there is optimism in cancer

the 'difficult patient'

2011-10-23T16:03:00.006-04:00

as those of you who have followed this blog know, in august i started my clinical internship in inpatient oncology. while i've been dabbling in the outpatient setting, this has been my first true immersion in the fast paced, multi-disciplinary medical setting that is inpatient work. and, since the first day, something has really stood out...that there seems to be a troubling habit of using the phrase 'difficult patient'. as a social work intern, i have the honor and privilege of being referred to most of those 'difficult patients'...and, almost always, they are my absolute favorite patients. while i could tell you all of the reasons these individuals are particularly endearing, the point i want to make is that there really is no such thing as a 'difficult patient', just difficult situations.

there are many reasons patients develop 'difficult' behaviors...fear, lack of understanding, exhaustion, fear, a traumatic history, and in the case of cancer patients...fear. imagine, for a moment (and if you've had cancer, this will be an easy exercise), being brought to the hospital suspecting you have a cyst only to go into surgery and find out your body is covered with tumors from your metastatic pancreatic cancer and you only have six months to live. or, being driven six hours by ambulance from a rural town to a city hospital, with no family or friends (and no way to contact them), being told you have a cancerous tumor and need to make a decision to consent to surgery, even though your intellectual capacity doesn't allow you to fully understand what's happening to you. might you be frightened? want more time to talk to your doctor and understand? want the whole world to slow down while you come to terms with what you're being told? me too.

let's face it...being diagnosed with cancer (or any other illness, i'm sure) is traumatic, and none of us are truly prepared to deal with it. some people are fortunate to have resources to utilize during these times. personally, as a patient, i had the luxury of time (my diagnosis took almost two months), supportive doctors who spent all the time with me i needed, the support of family and friends, and a graduate level education to help me understand and engage in decision making. i know these things, especially in combination, are uncommon. take away any, or all, of these things and i, too, may have been a 'difficult patient' (and my doctors may argue i was...i did refuse necessary surgery for a good couple weeks). and, let me assure you, i did everything in my power to be a 'good patient' - sometimes at the cost of not asking the questions i had, expressing my hesitations, or telling people how crappy i really did feel (i had the 'easy' chemo, and the 'good cancer' after all) for fear of being seen in any negative light.

when we are able to put ourselves in these patients' shoes for just a moment, we may be able to empathize enough to hold short of telling our colleagues that the patient in whatever room is 'difficult'. i know that medical professionals are overworked, and trying in their own ways to survive the really intense nature of their work (perhaps especially in oncology), often by using humor or even detaching completely from patients. i get it, we all need to get through the day, and i'm not going to pretend i'm never guilty of getting really frustrated with a patient and not being able to give it everything i've got. all i'm saying is that, perhaps, we all owe it to our patients to change our language just a bit. we don't even have to eradicate the word, just apply it to what it really is...a difficult situation, not a difficult patient.

because one day, we too might just find ourselves in the midst of a diagnosis, totally overwhelmed with fear, wishing time would stop and decisions would come easy...and at that moment, i bet we would appreciate if we're not treated as difficult patients, but wonderful people in a very difficult situation.

the myth of the 'good cancer'

2011-06-13T10:04:00.002-04:00

i hear this all the time...'oh, you had hodgkin's? that's the good cancer', or 'that's a good cancer to have if you have to get cancer'. sure, hodgkin's is very treatable, and in many cases it's curable...but does that make it a 'good cancer'? if you ask me, there is no good cancer.

how do we define 'good cancer'? by those that can be cured? easily treated? removed surgically? i can only speak from my own experience, and draw from the experiences of warriors and survivors i've worked with - but, i'd say that no cancer is good. in my case, chasing a cure meant seven months of chemotherapy treatments every other week followed by three and a half weeks of daily radiation. i lost my hair, i got really sick, i chose to have treatments at twenty four that will certainley impact my life in the long term - if i'm lucky enough to get there. and, sure, i did well...but i personally know people who haven't responded to treatment and gone on to a stem cell transplant, and i also know people who haven't responded to the transplant and are living from clinical trial to clinical trial...and those who have passed away. so, no, i don't think this is a good cancer...not even a little bit.

and what about the emotional aspect? forget the physical curability of the disease. i don't know anyone who has been diagnosed with cancer (good cancer or bad cancer) who doesn't struggle with the emotional burden of the illness. the 'what if' every time we have an ache, pain or even the most mild night sweat. the constant nagging in the back of our minds for the rest of our life that we won't live forever. once you face cancer, you face death...and you can't come back from that, you're never, ever the same.

really, i think what gets forgotten in this myth of the 'good cancers' are the patients. in the day to day oncology world it's easy to think that someone with a curable cancer is better off than someone with a terminal, metastatic cancer. and, sure, in terms of prognosis there's a definite difference...but who's to say that either patient is 'better off'? i have a brilliant professor and mentor who said 'it's not the event, it's the experience'...meaning, the way each individual experiences a traumatic event has nothing to do with the event itself, but it has everything to do with how that individual uniquely experiences the event. it's our responsibility as professionals, friends, caregivers and fellow survivors to treat each person as an individual. let that individual tell you how they feel about their situation, and don't let the diagnosis or the stage of their cancer on their chart determine how you perceive their situation.

telling someone they have a 'good cancer' effectively invalidates their entire experience. you leave that person thinking 'well if i have a 'good cancer', my fear must be irrational' or 'they think i'm making this up', or 'i should be grateful'. none of those things are true. our experiences are honest, and are to be validated for what they are. try to remember that regardless of what our perception is from the outside, each individual with a cancer diagnosis is facing one of their worst nightmares (if not their worst nightmare). each situation is a trauma, and each warrior deserves to be validated and allowed to feel whatever they are feeling.

but, always have hope...if someone has a curable cancer, don't be afraid to use the word cure. don't be afraid to tell them you're hopeful. but, don't let that distract you from recognizing and validating the terrible, ugly and scary experience that the individual in front of you is having. and, please, don't ever tell anyone they have the 'good cancer' again.

transition...

2011-06-10T09:37:00.003-04:00

as most of you who read this blog know, i started my master's in social work shortly following the end of my treatment. now being over a year out from the end of treatment and having a full year of my program under my belt i'm experiencing an identity shift. my cancer survivor identity is no longer my most salient identity, instead, it's slowing becoming integrated with my social work identity.... and, as i'm focusing all my efforts on oncology social work, it feels like a wonderful balance. i will never, ever let my survivor identity fade, but it's important to me moving forward to also allow my other identities their time in the spotlight. my survivor identity gives me motivation, drive, energy and a love and appreciation for life that i've never had. it makes me refuse to settle for anything...it allows me to brush off the small things in a way i never could...and, it gives me and my work purpose.

but, i think my shift in identity is why i've had trouble writing here. my survivor identity is now integrated into a new chapter in my life - one where cancer isn't the main event (and i hope it stays that way). but, writing here is important for me...and i like to think it's important for others. i saw a brilliant speaker who was also a social worker/cancer survivor and she described herself as having a 'pathological need to help others'...ah, perfect, i'm not alone. this blog is important and therapeutic for me, but my life isn't about me...it's about giving to others and learning in the process.

so, while i will continue to post here...i will focus my blog now on short little bits about life as a survivor, social worker and tireless advocate for everyone else touched by cancer. i'm intentionally not creating a new blog because i think it's important to integrate my personal history as a cancer warrior with my future. i don't hide it in practice, and i won't hide it here. it's part of who i am, and i'm darn proud of it. that said, when i have medical updates or anything comes up in my personal journey i will make sure i let you all know.

i also need to say 'thank you' to everyone who has read this blog, who will read this blog, and those of you who leave comments or send messages. there is nothing more rewarding than knowing that by writing about my own experience i've given something to someone else. you are all wonderful and i look forward to continuing to share my new and exciting journey with you...whatever that ends up looking like.

life after treatment...

2011-04-29T13:57:00.004-04:00

yesterday was the one year anniversary of the end of treatment, which is a big deal in the cancer world. i intended, of course, to write this post yesterday...but nine hours of class put a hold on it until today.

during diagnosis and treatment i remember thinking there was no life after treatment, that i would never have any normalcy in my life, and that i wouldn't be able to move on. i became so enmeshed in my cancer identity that i didn't know what else there was. and then i reached that traumatic and exciting day when i finished treatment. exciting for obvious reasons, but traumatic because i lost the safety of active treatment and seeing a doctor every week. so, what is life like after treatment, you ask? here's what it has been like for me....

i won't sugar coat it, because i made a pledge to be honest here...those first few months were absolutely brutal. aside from the physical recovery, which in my case included life limiting fatigue, itchy skin, and a touch of shingles...there's the mental and emotional recovery. i was sad, i was anxious, i missed my doctors and nurses, i missed the attention, i missed the reassurance that i was fine, i hated people who pretended i was 'back to my old self' and acted like nothing ever happened (still hate this), i was afraid to plan for anything in the future - even a month away, i didn't see myself when i looked in the mirror, i wanted to ditch my wig but i hated the way i looked without it, i would get frustrated and cry sometimes because the recovery was so slow, and i just wanted to feel whole again. no one prepares you for this...the whole world expects you to be happy that you're done and move on. but, the moving on takes time. patience is probably the hardest thing during this time because we all just want to be 'normal' again...but, it's a process...and it gets better.

so, so much better. now, a year out of treatment cancer isn't always the first thing on my mind. anxiety doesn't control me. i still have energy at ten o'clock at night. i think about the future every single day with excitement (and maybe a tiny twinge of fear that continues to fade). when i look in the mirror i see myself. i smile when i take a deep, unrestricted breath. i focus my health on exercise and eating well instead of surviving. i feel more whole than i've felt in a long time.

but...one thing that has become more challenging is to remember my perspective. when i was going through diagnosis and treatment, i promised myself i would never, ever lose the perspective that i gained from the experience...that every day we wake up is a reason to be grateful, that life is a journey, that there's nothing that can compare to beating cancer, and that i have gotten so much more than what was taken from me. and it's not that i've lost the perspective, but life can get crazy, and things can get overwhelming, and i have to make a conscious effort to pause and reflect when i find myself losing that perspective....

...like the times when grad school gets overwhelming and i let everyone's stress get to me...i remind myself that the worst thing that can happen is i don't get my degree...life wouldn't end (as some of my classmates seem to believe)...

...or the times when i complain about my hair, or get all worked up about how imperfect by body is...it's the reminder that i have hair, and that my body is healthy and that's all that matters...

...or the moments when i realize i'm just going through the motions...and i remind myself that life is a journey, and we're responsible for making each moment what it is.

i suppose that it's all part of the process...and the beauty is somewhere in the balance of perspective and tolerance. i imagine somewhere along this path i'll find that perfect balance, but for now, i continue to push forward and to take the experience for what it is...appreciating that all of this has become part of my journey, and there's meaning in every bit of it.

