception to the rule...but, i know i'm ready. and, if it turns out that i'm not...there's only one way to learn that...through experience.
May 18, 2010
anyways, i'm now two and a half months since my last chemo treatment, and three weeks from my last radiation treatment. time has really flown! lots of you have asked how i'm feeling, or what lingering effects i have...luckily, i feel really good. my energy is definitely returning, and while i don't have excess energy, i'm finding that i'm enjoying longer days. i used to be tired by mid-afternoon, and could only manage to make and eat dinner before going to bed after work...now, i can make it through my work day just fine, and when i come home i have a few good hours before i'm in bed. the stomach pain i was having has totally gone away, and now i'm almost certain that it was the prilosec causing all the discomfort (even though the GI specialist didn't agree)...either way, i'm glad that's gone. my hair is definitely growing back...eyebrows are almost totally back to normal, and i have my first haircut since last summer this morning to even out whatever i had left with what's coming in. probably the worst lingering effect of treatment is my skin...i have had a rash on my feet since i finished chemo that won't go away, and i have patchy red, dry, itchy skin on my upper arms and back. but, if dry skin and a rash is the worst of it...that's fine. i know i was lucky with how well i handled treatment and side effects...the more i read on the forum, the more i realize that i really did sail through treatment.
the most exciting news is that i'm scheduled to have my port removed a week from friday! it will be so nice to get rid of it, as it really just is one more reminder of cancer (and a little bit uncomfortable). i'll always wear my scars proudly, but i don't need a scar with a bump under it for my pride. after that, if all goes well, it will be nothing cancer related until august when i will have my first post-treatment scan, and follow up visits with both my medical and radiation oncologists.
that's all for now...i'll do my best to keep up with this blog, and all of my many thoughts of being a cancer survivor. until then...fight on, warriors!
May 5, 2010
i don't know why, or how, i've been able to move past it so 'easily' (nothing about this has really been easy). perhaps my ability to maintain a pretty decent sense of normalcy throughout this has really braced me for my return to the real world. i feared the transition for some time, and then when i woke up this morning i realized it sort of just happened while i wasn't paying attention.
and, while i'm quite excited that i've had very little emotional trauma lately, there are a few things that have been a little more difficult.... for one, life seems a little more flat right now than it has over the last few months. i thought about this on my way to work the other day, trying to determine what about life was missing. i think what it boils down to is for the last ten months, i've woken up with a clear purpose - to fight cancer. there's a heroic attitude that goes with that...i woke up feeling proud, strong and determined. my goal was so clear to me, and that was the most important thing i would do with my day. now, i don't wake up every day and actively fight cancer...and, it sort of feels like i have less purpose. or, less urgent purpose. i know i have lots of purpose for being here...and more than i ever did before. it'll just be a new challenge to find that purpose and dig deep to uncover that same strength and will that i had when my task was to fight cancer. this one might not be thrown in my face in quite the same way, but i know i've been given the experience and insight to seek it out myself.
the other part of this that will be a little difficult is realizing who i am as a cancer survivor. it would be silly to think i'll go back to the same person i was pre-cancer...and, to be honest, i would never want to go back to being that person again. i know i am more mature, more insightful, grateful, kind, compassionate and honest than i ever was. i'm more genuine...i'm more me. cancer makes you vulnerable. you have to find out what you're really made of when you're faced with contemplating your own mortality, the reality of your relationships with others, your self image, your will to push forward and your breaking point. there are lots of times when you're fighting cancer where you don't care at all what others are thinking about you...and these are the best moments to get to know yourself. and, sometimes it really sucks to look at yourself in the most vulnerable moments...because, it's at those moments that you really can see the things you don't like about yourself. but, with an open mind, it's those moments of awareness that allow us to make positive changes.
so, what's my plan? to use the last ten months of my life to propel me forward with sincere purpose. i will work to maintain all the positive qualities i learned through my experience. i will never spend time doing things i just 'sort of' enjoy. i will focus my priorities on things that i really do value. i will work harder than i've ever worked to strengthen the bonds that i've made with people who stood by me through my journey through cancer. and, i will find purpose in every day, every moment, and every activity. just as i found optimism in cancer, i will find purpose in life after cancer...i just have to open my eyes, and my mind.