(and a full head of hair...check it out)

'may i accept the journey for what it is, not what i think it should be'

2011-04-26T09:27:00.005-04:00

as the days in april wind down, i realize i owe an update here. i intended to write one after my visit to dana farber last month, but i never really got around to it. all went well - blood work was perfect, exam was fine, etc. i feel so grateful, but for some reason this visit just didn't put my mind at ease. to be honest, i've been struggling lately - to keep my mind off of the 'what ifs' and to find the same confidence i had before. i know this is part of the normal struggle, but it makes me feel weak. i've tried to decide where i want this blog to go now that i'm not updating every other week with my treatments, and when i posted honestly about how hard this all really is, there was an overwhelming response of those of you who have experienced it yourselves. so, i will continue to share my experiences, and be more honest than i've ever been....

i've done a lot of reflecting on why i'm having such a hard time lately. maybe it's because i've been doing a lot of planning for the future, and i still have that moment of pause when i think 'what if?'. those moments are much less powerful now, but it's still there. or maybe it's because i'm always surrounded by cancer...in the support group i facilitate, in the work i'm doing professionally, and in the online forum i'm a part of. or, maybe it's because i'll be a year out of treatment this thursday - a huge milestone for us hodge warriors. or, maybe because i'm simply human. a human who's experienced something huge, life changing, and powerful.

it's ironic, because i spend most of my time telling other cancer survivors that this is normal. i say it in my support group, i say it in my work, and i say it in almost every paper i write for school. but it's really, really hard to tell it to myself. to feel that this is normal, and that it will all pass, and you know what? i'll probably be fine. it's just been so permeating lately, more so than usual...and that's distracting.

recently in my professional/student role i have been doing a lot of work on detecting psychosocial distress in cancer survivors (anyone who has been diagnosed). the topic came up about those who are harder to pick up because they minimize - they tend to say everything is just fine when it really isn't. they take on a heroic role because they feel as though they have to keep everyone going. somewhere in the middle of this discussion, i realized i knew a whole lot about these people without having read much on them in the literature. then, i paused. i'm talking about myself. i'm talking about all of us who say we're fine because we're afraid of letting those who love us know our fear...because we're afraid if we say it out loud it will define us...afraid of the stigma of needing help...afraid of being weak. such a pivotal moment for me to be able to step back and realize where i'm at, what i still need to work on for myself, and how i need to give myself a break....

having cancer has brought such a richness to my life, to my relationships and to my career. i feel lucky to be alive every single day. i'm so passionate about the work i'm doing that it never, ever feels like 'work'. i've reached the point where i no longer question whether or not i'm capable of doing work with the oncology world - i know i am. having my moments of being sad and scared only make me more connected, more aware and more dedicated to help others through this. but, i'm going to have scary days, and sad days. mostly, though, i have good days - excellent days, even. the best days of my life.

the other day in class we had to write mantras for a mindfulness exercise. i wrote 'may i accept the journey for what it is, not what i think it should be.' i have a lot more work left to do, but i know that realization is the first step to acceptance. so, onward with the journey...

milestones.

2011-03-09T11:46:00.005-05:00

exactly one year ago today i sat in the treatment room and received my last infusion, marking the end of a long, treacherous journey through the world of chemo. i was beaten down mentally and physically and couldn't even begin to envision what a year out from that day would feel like. today, just getting out of bed reminds me how wonderful life is, and how fortunate i am to be here to live it.

and, i never imagined how emotional this day would be. i've been excited for it to come, because now i'm a year out of chemo...which is a huge milestone. the end of april will be the end of all of my treatments, which is a really, really big deal...but this is a huge day, too. but really what keeps getting me all choked up is thinking about the love and support i was surrounded with through the toughest time of my life, especially the three most important people in my world. so, this one is for them...

dad...you are the best treatment buddy i could have ever, ever asked for. you faithfully came to every single appointment, scan, procedure and treatment i asked you to. and, you made it bearable to sit through three and a half hours of drugs being pumped into me. i remember looking up from my first biopsy and seeing you behind the glass with the doctor. you cheered me on when i was having my lung capacity tested. you made inappropriate jokes about marketing new products to cancer patients, and making me laugh uncontrollably when i just wanted to cry because i felt so sick. i remember the sheer joy on your face anytime we heard good news, and how many times you would repeat it just to hear it...which is exactly what i needed you to do. and i remember how terrified you were every single time you had to face any of it...but you did it because i needed you to, and i couldn't have done it without you.

mum...there has never been anyone who i'd rather take care of me when i'm sick. i counted on you after every treatment to come check on me every hour, to be a phone call away when you were right downstairs but i didn't have the strength to bed out of bed, and to put up with my all over the place emotions. i counted on you to take me to the hospital for my surgeries, and to take me to get coffee and lunch after. i counted on you to take me shopping to get my mind off everything else. i counted on you to come running every time i yelled your name, even if i just wanted you to sit with me. you're the best mother and friend i could have ever asked for...and no one makes toast like you do.

luke...there's something special about someone who asks someone out knowing they're in the middle of cancer treatment. and then someone who wants to spend the days after treatment with that person because 'it's about the bad days, too'. and, someone who can stand by another person through the good, bad, and the ugly. you came into my life at a time when i was struggling to make sense of everything, where i was having a hard time pushing forward, and where i just needed something to make it all worth it. you're my hero...you made me excited for every day, you gave me a reason to keep smiling, and you filled a hole in my life that i didn't even know existed. you are the best thing that's ever happened to me and you give my life a sense of purpose that makes it wonderful to just be alive.

...there are so many things to be grateful for today, for my health, my progress and just for this day. i'm so blessed, and these words don't even do it justice.

total, unfiltered honesty...

2011-01-16T11:41:00.002-05:00

the start of a new year is a huge milestone. this could be the first year in two years that i don't have cancer treatment. this is going to be the year i get married. this year is going to be a lot of wonderful things. this is also the year that i'm really going to start pushing myself to use my cancer experience for the better. i'll be starting a several week long support group facilitator training in a couple weeks, i'm going to join the buddy program, i've been asked to speak at the hospital ethics grand rounds, and i'm going to begin my oncology placement next fall, which i hope will be the start of a wonderful career.

there is, however, a lot of work i need to do personally in order to be able to give fully of myself. i know that one of my biggest weaknesses is not being totally honest when things aren't positive. i have absolutely no trouble being positive with people, but i hold back from sharing frustrations, dissatisfaction and my struggles. this came up in my field placement this semester and taught me a huge lesson professionally. but, as i have learned, just about everything we learn in our program can be applied to our lives. and, as much as i hate to admit it, i have totally belittled the amount of struggle i have faced with cancer. partly to protect others from feeling sorry for me, or from worrying...but partly because it's how i coped.

i'm so quick to tell other cancer warriors that they need to be honest about their struggles that i have forgotten to be honest about mine. so, i feel like i owe it to myself and to everyone else who has and will fight this battle to be honest. it may not be an inspirational or insightful post, but it's real, and it needs to be done...

cancer is a huge deal. hearing cancer is one of the most frightening things i have ever experienced, but it was nothing compared to what came after that. physically, cancer is the worst thing i could ever imagine. i know it's not the worst thing possible, but it totally sucks. i always said 'it could be worse'...and, yes, it could be, and i feel fortunate that it wasn't. but, really, it was absolutely terrible. there was the pain when i was recovering from the various procedures before being diagnosed. the kind of pain where you can't take a deep breath without severe pain, can't sleep, can't raise your arms over your head, can't get dressed and can't function completely. then there was the constant sickness for months on end...the kind of sickness that brought me to tears on several occasions because i knew i just had to wait it out. it's like eating something that makes you violently ill, and so you never eat it again. except, i didn't have the choice to not do it again...i had to do it twelve times. each time knowing that i would get sick, and i'd stay sick for at least three days. some days i would just cry because i knew i still had a day to go and i wanted nothing more than to not be miserable. and to add insult to injury, i was losing more of my hair each time, i was so tired i couldn't do anything, and i was having a really hard time remembering what it was like to feel normal.

but the physical struggles don't even compare to the emotional struggles. just wrapping your head around the idea that you have cancer, a disease that could kill you, in your mid-twenties (or at any age) is unimaginable. and that doesn't just fade. it doesn't matter how many times you're told you're doing well...once you've been hit with having to face your mortality, you're changed forever. there's all the 'why me', the survivor guilt, the fear of the unknown, and all of these things that just stay with you. while the rest of the world assumes that when you feel and look better physically that you carry on emotionally, they're wrong. sure, it might get a little easier to hide, and there may be more positive things happening in life to keep you smiling...but it still hurts, and it's challenging every single day. i still have moments where i'm ecstatic that i'm getting married in the fall...and then i stop and think 'what if my cancer comes back?', 'what if i have children some day and i can't be there to see them grow up?'. some of you who haven't experienced cancer are probably thinking 'you shouldn't focus on those things...you're doing well, you'll be fine'. that's the biggest challenge. those what ifs will always be there...it's not crazy for us to think about them all the time, in fact, it's totally normal for a cancer survivor to worry for the rest of their life about these things. it's all part of the process. but, it's emotionally draining to always have a nagging worry in the back of your mind. to live in a world where everyone expects you to be back to normal, and to be ecstatic about beating cancer. but, beating cancer is a long, long process. perhaps i've beat it physically, but every time i think about something scary, i realize i'm still fighting cancer on another level. it's coming to terms with the fact that i'll have to fight it for years...maybe for the rest of my life. and, that's alright. it is what it is, but i need to admit to myself that it's tough, that it's unlike anything i've ever dealt with before, and that it's valid.

and while all of this may sound overwhelmingly sad, it's not. cancer is, in a weird way, the best thing that's ever happened to me. it's made my entire being more real. i appreciate everything in this world more than i ever have, and i have such a depth in every aspect of my life now. but, the beauty in life doesn't come without a struggle. i confront cancer on a daily basis, and while the physical healing has been relatively easy...the emotional healing is much, much more difficult. and i certainly wasn't doing myself, or anyone else, any favors by saying 'oh, it's not actually that bad'...because, you know what? it was...and i owe it to every warrior out there to be totally honest. and not just about the wonderful parts of this journey...

snow, coffee, and an update...

2010-12-22T10:50:00.003-05:00

there are few things i love more than sitting around in the morning, drinking coffee and watching snow fall...it's just so peaceful, and a wonderful reminder of how beautiful the world is.

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!

lots to be thankful for.

2010-11-25T12:01:00.002-05:00

last year, i wrote a post of all the things i was thankful for (find it here). i was certainly in a different place last year, and to be able to look back just makes me realize how much more i have to be thankful for this year. so, in starting a new tradition, here's what i'm thankful for this year...

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 update.

2010-10-31T17:04:00.001-04:00

it's the last day of the month...so it's time for an update!

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.

trying to be where my feet are.

2010-09-30T20:26:00.003-04:00

holy moly! i can't believe it's been over a month since i wrote on here. and, truthfully, i have thought about it almost every day and felt guilty for not writing...but i'm just SO busy. and that's a very, very good thing.

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'.

re-building

2010-08-21T13:09:00.000-04:00

it seems that i'm slowly working through the high anxiety phase of life post-treatment, and entering a new phase...one where i get to take control and re-build my body, my mind and my life.

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.

cancer free!

2010-07-29T16:46:00.007-04:00

scan yesterday...
... and results show no evidence of disease...which means i'm officially cancer free!

a year ago...

2010-07-25T10:33:00.000-04:00

...my entire world changed. a year ago yesterday was the day i found out i had a large mass in my chest, and that i probably had cancer. i spent the weekend in fear, and going through what i imagine everyone does when you hear you probably have cancer. so, this year, i'm spending a lot of time this weekend reflecting. reflecting on how thankful i am to be on the 'other side', not to be in the same place i was last year, and for how far i've come...

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...

acceptance.

2010-07-22T08:29:00.003-04:00

i really do want to blog more...i say that a lot. but, somehow, i always end up here...about a month from my last blog post. and, really, i don't have a whole lot to report...which is a good thing. it means life has returned to a little bit of normalcy.

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.

things i wish i knew...