April 28, 2010
April 25, 2010
finished four more treatments this week, which brings the grand total to fourteen...three more to go. people ask me if i'm excited to be done. the answer is, of course, yes.... i'm so over getting up early every day, driving to radiation, changing into a johnny, getting radiation, changing again, and then going to work for a full day. and, i'm ready to really move past cancer. but, it's not nearly the same excitement as it was when i was nearing the end of chemo. radiation is 'easy' in comparison to the physical brutality of chemo. i know that radiation will bite me harder twenty years down the road...but, it's really a piece of cake in comparison to the six months before it. and, i quite enjoy seeing my radiation therapists every morning - they are some of the greatest people, ever, and they make the experience bearable, if not a little pleasant. so, am i excited? yes...but aside from normalcy and a few extra hours of sleep, there won't be too much of a change.
as for side effects, i suppose you could say things are becoming more apparent, but no where near unbearable. the worst is the fatigue...i'm really, really tired. but, i take into consideration that i'm working full time and waking up real early every day. so, yes, i'm extra tired...but, i can still carry on with most things. my throat really hasn't changed. it still doesn't hurt, although sometimes it's a little uncomfortable to swallow. i notice it most first thing in the morning, and it fades throughout the day. it hasn't stopped me from eating anything, but i have added a bit of ice cream some nights when it's a little irritated. also, you can now see a faint outline of my radiation field on my chest. it's like the most mild sunburn, and it really doesn't hurt at all...and, most people don't see it until i point it out.
that's about it. keep your fingers crossed that any cancer cells that escaped the chemo have been destroyed by the radiation, and that in just three days, i won't have to say 'cancer treatment' ever again when people ask what my plans for the day are.
April 18, 2010
again, the highlight of all this is the people. the three radiation therapists on my machine (and another one who rotates in every now and then) are absolutely incredible. they make having to get up early every day and drive to a cancer center totally bearable. in fact, i think more about what the question of the day will be on my drive there than the fact that i'm still getting treatment for cancer. i owe them an endless appreciation.
also, ran into my radiation oncologist this week as i was heading in for a treatment. i haven't seen him since we did my planning (the doctors rotate sites, and he hasn't been there on my doctor day), and seeing him was just the burst of optimism i needed. he gave me a big hug, asked me how i was feeling, and then told me how lucky he was to have me as his patient. he's one of my favorite people that i've met in this cancer experience...and i've met lots of people.
and, lastly, i've made a friend...he gets treatment right before me on the other machine, and we pass each other every day. he's always been friendly and waved, but earlier this week we started saying 'hi' to one another, and recently we've stopped for a quick chat. he only has four treatments left, and i have seven...so, i'll be sad to not run into him - but, i'm excited that he'll be done. and i feel lucky to have met him...he's definitely been a ray of sunshine every morning.
so, i've got one seven more to go. no treatment tomorrow because of patriots day, so four this week, and then the last three next week. it's hard to believe at that point i'll actually be done with all my treatments. it's been nine months since this all started, and i'm so ready to be done and over it for good. and, i know i've said this a lot...but, if it weren't for the people, i wouldn't be able to do it. it's the energy and spirit of those who i interact with at every appointment, treatment and in every waiting room that have kept me going.... if only everyone knew what a difference just a simple smile could make in someone elses day.
April 14, 2010
i don't want anyone to think i'm saying that this is by any means easy to do...but, however hard it is, it's still a choice. it's a choice whether or not we wake up every day and choose to face it with hopefulness and optimism or fear and resentment. and, it's in that moment we make that decision that the day begins.
that said, there are many things, especially with cancer, that get thrown into our days and steer us one way or another...and, our attitude usually follows. if your day starts off with a negative attitude, then there's really no place to go from that point but into a further state of negativity. not only does this make the day - the day that's not going well - seem to drag on forever, but it affects the quality of life. on the other hand, if you start off the day with an attitude of positivity, then you're better poised to face each challenge that's thrown your way - kind of like having reserves of energy, when you use a little, you still have some to keep you carrying on.... and, sometimes, it's your ability to simply carry on that makes all the difference.
of course, my statements are based on nothing more than my own experience and observations.... on the days that i've woken up feeling sad, scared and upset, i've had a really tough time clawing through the day - let alone recovering any optimism. but, on the days that i've woken up and reminded myself that every day i simply wake up is a day to be excited for - i've been able to carry through with a strength and outlook i didn't know i had. it's just that one moment, that quick decision to wake up and choose my attitude - the one thing i really have control over - that has made all the difference.
so, if i could offer one piece of advice to fellow cancer warriors, friends, family, and anyone else who's reading this...it would be to wake up every day and make a concious decision to face the day with optimism. none of us are promised any of these days we're living, so whether or not we have cancer, we ought to be so grateful to simply wake up. and, i know this isn't easy. i get it...i've had really, really tough days, and tough circumstances. i've had to make really difficult decisions, endure really difficult treatments, and live with a really difficult reality - cancer. and, each of those things has torn me down a little bit. i certainley haven't finished each day with such tremendous optimism...in fact, i've ended lots of days in fear and sadness. but, that's not the point...the point is that i've made a challenge to myself to go to sleep, and wake up in a new day. and to not just say that i'm in a new day...but to live it. sure, the same reality follows us day to day...just choosing to start the day with a fresh attitude doesn't change the fact that i had cancer, or that i had to go to treatment - those things are still very real. but, the realities of life have nothing on our choice of attitude...
...and as scarlett o'hara said, "after all, tomorrow is another day".
April 9, 2010
two weeks ago, i had what they call my radiation 'mapping' appointment. they have a simulation room, that looks similar to the treatment rooms, but instead of a radiation machine, there's a CT scanner. two very nice radiation therapists brought me in and placed me on the table, lined me up with some red lasers coming from the ceiling, and then made notes about what position i was in (they refer to all these things in numbers and stations...i really had no idea what they were talking about). then, they told me that i'd be having my CT scan...and i went through the scanner just like i have with every other CT scan. then they came out and told me to wait a little while so the doctor could 'do his thing', and it was about another ten minutes until they came back. they got all official again, discussing where i was on the table...then, they told me it was time to get my tattoos. some people think i'm joking when i explain this. yes, they are tattoos...permanent ink marks in my skin. i have three tiny black dots down the center of my chest that they use to line me up in the same exact position every day for all seventeen treatments.
on monday i started radiation...it was a lot of anticipation for what really turned out to be a non-event. i expected some terrible, painful, scary experience...and, when they came back into the room to tell me it was over, i thought something had gone wrong or they needed to re-position me.... i didn't feel a thing, i couldn't actually tell when i was getting radiated, and it took less than three minutes for the whole treatment. so, it really wasn't too terrible...and, the radiation therapists (the nurses of radiation) who do my treatments are so wonderful.
my treatments go something like this.... check in at the front desk, which lets the radiation therapists and computers know i'm there. this, in turn, prompts the computer to pull up my program so that the machine can be set for my treatment. then, i go to the 'gowned waiting area', which is just as glamorous as it sounds. i change from the waist up into a hospital johnny and robe. this is where it gets awkward, because i get treatment at the same time as four old men...and we all sit in the waiting room together...half naked. it usually doesn't take long before the radiation therapists come to get me, and bring me back into the treatment room. the room is large, with the radiation machine right in the middle. each person has a different set up...mine is a cushion for my head, and then a cushion under my knees, which is already set up on the table when i go in (i know it's different because they change it right after me, and the next person has different 'props'). i lay down on my back, they give me a ring to hold so that my hands are on my stomach, and then they use a band to hold my feet together. they move the table around, move me, turn the lights on and off to make sure my tattoos are lined up with the lasers projecting from the walls, and then one of them says 'ninety-four' while another one confirms the position. i asked what this was about on my third day, and was told it's the distance from the source to my skin...which is how the dosemitrists have calculated the correct dose...ninety four centimeters in my case. then, they turn the lights back on, turn the radio up and leave the room. i get treated from either the front or back first, and then the machine moves around to the other side and treats me again. i can only hear a small click, a beep, and a little whirring noise when i'm being treated...which is about twenty seconds on each side. then, they come back and that's it!
as for side effects...i can expect to be extremely fatigued as we go on, i'll have a sore throat, a little sun burn, and be a little sore. but, nothing yet...i feel like i got punched in the chest, but it's only sore to the touch. and, i'm exhausted, but i think that's because i have treatment early every day, and then go to work full time. i don't feel anything during the treatment itself...it's just like having an x-ray.
hopefully this helps give you an idea of what radiation is like. so far, so good.... the silver lining to this, as usual, is the people. they're wonderful. our thing is now 'question of the day'...this started with me asking real questions about radiation, but now is just a fun little routine. today was trivia friday. who knows what monday will bring, but i've got them to look forward to. seriously, thank goodness for these people...without them, cancer would really suck.
March 31, 2010
Ladies and Gentlemen of the class of ’99
If I could offer you only one tip for the future, sunscreen would be
it. The long term benefits of sunscreen have been proved by
scientists whereas the rest of my advice has no basis more reliable
than my own meandering
experience…I will dispense this advice now.
Enjoy the power and beauty of your youth; oh nevermind; you will not
understand the power and beauty of your youth until they have faded.