2010-06-30T20:19:00.005-04:00

i wish someone warned cancer patients that being a survivor is no easy role to fill. i mean, i know you read about it, but it's not like they actually prepare you for any of this stuff. i'm doing my best learning as i go, but a heads up would have been good. so, for all of you, i have created this list of things i wish i knew...

you will have a high when you're done treatment. that high will last a month or so, and then you'll have a startling awareness that you're living a 'normal' life. it's harder than one may think to adjust to not having a lot of emotional excitement from day to day. perhaps it is the emotional excitement of active treatment, scans and seeing a doctor every other week that distracts us from all the other emotions that we end up processing later. whatever it is, it's an odd feeling to not have that excitement, and it may leave you feeling pretty 'blah' until you adjust.

your hair will not grow back quickly. in fact, it may take a while before you start to see yourself as the person you were before. your hair looks different, you've got scars, tattoos, burns from radiation, weird rashes, maybe a port still, and if you're 'lucky' like me, you've gained some weight. not only has your whole internal self been dramatically changed, but you don't even look like the person you used to be. you'll probably notice it, and it'll probably be hard to handle. accepting you've become a whole new person is a difficult thing to do. just keep reminding yourself that you're a better, stronger and more beautiful person now. you're more you than you've ever been.

it's alright to need help. seriously? yea, i wish i knew that. i've never been good at asking for help, and have always been taught to suck it up and 'make it work'. during treatment it's much easier to ask for help because you're so clearly in the midst of something that everyone knows is really difficult. once you finish treatment, the obvious need for help isn't as, well, obvious. this one i'm really still working on...i need to give myself constant reminders that asking for help doesn't mean i'm needy or that i lack independence. in fact, being able to ask for help when i need it makes me more self sufficient and successful than not asking for help and letting myself spiral into anxiety and stress.

you just dealt with something really significant. i have a tendency to minimize everything...how bad i felt during treatment, how scared i was, how frustrated i get with my body, the amount of stress i'm left with, and how huge it really is to face your own mortality. i've minimized things in order to get myself and others through this...but, really, i haven't done anyone much of a service here. give yourself some serious credit...we all know a cancer diagnosis is one of the most feared things in our world, and you just went through it. once you start to accept how huge it is, you'll be able to normalize your ups and downs...and being able to identify your experience as 'normal' at this point is so therapeutic.

you're not alone. there are 13 million survivors, according to the latest estimates. that's a lot. that means a lot of people have walked in your shoes before you. connect with someone who's 'ahead' of you in their survivorship and let them help guide you through the process. without my 'survivor mentors' i'd be totally lost. just to hear that what i'm experiencing at the moment is normal makes all the difference. and, theres a lot to be said for having those friends who just 'get it'. so, reach out. and if you don't know how to connect with someone, i'll help you.

hopefully this helps someone who's about to enter the crazy world of survivorship. that's not to say that this side of cancer isn't wonderful. it is. it totally is. to be able to look back and realize that i survived a cancer diagnosis, eight months of treatment, and came out in one piece is an amazing accomplishment. and my quality of life is certainly better now...i have a deeper appreciation for every single day, breath, relationship and interaction in my days. but, that doesn't mean that there aren't daily challenges that come along with being a survivor...and that's what i'm hoping to bring more awareness to. i think it's that acceptance of our difficulties as survivors as being a normal part of this journey will help make them a whole lot easier to handle.

and, if it's at all helpful to you, pay it forward and start your own list of things you wish you knew and pass it on to someone who's about to be a survivor, too. one bit of advice at a time, we can make the world a better place for every cancer survivor...and we all know there are many more to come.

new challenges...the journey continues.

2010-06-13T10:44:00.001-04:00

cancer presents many challenges, but, what takes a while to realize is that they can't possibly all be dealt with at the same time. when i was diagnosed, i had an initial shock of emotion which caused me to shut down while i tried to process it all. that was over a weekend (first found out i had cancer on a friday)...starting the following monday, i was thrown into warrior mode - which left no time to process emotions. i was so busy trying to get through all the tests and the daily uncertainty, that it was all i could do to just get through it. then, i was finally diagnosed after two long months, and a week later i started treatment. from that point forward, the physical challenge was at the forefront...and the sole focus was finding enough inner strength and will to keep pushing forward.

now, over three months out of chemo and over a month out of radiation the gravity of it all is finally catching up with me. it has become apparent to me that, in my own way of coping and trying to help others cope, i have minimized my experience quite a bit. i never wanted people to feel sorry for me or be afraid for me (and i still don't), so i kept telling people 'it's not so bad', or 'well, i have a really good prognosis' or 'my oncologist says i'm doing really well'. all of those things are true - sort of. i never felt overwhelmingly awful about the whole experience, and i do have a good prognosis, and i did do very well. but, i was given a diagnosis of a life threatening disease, and told that i had to go through physically brutal treatments for the better part of a year - treatments that will pose a serious threat to my health down the road, but are the only way to get me out of immediate danger. that's a huge risk to have to take...treatment can kill you, but it is the best chance you have to beat the cancer that will kill you if it's not treated. so, you go ahead with treatment without much thought because you don't really have any other choice. then, i had to actually physically endure the treatments...which really did suck - no matter how many times i said i was 'fine'. meanwhile, as i was battling through the physical piece, i was continuously confronted with hugely emotional appointments, scans, and discussions about prognosis - which is a really tough thing to confront, as it has everything to do with mortality.

so, what's the point of bringing all of this up again? well, i've recently hit a pretty hard wall. for a week or so i was feeling overly emotional, agitated and fearful. i had no idea what was going on...so, my mind went immediately to relapse. why? because that's the scariest thing i can imagine right now...and for a while, everything that doesn't 'feel' right is going to make me jump to the thought of relapse. i may not stay there long, and i probably won't be able to make a good case for it, but that's just the new normal. it wasn't until i talked to a good friend (and four year lymphoma survivor) that i realized that this rut i've been in is totally normal. she explained that once you can get past the physical battle, and come down from the high of 'finally living life after cancer', it's par for the course to experience a significant low. she also mentioned that it's at this point, where i'm out of immediate danger, that i have finally allowed every part of the emotional journey that i pushed aside, out of necessity, to emerge. and, that's fairly overwhelming.

it wasn't until my conversation with her that i was able to take a deep breath. it feels as though i was clearly processing some serious emotions, but i didn't know why i was sad, upset, frustrated, etc. so, in an effort to relieve the emotions, i was trying really hard to figure out the cause of it. that only added more anxiety, because i could come up with no reason...so i just kept going to relapse (really? yes...that is, apparently, the answer to all unsolved puzzles at this point in survivorship). with her help, i was able to identify that it was a 'normal' step in the journey of a cancer survivor...and, in the end, it may be a productive step (i don't want to keep these emotions suppressed forever). so, i was able to sit back and appreciate this challenge for what it is, and look at it as just another lesson in all of this.

now, in this clarity, i wanted to write about it here for a few reasons. first, and most importantly, because it wasn't until i had the insight of someone who went through it before me that i could identify what was happening. and being able to identify it, and have it normalized, made all the difference. so, my hope is that i can do that for someone else. also, i think it's important that i stop minimizing my experience and appreciate it for what it is...a huge, life changing event. i told my friend that i felt melodramatic when i told people how it was without minimizing it...she told me that i was, in a different way, being just as melodramatic by minimizing it. and, lastly, i think it's important that all of you who read this blog hear that it hasn't been easy, and as much as i've minimized my challenges throughout my journey, i should have always told it like it is.

it's amazing what a difference it makes to be able to see things as they are. i sometimes wish i had the insight to do that on my own, but the reality of it is that i can't. at least not all of the time...and, that lends itself well to reaching out to other survivors to help offer their perspective, one that they worked really hard to have. this experience, or phase of the journey, is also an excellent reminder that i've landed in a 'new normal', and all of these phases are part of the life of a cancer survivor. just as being a cancer patient wasn't easy, being a cancer survivor will certainly have it's challenges. i just hope that i can face each of them with the same strength and poise that i did as a patient. it was a lot easier when each goal was clear (get to the next treatment, get through it, get to the next one, etc...), but in this phase, i will have to make each challenge into an opportunity to grow and develop as a person, and a cancer survivor. to appreciate each phase in this experience for what it is, and to continue to look for the lessons to be learned. and, i have to appreciate that these challenges are just as big as those i faced during treatment...just different.

national cancer survivor day!

2010-06-06T10:38:00.004-04:00

today is national cancer survivor day, and i'm proud to be able to stand among the ever growing ranks of cancer survivors. it's a title that i'm very honored to wear, but not one that came easily...

it's been a long road...over the past year, i've had four chest x-rays, four CT scans, two PET/CT scans, two biopsies, four pulmonary function tests, one MUGA scan, one ECHO, a bone marrow biopsy, countless blood draws, twelve chemotherapy treatments, seventeen radiation treatments, and had a port put in and taken out. i've made three trips to dana farber in boston, countless trips to maine medical center, been in surgery twice, and had three minor procedures. i've gone from a medical team of two doctors to a team of eight doctors, a nurse practitioner, two nurses, a treatment team, and a handful of radiologists and pathologists who work behind the scenes.

...and today, on national cancer survivor day, i get to proudly wear my scars and radiation tattoos as a hard earned badge of honor. so, here's to those of you who have fought, are fighting or will fight...and here's to the hope that one day everyone who recieves a cancer diagnosis will also hear the word 'cure'.

what a difference a doctor makes

2010-06-02T10:03:00.004-04:00

i read an interesting post the other day that really struck a chord with me, and as we approach national cancer survivors day (sunday, june 6th), i think it's appropriate to write a post about the people who dedicate their lives to making sure that there continues to be such a day...doctors.

this was the quote...

You may not realize this (or you may have just forgotten), but we hang on every word you say. We take everything literally. We watch the expression on your face and the way your eyes move when you talk to us. You can make or break our spirit with a word or a look. We know you're very busy and that you are overworked, exhausted and probably w-a-y under-compensated, but I'm fighting for my life here. Please choose your words carefully, let the compassion that led you into medicine show in your eyes, and give me a hug or squeeze my hand now and then.

And whatever you do, don't ever be guilty of saying that you don't want to give a patient "false hope." There's no such thing. A miracle could be just around the corner. It's happened before, and it will happen again and again and again.

And it just might be tomorrow.

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.

de-ported!

2010-05-30T10:27:00.004-04:00

it's official...i had my port taken out! i probably was the most excited patient in the entire day surgery unit friday morning. in fact, i may have been the only excited patient...surgery isn't known for being fun or exciting. unless, of course, you're a cancer survivor having the device through which you received chemotherapy removed from your body. it's one of those hugely significant events that probably only makes sense to those of you who have been through it, but it's like being freed from life as a cancer patient, it marks the end of being actively in treatment, and it means that your oncologist doesn't really think you'll need it...which is the biggest vote of confidence in the world.

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.

did that really happen?

2010-05-18T09:21:00.003-04:00

i really do wake up most days and have a hard time believing that i actually had cancer, and i actually went through six months of chemo and three weeks of radiation. sure, i've got lots of little physical reminders, but life just kept moving through cancer treatment, and then the day it was over it was like it never even happened. i suppose that's a good thing, but i sometimes wonder if i've pushed aside lots of important things i should have dealt with and they'll come back one day and bite me. it's a hard thing to explain, but i almost feel as if i wasn't upset or sad enough.... that, however, is probably a product of our own assumptions. before cancer, i always imagined if i had it, that it would be the worst thing that ever happened to me, and i'd spend my life sad about it. i think this is how we view cancer patients and survivors in our society...but, it seems further and further from the truth every day that i live this experience.

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!

finding purpose.

2010-05-05T08:28:00.004-04:00

i woke up this morning, and had a totally surreal realization...i survived cancer. that probably sounds really ridiculous to all of you, but that's exactly how it felt. almost ten months ago, i was told i had a large mass in my chest...and then i was thrown into surgeries, scans, chemo, radiation, appointments, anxiety, fear, etc. then, i woke up today as a normal twenty something. a normal twenty something who's also a cancer survivor.

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.

TOTALLY DONE!

2010-04-28T21:04:00.003-04:00

today was my LAST treatment! done with chemo, done with radiation, and done with cancer...hopefully forever.

...i've officially earned the title 'cancer survivor'. and now, it's on with life.

radiation...week three.

2010-04-25T10:09:00.002-04:00

there really is little material to write about for this part of the journey. i remember reading that on someone elses blog and thinking that i would surely be able to figure out something to write about. as i learned (the hard way) with associative nausea and chemo, you should always listen to the people who have been there before you. so, with little to write about, i'll just give a brief update...

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.

radiation...week two.

2010-04-18T19:40:00.003-04:00

not a whole lot to report on the radiation front this week.... every day was a non-event, and i'm still amazed by how quickly the treatment actually goes. the getting up early part is starting to wear on me, but luckily, i've had an easy time with side effects. i have no skin irritation, the soreness is better than it was last week, and aside from sleeping over ten hours last night - the fatigue really isn't that bad either. the only side effect i'm starting to feel is the sore throat. and, i don't even know that i'd call it a sore throat...it feels like food gets stuck in my throat, or doesn't go all the way down, when i swallow. it doesn't hurt, but it's not comfortable, either. although, that seems to have subsided a bit over the weekend...so, we'll see how that progresses...hopefully it won't.

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.

it's how you face each day that matters

2010-04-14T20:03:00.003-04:00

with cancer, it is well known there are many things you cannot control...however, there are lots of things that you can. and, you can certainly control the way you wake up and face every day...

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".

radiation...week one.

2010-04-09T19:34:00.001-04:00

it's hard to believe that i am just over a month out of chemo. that's crazy! it seems like it would never end, but this last month has flown by! i've been meaning to update, but with radiation at eight thirty every morning and then a full time work schedule, getting things in order for grad school, doctor's appointments and a social life...well, it just hasn't happened. so, i'll do my best to keep up with weekly updates through radiation...then hopefully back to more insightful posts about cancer survivorship. first, let me bring you up to speed...

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.

wear sunscreen...

2010-03-31T08:31:00.007-04:00

some mornings while i drink my coffee and put my itunes on shuffle i hear some old favorites. this morning, it was an incredible sequence...as if itunes could sense my mood and played songs that fit right into everything that's going on in my life right at this very moment. just as i was getting ready to turn it off and head out for the day, a song came on that stopped me and made me listen...a song that i've always loved, but really hit home today...it's a classic, you all will know it. enjoy.

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
imagine.

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

Sing

Don’t be reckless with other people’s hearts, don’t put up with
people who are reckless with yours.

Floss

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
yourself.

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.

Stretch

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
own..

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.

Travel.

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
look 85.

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
it’s worth.

But trust me on the sunscreen…

-Baz Luhrmann-

everything is different

2010-03-29T09:39:00.001-04:00

i have never had a whole lot of anxiety. of course i've had it here and there, but it's never stood out as one of my more prominent emotions. then i was diagnosed with cancer...and everything changed.

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'...

NO treatment today!

2010-03-23T09:17:00.004-04:00

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'.

'words are inadequate'

2010-03-18T10:04:00.001-04:00

a fantastic article from the NY times...

'with cancer, let's face it: words are inadequate'

moving on...

2010-03-17T10:04:00.002-04:00

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.

side effects 101

2010-03-14T10:51:00.003-04:00

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.

six cycles = TOTALLY DONE!

2010-03-10T08:51:00.004-05:00

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!

'the tyranny of positive thinking'

2010-03-07T11:08:00.002-05:00

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.

'the tyranny of positive thinking'

radiation, anyone?

2010-03-05T09:11:00.003-05:00

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 excited!

2010-02-27T09:42:00.004-05:00

10 days!

that's it! only TEN days until the LAST 'infusion'!!!!!

to put it into perspective, it's been one hundred and fifty six days since my first treatment, and two hundred and nineteen days since i found out i had cancer. lots of people laugh when they hear that i have the exact count, to the day, of everything. trust me, if you had cancer, you'd know exactly how many days it was until every milestone. i could easily tell you every major date off the top of my head, and i've never remembered dates...these are ones you don't easily forget.

11 down, 1 to go!

2010-02-24T07:43:00.003-05:00

i've nearly done it...only ONE treatment to go! it's unbelievable, i never, ever thought i'd make it to this point. another hodge warrior once told me this is like a marathon, and the only way to get through it is to put one foot in front of the other, and not think of how many miles you have left to go. it was one of the most fantastic pieces of advice i've recieved...and, now that i'm in the last miles, i just have to make that last push to the finish!

treatment was quite an ordeal yesterday.... i went to the hospital for a pulmonary function test bright and early to continue to monitor any possibility of bleo toxicity. my dad came, and he likes to watch the monitor and cheer me on...he's the best. the results were fine, exactly the same as the last one. so, it's dropped a bit since we first started, but remained consistent in the last couple months...so, i just hope once i'm out of treatment i get back to where i was. my actual lung capacity is better, though...which i imagine is because i no longer have a grapefruit size tumor pressing on my lung. my cough and respiratory symptoms are gone now, too, so my oncologist isn't concerned that we've created bleo toxicity. so, we finish it all out with the bleo. what a saga that was. although, i'm very confident that making it into such a big deal (with the growth factors/bleo toxicity) was what i needed to do. i sincerely thanked my oncologist for treating me without growth factors yesterday, and he told me that he thinks we did the right thing. i know if i hadn't brought it up, i'd have been treated with them, and so, it just reinforced how critical it is to be involved in every decision that's made about your own care, and to be an advocate for yourself. that said, being an advocate takes work. you should never just demand something because you 'feel' like it's the right thing to do...being a good advocate means reading academic research, asking your doctors lots of questions, calling in other opinions/experts when needed, and evaluating your own situation apart from the statistics. it's a big job, and it's so important.

anyways...my counts were really low this week. my red blood cells and platelets are still fine, but my total white blood count and neutrophils were real low. my oncologist decided to just push forward though, as they've been pretty good up until this week and our agreement was to treat on time, regardless of counts...and, i'm almost at the end, in a couple weeks my count will be on the mend. of course, when i walked out back, the nurse starting my treatment (my nurse was at lunch) was really concerned and asked me if they had talked to me about my counts. as a side note, it always makes me feel really, really good when they do this...just shows how many checks there are in place so nothing gets missed.

so treatment began, and all my drugs came out except the really big bag (DTIC, for all you hodgers). when my nurse came back from lunch she went to investigate where it was. turns out, when they went to mix the drug they 'weren't happy' with how it looked, so they discarded it. however, they didn't have any more on hand. so, they had to call the hospital for a rush delivery. turns out, when DTIC is exposed to sunlight it becomes inactive, and turns pink. well, it mixed and looked pink...they don't know how or why it got exposed, but they didn't want to use it. so, i had to wait almost an hour for the delivery, and then we were on the way.

and, thank goodness for nurses. i've become pretty close with a few of them, and they never fail to be the most amazing, supportive, fun group of people in the world. and, yesterday, they must have been the most entertaining they have ever been. one of my favorite nurses, who doesn't usually work tuesdays, was covering for someone, so she was added to the mix, which made it even more wonderful. i can't say enough good things about them...they are my heroes.

so that's all i've got this time around. no nausea yet...took ativan again, which seems to be doing wonders (thanks, jenny), and i plan to just try and stay ahead of the nausea and see if i can make it through as easy as the last one. next week i head to boston for a consult with the radiation oncologist who's an expert in radiation for the hodge. then later in the week i have a consult with the radiation oncologist up here. hopefully i'll be able to have radiation done here, but if the expert tells me that it needs to be done in boston with his team, then i'll probably end up in boston. radiation isn't anything i want to take chances with. but, we'll see. so, another busy week, then it'll be the day of my last treatment before i know it! SO excited!

will there ever be a balance?

2010-02-19T11:45:00.001-05:00

i've realized, as of late, that i really do live a double life. one week i play the role of cancer patient, and the next week i play the role of a busy, relatively 'normal' twenty-something. some weeks the lines are more blurred than others, but lately, it's been quite separate. in fact, i sat down to write this post almost a week ago, but got so busy with my week off from cancer that i haven't had time to sit down again until now...

it's an interesting balance. in the beginning, cancer was my primary focus. for the first two months before finally being diagnosed, there was no balance...it was all cancer, all the time. physically i was at appointments all the time, but i was also mentally consumed thinking about everything and trying to wrap my head around all of it. it was so draining that i never thought i'd survive the journey ahead. the first couple months of treatment were a little more balanced, i'd go to work in between treatments, and didn't have as many appointments, but i still thought about cancer and everything i had to deal with a lot more than i thought about everything else in my life. somewhere around the halfway point, it started to become a fifty-fifty balance...i'd think about cancer a lot on my treatment week, and wouldn't think about it too much on my off week.

and, that brings us to now.... there's hardly a balance, i think about cancer on the day of treatment, and a little the days after, but my main focus is on everything else in my life. even on my recovery days there's not a lot of focus on cancer. i think about how i feel miserable, but it's not the same anxiety causing, 'what ifs' mindset. this past week, while recovering, i was making appointments for grad school, setting up my internship, and preparing to file my taxes. and, on my off week, i've been so focused on getting things in order for grad school in the fall and on work that i haven't really even thought about cancer.

mentally, i'm in a much, much better place than i have been since this cancer business began in july. however, i'm starting to wonder if i'll ever find a balance, or if i've found it...and, i also wonder what on earth the new normal will be.

it's unreasonable to try and fully focus on other things. why? because i have cancer (or had cancer), and it will always be a part of my life and who i am. you don't just get through cancer treatment and move on. i'll have a lot of follow up appointments, and i'll always have worry in the back of my mind. it gets better with time, but i have to learn to accept everything that goes with it from this point forward. with cancer you don't get to forget...and, thats normal. i don't think i'd want to forget, even if i could, i just want to be able to focus the thoughts on something productive...like taking the best care of myself i can, living every day to the fullest, and using my experience to help others.

perhaps i've reached the place where i should be. i don't focus on cancer too much outside of the doctor's office, and i always said i wanted to leave the details to my medical team. i've been able to push forward in my life outside of cancer...socially, academically, professionally and personally. i haven't let cancer drag me down, or throw my life off course. in fact, i'd say my life is more on course than it's ever been. i feel a much greater sense of purpose, i've created incredible relationships with people i wouldn't have in my life if it weren't for cancer, and i've shed my fear of taking risks. is it possible to come out of cancer better than when you went into it? i hope so.

it's safe to say cancer has totally changed my idea of balance. and it's probably a good thing, because i never did well with balance before anyways...

five cycles = DONE!

2010-02-10T09:36:00.005-05:00

well, folks, we're closing in on the last and final cycle! and, i'm excited to report that this treatment was far less eventful than the last one! so, here are a few updates...

i saw my oncologist, who really didn't have much to say aside from telling me how well i'm holding up and reminding me that i'm almost there. he also said my blood looked 'perfect'. it's, of course, not perfect for someone who isn't in treatment, but it's really nice to know that after going through four and a half months of treatment that my red blood cells and platelets are holding tough. my white blood cells are taking a little bit of a hit (which is totally expected), but my overall white blood count was within normal range, so that's a good sign. i also told him that i needed a little motivation, and asked him to show me my chest x-ray and give me a 'pep talk' about how treatment was working. he laughed a little, and told me that he would do whatever he had to do to help me get through these last ones. so, he pulled up my pre-treatment chest x-ray and compared it to the one i had two treatments ago. he pointed out the difference (which doesn't need much pointing out...anyone could see the change), and said "looking at this from the front, it could easily be missed". he said it's when you look at the side view that you could see there's something going on that shouldn't be there. however, it's such a dramatic improvement, and he reiterated how it's a really good sign, and he's very happy with the way things are going. he's a great doctor, and i so appreciate him taking the time to give me a 'pep talk'...it really helps to get through the tough days knowing that what i have to go through isn't without purpose. it still sucks, but mentally i can tough it out a lot better knowing that the physical crap is just something i have to get through to get better.

treatment itself was uneventful. no crazy chills, no instant nausea, no headaches. and, i can't say anything else without giving serious credit to the most amazing nurse in the entire world...jenny. she's been with me since day one, and seen every single part of this with me - the good, bad, and the ugly (often really ugly). i wouldn't make it through any of this without her. she's seen me go through treatments relatively easily, and recently, she's seen me have a really hard time. i'm a little stubborn about taking medications (never in my life have i taken more than tylenol...and i even fight that). however, jenny was somehow able to break through my stubborness (it took her several months), and got me to take ativan yesterday during my treatment. i had a little bit of my normal queasy feeling, but i have had no nausea yet...which is a serious improvement from last time, when i couldn't even get out of bed. i've eaten meals normally since i came home, slept well, and now i'm sitting up typing this. i told her she was allowed to say 'i told you so', and not too long later, i got it...in big letters 'TOLD YOU SO'. she earned it. she earned every little bit of throwing it in my face that she was right and i should have listened to her. and, you know what? i don't know of many people who wouldn't totally piss me off if they said 'i told you so'. she will forever have a place in my heart as the one who really pulled me through the hardest thing i've ever had to do. every single day i think of how thankful i am that i 'landed' in her chair on the first day of treatment...i can't imagine having to do this without her. i hope everyone is as lucky as i am to have a nurse, and a friend, like jenny.

so, here's to hoping this one is an 'easy' one. only two left after i get through this one...yay! and, many of you have been asking what's next. well, radiation. i was told yesterday that around the time i'd be going back for treatment i'll get started with the radiation team. we have to wait for my counts to return to normal (which shouldn't take too long), and then i have to go through scanning, mapping and all the planning. and, i have to go back to dana farber in boston for a radiation consult with one of the leading experts in hodge radiation. so, there will be lots to do once i finish up that last treatment...but i have to get there first! that light at the end of the tunnel is totally illuminated now!

what to say?