But trust me, in 20 years you’ll look back at photos of yourself and
recall in a way you can’t grasp now how much possibility lay before
you and how fabulous you really looked….You’re not as fat as you
Don’t worry about the future; or worry, but know that worrying is as
effective as trying to solve an algebra equation by chewing
bubblegum. The real troubles in your life are apt to be things that
never crossed your worried mind; the kind that blindside you at 4pm
on some idle Tuesday.
Do one thing everyday that scares you
Don’t be reckless with other people’s hearts, don’t put up with
people who are reckless with yours.
Don’t waste your time on jealousy; sometimes you’re ahead, sometimes
you’re behind…the race is long, and in the end, it’s only with
Remember the compliments you receive, forget the insults; if you
succeed in doing this, tell me how.
Keep your old love letters, throw away your old bank statements.
Don’t feel guilty if you don’t know what you want to do with your
life…the most interesting people I know didn’t know at 22 what they
wanted to do with their lives, some of the most interesting 40 year
olds I know still don’t.
Get plenty of calcium.
Be kind to your knees, you’ll miss them when they’re gone.
Maybe you’ll marry, maybe you won’t, maybe you’ll have children,maybe
you won’t, maybe you’ll divorce at 40, maybe you’ll dance the funky
chicken on your 75th wedding anniversary…what ever you do, don’t
congratulate yourself too much or berate yourself either – your
choices are half chance, so are everybody else’s. Enjoy your body,
use it every way you can…don’t be afraid of it, or what other people
think of it, it’s the greatest instrument you’ll ever
Dance…even if you have nowhere to do it but in your own living room.
Read the directions, even if you don’t follow them.
Do NOT read beauty magazines, they will only make you feel ugly.
Get to know your parents, you never know when they’ll be gone for good.
Be nice to your siblings; they are the best link to your past and the
people most likely to stick with you in the future.
Understand that friends come and go,but for the precious few you
should hold on. Work hard to bridge the gaps in geography and
lifestyle because the older you get, the more you need the people you
knew when you were young.
Live in New York City once, but leave before it makes you hard; live
in Northern California once, but leave before it makes you soft.
Accept certain inalienable truths, prices will rise, politicians will
philander, you too will get old, and when you do you’ll fantasize
that when you were young prices were reasonable, politicians were
noble and children respected their elders.
Respect your elders.
Don’t expect anyone else to support you. Maybe you have a trust fund,
maybe you have a wealthy spouse; but you never know when either one
might run out.
Don’t mess too much with your hair, or by the time you're 40, it will
Be careful whose advice you buy, but, be patient with those who
supply it. Advice is a form of nostalgia, dispensing it is a way of
fishing the past from the disposal, wiping it off, painting over the
ugly parts and recycling it for more than
But trust me on the sunscreen…
March 29, 2010
it's not that i have excessive anxiety now, and i've had doctors, nurses, a social worker, and fellow cancer warriors tell me it's 'normal'. then why does it feel so far from 'normal'? i've thought a lot about this lately. i constantly feel guilty for expressing my anxiety, or my fear, or my bad moods...and, i think it's because i'm just not used to it. and when you have cancer, you become the focus of a lot of attention...which creates even more pressure to always be positive and optimistic, because when you trip up, everyone sees it...and no one knows how to react. and, i had unrealistic expectations that everything would go back to the way it was before cancer. there are just so many factors that play into this whole business of figuring out the 'new normal'. and each one complicates things a little bit more...
..and, i wonder why i can't allow myself to accept that i'll have anxiety, and just give myself a break. i just finished six months of having chemicals pumped into my veins, and have just begun the month long journey through radiation...nevermind the fact that i now have to deal with all that comes with being a cancer survivor. i should be allowed to have anxiety...no one, let alone someone in their twenties, should be expected to have no anxiety when facing things like this. in my logical mind, i get it...it's in my emotional mind that i don't...
so, what's next? i refuse to complain about a problem and not even try to do anything about it...which means i need a plan.... for starters, i will live in my new perspective - i've just gone through something pretty traumatizing, and having anxiety, fear and other emotions about it doesn't mean there's anything wrong with me - i will do my best to remind myself of this every time i feel guilty or like i'm overreacting. i will take time to slow down when i need it - and i won't feel bad about it. i will lean on others more for support. i will assume i am forever cancer free, unless someone tells me otherwise. i will dedicate more time to practicing mindfulness. and, i will realize that all of these things won't happen overnight...it's all a process, a journey into the 'new normal'...
March 23, 2010
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 18, 2010
March 17, 2010
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
...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
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!