2010-02-05T09:56:00.008-05:00

lately, there's been a lot of talk about 'things not to say to a cancer patient' on the forums.... it's a tough topic, because from the outside of the cancer world, it's hard to want to be there, and be the most supportive person you can be but to not always know how...and from the inside of the cancer world, it's hard to tell people what we're dealing with and how we want to be supported. really, there's no easy solution, and i can say from where i'm standing, in the midst of treatment, that we cancer warriors are a tough crowd. we want everyone to understand us, but very few people do...and that's a hard thing to accept. so, instead of ranting about how people don't 'get us', i'm going to do my best to help those of you outside the cancer world understand what we mean. here are the three things i hear most that are the hardest to respond to...

"at least you got a good cancer"
first of all, getting any cancer sucks. it doesn't matter what kind - you'd know exactly what i mean if you ever had to sit there and listen to a doctor tell you that you had cancer. and, as good as this cancer is, i still need chemotherapy and radiation. yes, i am very happy with the high cure rate, but i can assure you, it's no walk in the park to earn that prognosis - you aren't just handed it when you're diagnosed with the hodge...you have to work hard for it. and as good as this cancer is, people die from it. in fact, the first time i ever heard about this cancer was when i was ten...and a classmate died from hodgkin's disease. so, join me in feeling fortunate that i have a cancer that usually responds well to treatment, and then join me in hoping that statistics are on my side. but, please, don't tell me i got the good kind of cancer.

"you're so strong, i couldn't do what you do"
until you've been diagnosed with cancer, you have no idea what you can do. the very moment a doctor tells you that you have cancer, everything changes. it's not about strength, it's about something deep inside all of us...and we all have it. i didn't think i had it, and then i realized the choices were, quite literally, 'do or die'. that doesn't make me strong, it makes me the same as every one of you. if someone told you that you could run away or stand still and get shot, what would you do? run? that's what i would do, too. i can almost guarentee i'm no stronger than anyone else, i've just been forced to uncover what i have inside me to get through this. if you had to do it, you would, too, and you'd understand exactly what i mean.

"how do you feel?"
this is a tricky one, because i know you mean well and really do care how i'm feeling. here's the problem...i probably won't really tell you how i'm feeling. why? because lots of times when you ask i feel miserable, and i refuse to always tell everyone how terrible i feel. the only people who need to hear how i feel are my doctors and nurses...the rest of you will be spared the less than pleasant details of dealing with the side effects of cancer treatment. so, instead of asking me how i feel, if you really want to know how things are going, ask about what's going on in my life.... that's the other thing, i do have a life aside from the cancer business, and there are lots of exciting things that happen in that life that have nothing to do with cancer. i think it's hard for people to not focus on the cancer, but trust me, i really don't want to focus on it and it helps if you don't, either.

the journey of a cancer warrior

2010-01-31T12:20:00.002-05:00

this post needs to be done in two parts...

part one...earning the title of cancer warrior
why cancer warrior? because cancer survivor doesn't do it justice...we fight, and we fight hard

so, lately i've felt really, really drained. there's no other way to explain it...i'm just totally, 100% exhausted. this treatment stuff really takes it out of you, and they warned me it would get worse as it built up in my body...but no one can really prepare you for it. i don't want anyone to think, however, that i've lost sight of my optimistic attitude. it's still there, i've just reached the point where i have to use all my energy to fight...and sometimes it's just not as pretty.

i know it's impossible for me to really explain what all this is like, and thank goodness most of you won't ever have to find out. i will, however, do my darndnest to give you a little glimpse into this part of the journey.... try to remember a time you've felt really, really sick. the no energy, nauseous, headache, all over hurt kind of sick. now, imagine someone forcing you to repeat that twelve times...once every other week for six months.

in the beginning it's not so bad...you've been set out on a quest to fight for your life. there's a novelty to it, and you feel ready to fight with everything you've got. there's a sense of victory just knowing that you're killing cancer, and even though you have to go through hell every other week, it feels like nothing can take the will to fight from you. then, several months later, it starts to wear off... which is where we are now. it's like those horror movies where the same day keeps repeating itself over and over again. it's like being aware of how terrible what you're about to venture into is, and still walking into treatment every other week to do battle again.

but, there's something that keeps you going back every other week. maybe it's a routine, maybe it's because you somehow convince yourself it might not be so bad, and maybe it's because you know that even though you're tired you have to keep fighting. the will to fight is so deeply embedded in you at this point that while you convince yourself you can't do it anymore, you find yourself getting up, pushing forward, and doing everything you have to do to win...because even though you don't talk about it often, you're bitterly aware of what happens if you give up.

part two...inside the mind of a cancer warrior
the link isn't my writing, but i've been trying for weeks to put into words everything she's said...

"the cancer rant"

one of the hardest parts of this experience for me has been facing the bad days. i don't do well with bad days, i never have. i don't like to be anything less than positive, fun and optimistic. it's been six months since i found out i had cancer, and i'm finally accepting that i have bad days. i recently posted on the hodge forum that i was having a tough time getting through the end of treatment.... i feel miserable, i feel defeated, i feel frustrated, and i feel alone. i woke up the next morning, and many people had responded to my post and every single one of them said something along the lines of 'i get it...i was there, too'. it was that very moment that i realized i'm not alone, and everything i'm feeling is normal...there are just very few people who 'get it'. i have cancer, and gosh darnit, i'm entitled to have bad days, and it's alright for people to know about it.

...and guess what? even though i have bad days, and i'm learning to embrace the wide array of emotions that are associated with doing battle with cancer, i'm still a happy, optimistic person. a fellow hodge warrior told me that cancer has made her range of emotions so much deeper...the best is even better, and the worst is a little worse. but, she also told me, she wouldn't change the best for anything in the world.

9 down, 3 to go!

2010-01-27T09:29:00.003-05:00

sooo close to the finish line! it won't come a day too soon, that's for sure.

yesterday was actually a fairly eventful day. i saw my oncologist to have the big discussion about continuing with the bleo. he said while my lung function dropped a bit, it's still where it was when we started (it had increased in the middle), and my lungs looked fine on the chest x-ray and sounded fine, too. he also said he doesn't think my symptoms are consistent with what they see with lung toxicity from the bleo. so, based on all that his vote was to keep the drug in for now and have the same discussion again before every treatment from here on out. basically, he said he doesn't think dropping it would be the reason for treatment failure (which he doesn't expect to happen anyways, but we always have to consider it), especially since i'll be getting radiation, but he doesn't want to drop a potentially curative drug from the regimen without good reason. he told me it was my choice, but i asked him to make the decision.... my fear is less rational than his very thorough evaluation and years of experience. he took my concern very, very seriously and so i feel very, very confident in his advice. he's also made it quite clear from the beginning that he cares a lot about my future, and i know he would never make a decision that he knows isn't the best one. no one can totally predict how any of this will go, but that's just cancer...

during treatment i got to meet with the oncology dietician. she's one of the coolest people you could ever meet. and, she's a total health nut like i am, so it's a lot of fun to pick her brain on things. we chatted for a while about things i can eat to get through the rest of treatment, which is super helpful since i've started to run out of ideas of semi-nutritious but bland foods to eat when i don't feel well. but, most of all, it was just really fun to catch up with her. treatment went well until i got some serious chills at the very end. not so sure what that was about, but they kept me for a little while after i was done to make sure it stopped. i think i've just had chemical overload, and on top of whatever virus is lingering in me from that cold i had it just was too much.

and, i saved the best for last. my oncologist showed me the chest x-ray i had last week and compared it to the first one. on the first x-ray (pre-treatment) the mass was covering the entire lower half of my right lung field. the most recent x-ray, as my oncologist says, is still "a little abnormal", but you can see my entire lung field, and the mass is just a little bump on the right of my mid-line. sure, it's a "little abnormal", but i could have that scar tissue forever...and, it's a significant decrease in size...a very, very good thing!

so, all in all...just to be able to see the improvement since when we first started, and to know i'm so close to the end makes it much easier to just tough it out. i feel so fortunate that at the end of all this i'm likely to do very well. i've got lots of life left in me to live...and i plan to keep living it all.

words of wisdom

2010-01-22T08:58:00.003-05:00

i have my friends chelsea and nick to thank for my latest inspiration. they began their journey with the hodge in november, and chelsea recently posted something on her blog that i haven't been able to put into words like she did. she said whether you choose to be positive or negative about it, you still have to get through treatment. something about that one sentence struck such a chord with me. i think it was the reminder i needed right at that very moment. it was a refresher in how important attitude is.

it makes me think about how so many people face life and every day challenges with a focus on the negative. i don't get it. either way, you do have to get through it...so why not be positive? i don't know that i'll ever understand the way other people view their own difficulties. but i don't need to understand, i just need to accept.

as for letting challenges get in the way...i don't buy into that, either. it takes time, and it's definitely a learning process, but it's so important to live in spite of whatever is going on that we can't control. what are we all waiting for? tomorrow? maybe, but tomorrow is never promised, so live today.

...speaking of today, here's a little update. the last treatment kicked me down pretty hard, and i'm hoping that the rest aren't that bad. but, it passed, as it always does by day five. it's like clock work these days. this week has been busy as usual. work every day, a meeting with a very wonderful social worker (i'll post about this...so fun), and a meeting with my field placement coordinator about my first year internship. today i have another pulmonary function test to see how we're doing in that department, then work for a few hours, a visit with the most wonderful doctor in the world, and then a few days off! with fun adventures planned, of course. it's hard to believe that it's almost time for treatment nine. almost done!

four cycles = DONE!

2010-01-14T09:03:00.003-05:00

had treatment eight yesterday...only four more to go! yesterday was fairly routine, but here's a few updates...

i caught a cold last week, and it resolved pretty quickly (especially for someone with no immune system), but i developed a funny tightness in my chest. of course, my thoughts immediately go to the likelihood that it's toxicity from the drug notorious for causing lung trouble. the nurse practitioner i saw was very thorough, as always, and said my lungs sound clear, my oxygen levels were fine, and since my last pulmonary function test a month ago was improved from the first one that there's no indication the drug is the cause and it's likely left over from my cold. i very much trust her opinion, and i feel much better. i'll have another pulmonary function test next week to just make sure i'm still doing alright, but those are no big deal.

also, i had an extra day off this week for my birthday (got treatment wednesday instead of tuesday) and my white blood counts were quite a bit higher than they have been in a couple weeks. it doesn't mean much as they'll probably drop again before the next one, but it's just nice to see them come up every now and then. poor cells take such a beating.

lastly, yesterday i was reminded how wonderful nurses are. of course the nurse practitioner, my oncologists nurse and my treatment nurse continue to be three of the most wonderful people i've ever met...but, in addition to them, i've met quite a few other nurses recently, and they all have a way of making me feel like it's not so bad. if it weren't for them, i'd never, ever make it through treatment. they deserve so much credit.

that's really all i've got for updates. i'm now through the 'essential' treatments. the experts at dana farber said four cycles would probably be enough, but we're going six to be sure (and i'm totally on board with that). the only reason i mention it is because it's a little victory...the rest is sort of my 'insurance plan'...and i like to think i've officially made it through the necessary treatments. i still have four to go, and it's not like they will suck any less, but it's just nice to point out the milestone here.

oh, and 53 days until the LAST treatment...hopefully last one ever!

the universe really does have a way of working things out...

2010-01-08T08:28:00.008-05:00

everything has its own place and function. that applies to people, although many don't seem to realize it, stuck as they are in the wrong job, the wrong marriage, or the wrong house. when you know and respect your inner nature, you know where you belong. you also know where you don't belong.
-the tao of pooh

i really do believe there's some sort of universal power that sets each of us on a path. however, i think so many people are so caught up in trying to make it through life that they aren't open to being in tune with the universe and their own intuition. as a result, we often miss the path we're supposed to be on. call it crazy, but i think until cancer shook things up for me, i wasn't able to really see the path i was on. to prove my theory, i'm going to tell the parts of my story that lead me to believe this way...

back in '08 i was in graduate school studying public policy. i realized how much i hated it, and needed out...but had no idea where i needed to go. i was ready to move to washington d.c., but had a gut feeling it wasn't the right thing to do. backed out last minute and moved back to portland. without money and living in an apartment that i couldn't afford, i applied for any job i could find and ended up at starbucks. i've never, ever been one to really value health insurance, but since they offered such good benefits i figured 'why the heck not' and signed up for the least expensive health insurance for no other reason than to tout my independence. our insurance plan allowed us a fully covered well exam (hadn't had one since the one you have before college), so i went to the site and chose the doctor who looked the nicest, but she wasn't seeing new patients for months, so i let it go (i figured i didn't really need a primary care doctor anyways). went to my annual gyn appointment, and ended up needing a follow up with a primary care...she asked who mine was, and i threw out the name of the doctor i thought was the nicest, even though i knew i wasn't an established patient of hers. sure enough, a week later i had an appointment with that primary care doctor (other doctors can make anything happen). four months later, that doctor saved my life.

that's just the path to diagnosis.... a series of fortunate coincidences? perhaps. following my gut feeling on a lot of different things? yes. i say it was intuition. the universe knew what needed to happen, and who's care i needed to be in...

now for the part i really have enjoyed.... when i moved back to portland i wanted to figure out what i wanted to do with my life. having spent my entire college career in various volunteer positions, i started working in non-profits part time in addition to starbucks, and i quickly realized that service is really what i live for, so i applied to grad school again, this time for social work. one of the questions on the application was how we've experienced discrimination/oppression in our lives. here's what i wrote...

In my social service experience, I have been very fortunate to encounter many diverse individuals, communities and situations that many people my age have not. Unfortunately, as an educated, white individual from a relatively wealthy family, I have had little experience with discrimination and oppression from society. One may wonder why I describe this as ‘unfortunate’, and I think my answer is simple; I do not have the ability to empathize with individuals who have experienced discrimination and oppression in the same way that they can empathize with one another. I certainly can sympathize with them, but I have learned in my experiences that sympathy doesn’t really do much good, as individuals who have experienced discrimination and oppression often don’t want to accept sympathy from those who haven’t experienced it, and rightfully so....

...substitute 'discrimination and oppression' with 'adversity' every time it appears in that part of my essay, and it's almost scary that i wrote that seven months before i was diagnosed with cancer. so, while my education is on hold, i think it's clear that i needed a year of 'life experience' to make me a better, more compassionate person. this year off from school, i believe, is really more valuable than anything i will learn in school. and, i really do believe that it happened right before i started my master's for a reason. i know this experience is a personal one, but i really think the 'reason' for all of it is to help me help others.

so...there is is. i can't reflect on everything that's happened in the past couple years and not see the path i think i'm supposed to be on. i feel so confident in where i'm headed, and it's really the first time in my life i haven't questioned whether or not i'm doing the right thing. and, it gives so much purpose to dealing with cancer.... while some people focus on how it has upset their lives, i choose to focus on how it's really changed my life for the better. it's all in perspective, i guess...

bad days

2010-01-04T22:04:00.009-05:00

through this experience with cancer, i've tried to focus on the lessons, and tried to learn as much as i could. i remember thinking during the first few weeks of my diagnosis that i had a lot to learn, and it almost 'made sense' for me to experience cancer. i should mention that i have a very strong sense that the universe works everything out the way it should, so i don't feel randomly victimized by cancer, nor do i think some higher power 'chose me'. i simply take the hand as it's dealt, and try figure out what i have to gain from it instead of seeing what i have to lose. and, five months later i've realized that there's a whole lot more to learn than i ever thought...

the biggest challenge i've faced is coming to terms with my own issues. i have a really strong superwoman complex, and try really hard to be the 'perfect cancer patient'...always optimistic, smiling and taking everything one day at a time. most of the time it comes naturally and i am genuinely optimistic, hopeful and full of life. i really feel that this experience with cancer is the best thing to happen to me, and has given me so much. however, getting through the marathon treatment (close to nine months once it's all done) would drag anyone down to a few bad days.

i don't like to have bad days. bad days remind me that cancer is a scary thing. bad days remind me that i'm not superwoman. and bad days remind me that cancer has left me with issues to resolve (or surfaced them, anyways). everyone tells me it's alright to have bad days, and even that it's expected. well, i still don't like them. and, i don't often (if ever) show them to anyone. but, a lot of the experience with cancer is becoming real, learning everything i can, and being able to help others. i can't do any of those things without admitting that i, too, have bad days.

so, in my typical coping style, i try to find the good in the bad days. one thing bad days are good for is forcing me to face the things i've pushed aside. i've carried through with such genuine optimism most of the time, which makes me totally forget that experiencing cancer is life changing. it's a big deal, especially at a young age, to face your own mortality. i deserve a little credit for just surviving diagnosis and treatment. i also deserve to give myself room to reflect on just how traumatizing it is to go through. not traumatizing in the way many of us think of it, but in the sense that life really got shaken up, and things moved so quickly that i didn't have time to deal with all of it. so, i guess i should be allowed a little time to do so every now and then.

another thing bad days are good for is reminding me that i'm human. once i was diagnosed, i became a cancer warrior, and have found that my optimistic attitude and fearless fighter role has left me with quite a superwoman complex. every time i have a bad day i worry first about how others will be affected by it, and spend little time focusing on what's going on with me. instead, i try to hide the bad day so it doesn't worry anyone else. this is the hardest part of bad days. one day i'll figure it out. until then, i will try to admit to myself that i, too, am still just human.

and, lastly, the most meaningful thing about my experience has been my ability to help others, and gaining experience and wisdom to continue to help others in the future. every time i can reach out and use my experience with cancer to help someone i'm reminded that every bit of hell i've gone through is so worth it. so, i've decided to pursue oncology social work once i've completed my masters. some people ask me if it'll be tough for me to be around cancer all the time, and see a lot of the really dark parts of cancer that i haven't seen with my experience. it might be, but it's not about me. i know i have a lot to offer from having experienced cancer...and, while it may be tough, if it can help someone else, it'll be worth it. so, how do bad days relate to this? well, if i never had any issues with my cancer experience i bet it'd be harder to relate to other cancer patients in my career. and, bad days remind me i have issues to resolve, and that's something i need to do before i can really help anyone else. so, bad days will help me help others.

...this may be the longest and most honest blog post yet. and, it may be more for my own personal growth than anything else. but, as part of my journey, i think it's important that i start owning up to the fact that i have bad days...i can be optimistic and still have bad days. perhaps i'm still learning that the two can, in fact, go together. moral of the story...bad days can do a lot of good.

7 down, 5 to go!

2009-12-30T08:08:00.002-05:00

yeaaa! so excited that i've now finished more treatments than i have left! the end is totally in sight, i've already got treatment #8 and #9 in my planner...then only three more after that!!!

this weekend was fantastic, two of my closest friends from college drove up to visit from new york and massachusettes. the weekend was very similar to a high school sleepover...lots of laughing, gossip, shopping, board games, etc...so fun! then one of my friends was able to stay an extra night, so we went out to a nice dinner, out for coffee, and then she was able to take me to treatment tuesday. it was wonderful.

not a whole lot is new and exciting on the cancer front. things really have become so routine, and there aren't many decisions left to make for this chapter of treatment...just have to get through it. i feel very, very fortunate that i've had so few side effects from treatment. aside from the day of and three days after each treatment (which are getting much, much easier) i really notice no effects of treatment. in fact, i feel better than ever in between treatments...which is fantastic, but it makes the process of convincing myself to go back every other week a little more difficult.

overall i feel so fortunate for everything. and, i can actually start to see life after treatment which is really, really exciting! i know i'll have challenges in the next few years as i learn to live after cancer, but i think i'm ready for it.

life is fantastic...

2009-12-26T14:12:00.003-05:00

it's funny, i never thought that during cancer treatment i'd be able to say that life is better than it ever has been. but, it is. physically, i feel better than ever...no fatigue, no more frustration of lots of random symptoms that no one could add up. but aside from just the physical feeling of wellness, i really think my life is exactly where it's supposed to be now more than it ever has been.

i wake up every day with a new energy for life. i've found a new energy for setting goals and really working to achieve them. before fatigue took over my life, i was training for triathlons...it got so bad that i didn't work out at all for the last year. and for the last month or so i've been working out regularly on my good week. it's not where i used to be, but i remember my oncologist telling me that he'd get me back there...and i think we're on our way. i plan to sign up for the tri for a cure, and start really training in the spring when i can fully recover. oh, and i got a yoga class for christmas which i'm really excited about. i've wanted to do it forever, but i never have.

another thing i put on hold when i was diagnosed was school. i had enrolled part time for practicality sake...i could work full time and do school part time. i didn't want to take four years to start my career with my MSW, but it made sense. since all this happened, i realize not everything in life makes sense, so i've decided to throw practicality out the window and start my MSW full time in the fall. i don't know how i'll make it work with finances and health insurance, but i know one thing...i'm not waiting on things i want anymore, it's time to make things happen.

i also feel so much more appreciative of everything and everyone in my life. my family, friends, cancer fighters (aka my medical team), and my students. i wake up every day excited to know that it's filled with people who add so much to my life and that i can work in a position that teaches me so much and gives me so many things to be grateful for.

it's odd to think that a disease that's to awful can do so much good. so, thank you cancer for the opportunity to be on this journey. i'll be happy when you're gone for good, but i'll always appreciate the experience you gave me.

three cycles = DONE!

2009-12-22T08:55:00.005-05:00

not a whole lot in the way of updates for finishing this cycle. it's the halfway mark, though, so that's quite exciting! it's hard to put into words how excited i am to shed all these restrictions and get back to life. my wonderful nurse told me to make a list of things i'll do when i feel amazing again...i'll post it here when i get more things on the list. i was always hesitant to make a 'list of things to do before i die' because i didn't want to face my own mortality. well, that's been done, and now the name of the list seems inappropriate...i'll call it my 'list of things to do while i'm living', which i think more accurately reflects my new perspective on life. and, as excited as i am to get back to life, i'm excited to get back to life because of this experience and everything it's given me...i have a stronger sense of purpose for being here, and i'm so excited to see where life takes me next.

also, because i know many of my fellow hodge warriors follow this blog, i'm going to take a little time to add my new found wisdom on managing side effects. it seems my sole side effect of ABVD has been nausea. so bad at first that i'd end up in tears just because i was so overwhelmed. it was the side effect i feared most, and for good reason...no one ever deserves to feel that sick. for the first four treatments i added medication to medication to try and control the nausea, and it got worse and worse with each treatment. until treatment four, when i asked the lymphoma expert at dana farber to give me something new to try. basically, what it melted down to was that a lot of the medications do the same thing, and so they have no additional benefit, and in fact, may make it worse because they each have their own side effects (zofran headaches, anyone?). i also decided i may have been dehydrated, so i figured i'd add water to my anti-nausea line up (it can't hurt, right?). since then, i've had two treatments with only the anti-nausea medications in the IV drip and one additional medication at home, as well as three liters of water a day for five days (day before and three days after). it might be chance, but i have had significantly less nausea. i think i'm on to something...perhaps less really is more, and drinking lots of water is the best and easiest thing to do. i got so terrified to wean back on medications fearing it would make it worse...until i realized i couldn't keep up the way it was going, so i'd try anything. i'm so glad it worked...here's to hoping it keeps working.

and, in case anyone is wondering...75 days until the end of this chapter of treatment!

update.

2009-12-14T19:45:00.004-05:00

so here it is...the mid-treatment update!

as you all know, i had a scan after the second cycle, and there was a little gray area as to whether it was negative or not. my oncologist called the day after our appointment and said that he had it re-read by the head of nuclear medicine because he couldn't convince himself that there was any disease left, and that they agreed that it was a negative scan, but that we should send it to dana farber for the final call. so, i went to dana farber today, and we discussed the scan and what to do with the rest of treatment. they said that my scan definitely falls into the 'negative interim scan' group as far as prognosis. this means that my chance of staying in remission went from about 85% to 95%...which is just about as good as it gets. so, things look really good!

the recommendation for treatment was to go the full six cycles instead of just four, and then head to radiation. they said that four and radiation would probably be enough, but that going the full six cycles would really ensure that we've done everything that we can do now...and hodgkin's is much more treatable the first time around. you can't ever do the first line treatment again, and the second line treatment is high dose chemotherapy with a stem cell transplant. so, given the initial size of the mass, we'll go the full six with radiation to be sure we don't have any regrets. that said, they made it clear if there's any indication that i can't tolerate any more chemotherapy, we can stop anywhere after the fourth cycle. that was just added reassurance. i'm sure i'll make it, but it's nice to know that there's a safety net there. i'll consider the last two cycles my insurance policy.

and, as it relates to whether or not my body can tolerate chemotherapy.... one of the drugs i get is notorious for causing lung toxicity, so we're carefully montiored with pulmonary function tests. i had one at the start, and had another one last week. instead of having a decrease in pulmonary function, i've had a 10% increase! i'll hope it continues, and i'll enjoy the little victory - we all know how competitive i am!

tomorrow is treatment six...halfway! physically, it gets tougher from here...but mentally, i really think i've made it through the toughest part...and that feels good!

cancer awareness.

2009-12-06T14:21:00.013-05:00

in our society, it seems as though our best coping skill for dealing with our fear of cancer is to distance ourselves from it. whether that means following a 'cancer prevention diet' or buying everything that's pink to 'raise awareness'. we have distanced ourselves from cancer so well that we don't have much awareness at all. unless, of course, awareness means that we know that pink is the color ribbon that represents breast cancer. or that lance armstrong fought cancer, and won.

if we really focused on raising awareness, that's when we could quell a lot of fear and lessen the distance between us and cancer. why is it important? because the chance of developing some type of cancer in your lifetime is about 1 in 3. and, i can tell you from this side that cancer is a lot scarier when you don't have it...because once you do, you're forced to understand it and become very close to it.... the worst part of this cancer experience? the initial diagnosis. you have to take a huge leap in a very short time to close the distance we've created as a culture...so why not lessen the distance for everyone in hopes that no one ever has to take such a huge leap? here's a little bit of the awareness i wish i had before cancer...

all the time we see 'for a cure' after something related to cancer, which leads us to believe there is no cure for cancer. there are over two hundred types of cancers...and, in fact, all of them are potentially curable, although it may be extremely rare in some. quite a few cancers, like hodgkin's, are treated with curative intent. cancer is really just the word used for a process where cells don't live and die as they should...it doesn't mean 'a disease that is always fatal'. also, early detection saves lives in every cancer, and it's possible with any cancer...it's just not as easy as a self-exam in lots of cases.

which is the next point.... we've come to fear radiation exposure in our society, and, while i'd never say it's safe, it's often necessary. people are shocked to know that the mass i had, which was the size of a grapefruit, couldn't be seen or felt....which it couldn't, because it's behind my ribs. the only way to detect it was a chest xray, which i was told was unnecessary radiation for a healthy twenty something. sure, the chances of finding cancer were small, but the radiation from that xray is nothing in comparison to the radiation i'll recieve to treat it. radiation exposure can be dangerous, but it can also save lives.

and, it should be said that cancer can happen to anyone. i've heard so many times that no one would look for cancer in a healthy twenty something. true, the chances are so small, but here i am...twenty four, and i'm in otherwise excellent health. cancer doesn't always make you sick, or present in ways we often associate it with. in fact, everyone i've met who's had hodgkin's was a healthy young adult at diagnosis (and they all are now, too). no one should ever feel that because they're healthy that they won't get cancer, or, that because they aren't healthy that they will. cancer is a crazy and unpredictable disease. no one should live in fear, but no one should live in the dark, either.

aside from the association of cancer and dying, the second strongest is probably cancer and it's treatment. our society hasn't done a good job displaying an accurate picture of all cancer treatment. it seems that we only ever see the worst case scenario. there are so many different types of treatments for cancer...chemotherapy, surgery, radiation, immunotherapy, hormone therapy...and i'm sure the list goes on. chemotherapy is easily the most feared of them all. i've said this before, and i'll say it again...each cancer has a different chemo regimen, and mine is supposed to be one of the 'easiest'. i have treatment every fifteen days...i have side effects for four days (including the day of treatment), and then have ten good days. on the good days, you wouldn't know i was in the midst of cancer treatment. it's not easy, and it's not fun, but it's not nearly as bad as i thought it would be. we shouldn't be primed to fear treatment...because it sure beats the pants off the alternative to having treatment. and, as the nurses in my center always say, 'it's temporary'.

cancer isn't easy, but, it's a reality for so many people, and it will be a reality for so many more people in their lifetime. i hope one day we see ads on television that really promote awareness. you can't fight fear with avoidance. you can, however, fight fear with awareness. awareness that comes from really understanding what it's like to live with cancer, through cancer, and live on the other side of cancer. it's not easy, but ask any of the ten million cancer survivors in this country...it can be done.

5 down, 7 to go!

2009-11-30T19:41:00.005-05:00

that's right...i'm almost to the halfway point! although the jury is still out on whether or not we stop after the fourth cycle (eighth treatment) or keep going for the full six cycles (twelve treatments) before it's on to radiation...

you're wondering 'what about your scan?'...well, let's just call it tentatively free of any clear indication of active cancer. my oncologist said that he looked at it and would read it as a negative scan (negative being the goal here), but the nuclear radiologist noted mild uptake "that may or may not represent viable tumor"...which leaves a little gray area. go figure, i seem to fit into so many gray areas. life lesson from cancer #1091...not everything is black and white.

these PET scans are read based on a scale of intensity of uptake from the radioactive glucose. anything metabolic shows uptake (liver, bladder, brain all show uptake, which is normal)...and, since cancer is a metabolic process, it shows uptake. the intensity varies based on the type of cancer and how aggressive it is. at diagnosis, i looked like christmas lights do when you take them out of storage...all balled up, and you plug them in to see if all the bulbs work. just one big lit up mess. now the amount of light coming from it matches just about everything else in there. that's a very good thing. and, the mass that was once the size of a softball is now less than half that. it's really quite amazing to look at the difference...and, this scan was only three months since the first scan.

the light at the end of the tunnel is starting to illuminate a little. i feel just like the little engine that could...so close to the top.

"As it neared the top of the grade, which had so discouraged the larger engines, it went more slowly. However, it still kept saying, "I--think--I--can, I--think--I--can." it reached the top by drawing on bravery and then went on down the grade, congratulating itself by saying, "I thought I could, I thought I could."

so thankful...

2009-11-26T08:40:00.003-05:00

so often we dwell on the things that seem impossible rather than on the things that are possible. so often we are depressed by what remains to be done and forget to be thankful for all that has been done.
Marian Wright Edelman

someone reminded me last night, in the midst of a rough moment, that while i still have a ways to go, i've come a long way and accomplished a lot. these moments, when i lose sight of what i have done and focus too much on what i have left to do are the hardest. so, this thanksgiving, i plan to forget about how far i have left to go and think about everything that's been done already and savor the feeling of accomplishment. and with those accomplishments come so many thanks...

for life. every day is wonderful. there are no guarentees in any of this, and you can choose to face each opportunity searching for the gifts in it or focusing on the difficulties. even in adversity, there is so much to be gained. i've learned that life is truly what we make it, and really has nothing to do with how long we live it for. i'm so thankful for the new perspective so early in my life.

for family and friends. there's no way to survive cancer without a strong web of support. this has been quite the ride so far, and it's not over yet...i feel so fortunate to have everyone i do around me to lift me up and push me forward. i know it's not only a marathon for me, but everyone in my life, too. some days i think it's harder on everyone else, and i'm so thankful for all of them for toughing it out, too.

for the most wonderful cancer fighting team, ever. on every step of this journey, i've met amazing people who have given me so much, and so much more than just medical care. every day they amaze me with their selflessness and kindness. cancer can be scary, but every person on my team has made sure that fear is eliminated, and that i have everything i need to face cancer with a strength i never thought i had. these aren't just doctors, nurses and assistants...they are my heroes, advocates and life savers.

for my fellow cancer warriors. i'm so inspired by each of the people i've met who have, and are, fighting the hodge. especially for michelle...for four years of college we lived on the same floor, had the same classes, same honor societies, and many of the same friends...but, it wasn't until my diagnosis that we became close friends. and, for kerri...who, through this experience, has become an amazing friend and inspiration. without the hodge, i'd never have these friendships...and i wouldn't trade them for the world. you're both a reflection of how wonderful life is, and you help me remember that there is life after cancer. you are the light in the darkest moments.

for my students. for reminding me that there is nothing to gain by focusing on the adversity in our lives. for showing me the importance of focusing on what we can do, and ignoring what others tell us we cannot do. for defying all the odds. for teaching me so much about life. for giving me so many opportunities to laugh, to learn and to be inspired.

the list goes on and on.... this experience has been the single greatest opportunity of my life. it's hard, and at times it has it's dark moments. but, in the end, whatever the outcome, i know it's made me a better and stronger person.

and if we're not thankful for life, regardless of what hand we've been dealt, than what is there left to live for? always look for the things you're thankful for...there's reason to be thankful in everything we're given...sometimes you just have to look a little harder to find it.

two cycles = DONE!

2009-11-18T08:56:00.006-05:00

finished treatment four on friday...and now one third of treatments are DONE. yay! the excitement of finishing each one is waning, though, so i keep trying to pick everything back up and push forward. a good attitude is easier when i don't feel sick...and the nausea is sticking around a little longer than i'd like it to these days.

what's up next? tomorrow i head to dana farber in boston for a second opinion from a lymphoma expert. she'll weigh in on everything, and throw in her two cents on where we go from here with treatment. then, next week i have a scan to see how much progress there's been since starting treatment. send positive thoughts, this scan determines a lot for the next few months. then, a little break for thanksgiving, and back to knock cycle three out of the way.

this is the part where i have to really test my own strength. i did so many relay for life events in college, and i remember reflecting each time on the analogy of the event to those cancer...walking all night without rest.... of course the walk is a little different these days, but i try to keep going, and i know in just a little bit, if life with cancer really is like relay for life, there will be a second wave of energy to keep me up for the next few laps. i might even do the next one backwards, just for fun.

two cents worth...

2009-11-07T08:54:00.014-05:00

lately, we've seen a lot of discussion in the news about the toxicity of chemotherapy - no thanks to suzanne somers for setting off this trend, although she was far from the first person to attack this widely used (and accepted) cancer treatment. here are some of the headlines i found in a quick internet search.... "killer cancer treatment: how chemotherapy kills both cancer cells and cancer patients", "75% of doctors would refuse chemotherapy themselves" and "only 3% of cancer patients survive chemotherapy".

first of all, like cancer, chemotherapy is not one specific entity. i didn't actually understand this until i was diagnosed and discussed treatment...there's hundreds of different mixes of chemotherapy drugs. there are also hundreds of different types of cancer. add those things together, and you end up with thousands of different situations. so, to make any statement about chemotherapy in general has a good chance of missing the mark in lots of cases.

since i can only speak from experience with hodgkin's, i want to state clearly that i have a relatively rare cancer, and the use of chemotherapy in this case is very different than lots of other cancers. in the case of hodgkin's, which is a blood cancer, chemotherapy is the standard treatment. why? it's effective. over 90% of early stage hodgkin's patients can be cured with first line treatment...and something like over 75% of all stages can be cured. it's a fact that more than 3% of people who recieve chemotherapy for hodgkin's (and all lymphomas) survive treatment.

of course chemotherapy is toxic, and of course the side effects tear all of us down and destroy cells that we actually need, too...that's not really news. i won't ever say it doesn't suck. physically, it's the toughest thing i've ever done. however, i can't say i have any hesitation, because in the world we're in now, it's the best chance i have at beating this. i will always hope that one day we find a less toxic treatment for cancer...and everyone i know that's been through treatment hopes for the same thing. who wouldn't? no one would ever wish chemotherapy on anyone...but this is the world we live in now. forty years ago hodgkin's patients had high dose radiation to most of their body to give them the best chance of a cure. that was associated with more toxicity than the current treatment for the same disease...we've made progress. and we will continue to make progress, but we have to live in the here and now. to think that the medical world is inherently evil and not looking for an answer is ridiculous. if there's any doubt, look up how many clinical trials there are right now...they don't just do those for fun.

it's so frustrating to read so many people attack something they know nothing about. you can't possibly say how you'd make a decision unless you're forced to make it. and, i have a hard time believing any of these people are experts on every single treatment for every cancer. i know there are some cancers for which chemotherapy is less effective, but i wouldn't ever pass judgement on how any individual chooses to treat their cancer. in many cases it's a very difficult decision, and i can't imagine having to weigh the risks like that. i hope i never have to. my case was fairly clear cut, and really the only discussion was what type of chemotherapy, how long, and how strong of a dose.

the last thing...for those who say that doctor's are leading patients blindly into these treatments, i say that's their fault. i never, even for a second, thought that i had no responsibility to be educated, ask questions, advocate for myself and choose a doctor i trust. doctor's are human, not super-humans, and we should never expect that. i have an oncologist who i trust, respect and who i know would never offer me a treatment he wouldn't at least consider himself if he were in the same position. he also can't read my mind and answer all my questions or offer expert advice on something i want to know more about if i don't say something. his job is to answer all the questions i have, find information if he doesn't have it, and to offer treatments and advice. he can't make a decision for me. it's my choice to show up every two weeks for treatment, and it's my choice to continue under his care. if someone turns their own decision making ability over to their doctor and they don't like the end result, that's their fault, not the doctor's.

the moral of the story...there are lots of choices in cancer (and in life), and there is not just one answer. we all want to live, and the way in which we choose to do that doesn't deserve judgement.

3 down, 9 to go!

2009-11-04T08:50:00.010-05:00

i was warned by fellow cancer survivors about hitting a wall during treatment. usually around treatment four or five...when you're not quite halfway there, and there's no light at the end of the treatment tunnel yet. it's treatment three, aaand there's the wall!

someone once referred to treatment for hodgkin's as 'the marathon treatment', long and drawn out, and the only way to finish is to put one foot in front of the other. well, two full months of tests to get a diagnosis, six months of chemotherapy, followed by radiation...i'd say that's quite the distance. ABVD is relatively 'easy' as far as chemotherapy goes, and it's one of the least toxic treatments (although, it's no cleanse diet either). the challenge? we have to tough it out for six months. that's a long time. every other week for half of a year. followed by radiation - add another month. in case you weren't keeping track...that's a long time.

that's why it's important to not let cancer (or any adversity) control your life. i feel a new ownership of this life i'm living, a responsibility to live better, and to 'take the bull by the horns' in every aspect of life. i suppose that's the perspective you get on life when you have to fight so hard for it. thank you, cancer.

while there's no 'light at the end of the tunnel' for treatment yet, my mid-treatment scan will (hopefully) happen in the next few weeks...likely the most important scan of all scans. so, i'll look forward to that...and once we get there, i'll be close to halfway through this ABVD marathon!

every day is one day closer!

live each day

2009-10-26T10:16:00.010-04:00

since the first day of this journey with cancer, everyone has said to 'take it one day at a time'. i remember, at first, thinking that was impossible...feeling that there was no way i could not think about the future, what my long term survival would be, and focusing on all the 'what if's' of the crazy world of cancer i was about to enter. i realize it's not unusual to focus on all this - cancer is scary and there's such a wealth of information out there about it. i spent days reading everything i could about it. everything i read pointed to only one truth...there is no way to determine the future. if you're thinking this is common sense, you're right, however, once you go through a cancer diagnosis (i, of course, never would wish that for anyone), then we can discuss the usefulness of common sense.

now, three months and three days after that initial discovery of cancer, i think i've finally learned to focus on each day. i, of course, have a lot of work left to do...it's a journey, not a destination.

the future is as uncertain as life with cancer. it's hard to say what will happen tomorrow, or the next day, or five years from now. just as with cancer, there are thousands of statistics that can tell us, with some certainty, the chances for the future.... however, they are just that - chances. we're all individuals. no one can accurately account for individuality. the odds weren't in favor of a healthy, twenty-something getting diagnosed with cancer. and, here i am. so, i say throw chance out the window, and enjoy life.

every day is an opportunity. an opportunity to learn, to appreciate the world, to make a difference, and to live fully. each day will turn into the next, and the future is a reflection of the way we choose to live each one. if we don't take each day and live it fully, our future lacks a critical feature - a life full of lessons, experiences and appreciation. today is wonderful, live it and enjoy it.

low counts...

2009-10-25T13:47:00.004-04:00

so, friday was supposed to be treatment three, but my body wasn't having it, and my blood counts were too low to proceed with treatment. the way it works is: blood is drawn prior to each treatment and your oncologist decides, based on white blood counts, if it's safe to go ahead - if your counts are too low, treatment doesn't happen. ABVD (the chemotherapy i get) is given in cycles...each cycle is two treatments, given on day one and fifteen (two weeks between each one). my oncologist doesn't hold a day fifteen treatment, but will hold a cycle (or a day one).... since this is the start of a new cycle, he's holding it for a week to give my bone marrow time to recover and my white blood cells time to get their act together.

what does this all mean? well, one thing is for sure - my body does not like ABVD. some people, apparently, cruise right through it.... i, on the other hand, require ridiculously expensive meds for nausea and a little jolt to get my bone marrow to produce enough white blood cells in the two week window. add that to the list of things to get me through treatment (current count: four chemotherapy drugs, one anti-nausea IV drip, one steroid IV drip, two types of anti-nausea meds, and numbing cream for the port)...and, this one comes in shots that i have to self administer. fantastic. you'd think after everything i've had done that i'd easily tough this one out, too. no way, i think this may be right up there with bone marrow biopsy on the 'things i do not like' list. but, i'll do what i have to do, and one day i'll stop whining about it.

of course i was quite frustrated that i didn't stack up to the expectations to hold on to my counts for a little longer, and that treatment would, without a hitch, happen every other friday for not a day over six months. i don't take failure of any sort very well. i will, someday, find a way to accept that all this cancer is not something i have any control over. and i'll trust that if everything happens the way it's supposed to, this, too, will work itself out. i'll hold onto the thought (thank you forum friends) that low counts, hair falling out and nausea are a sign that this ABVD stuff is doing what it's supposed to...all out destruction of fast growing cells...and so long as cancer is included in that destruction, i'll hold on to the 'can do' attitude. at least that's one thing i can control.

to: everyone

2009-10-21T08:52:00.009-04:00

dear friends,

i just sat down, coffee in hand, ready to write an eloquent 'thank you' to everyone who's reached out and offered their support. it seems, however, that words are hard to find. i have been incredibly humbled to find myself in this web of support you've all woven so delicately, careful not to leave even a little hole through which i could fall - even at the times i feel most vulnerable. it is, admittedly, a new and unusual position for me to be in as the object of so much support, and i'm still learning to to accept it. dealing with the cancer is easy in comparison to adequately expressing enough thanks for each of you.

there are some things i'll never do well...accepting support easily is one of them. i've spent lots of time in my young adult life as a volunteer or employee in organizations that assist others facing adversity in one way or another. i don't do well on the other side of it - as an indiviual facing adversity. one day i'll figure it all out.

there are few words, none more meaningful or adequate than 'thank you'. thank you for your selflessness, your support, your energy and your thoughts. thank you for showing me how far an act of kindness can go. thank you for the will push forward. thank you for not letting me fall. thank you for your smiles. thank you for understanding that words are not enough. each day that i wake up with a stronger will to live, i will thank each of you.

with adoration, strength and a very sincere 'thank you',
your cancer fighting friend

attitude is everything

2009-10-18T13:56:00.004-04:00

the pessimist sees difficulty in every opportunity. the optimist sees the opportunity in every difficulty.
-winston churchill

disclaimer: you won't appreciate this rant if you're a pessimist.

i understand that everyone's perspective on problems is relative to their own experiences. i also don't expect everyone to have or understand optimism during tough times, especially cancer (i totally understand that cancer sucks), and i will never act as though i have a better way of dealing with things...it's just the way i do it.

what i don't understand is why some individuals consistently choose to focus on the struggles instead of the opportunities...and why these individuals choose to always share their frustration with everyone else. i certainly have days when i feel like everything sucks...i feel sick, i focus on cancer a little more than i'd like to, and i just wish this was not really a reality...but, i never feel like it will last forever, i never feel sorry for myself, like the world's out to get me, or that anyone else should drop everything they're doing to focus on it. why? because i know that everyone has their own struggles. at this point in my life, mine is cancer, and i know the seriousness of it, i just choose not to live life around that. i feel like it's just the hand i've been dealt and i do what i have to do to get through it. just like everyone else.

this is why i think attitude is everything. it's not the size of your struggle, but the way in which you choose to face it. before cancer, i had the typical fear of the "c word" and all that was associated with it. now, while i certainley appreciate the fear, i realize it's not very different than the struggles i faced before...it just requires a little extra will to get through it, but it's the same approach as always...see the opportunity, make the most of it, and move on.

that said, i think everyone should identify their struggles, the emotions that come with it, and embrace it. life throws stuff at us every day that we don't always think we can handle. we can, if we choose to think that way. i wish everyone would realize that...we can face anything that's thrown at us. it's not always easy, but it's not supposed to be. easy things don't challenge us, scare us, and force us to really shake everything up and let it settle again in a new and different way. it's a process. and if you choose the right attitude, it's really quite a wonderful experience.

i never thought paying bills would be exciting...

2009-10-14T09:46:00.002-04:00

the new checks i ordered arrived this week, and i spent all morning paying bills. and i enjoyed every second of it. crazy, isn't it? it just seems so normal, like what every other twenty-something should be doing. i really revel in the times when i can forget about cancer and really just live my life the way everyone else does. i have so much living to do, and it's quite annoying that cancer has thrown such a fork in the road.

that said, i am also very aware that cancer is part of this journey i'm on. the experience is part of who i am, and i have every intention of learning everything i can from it, and then moving on. i am aware that this experience with cancer has already given me a stronger will to live each day. people say that young adults should never have to experience cancer. no, no one should ever have to go through cancer...treatment sucks, and it's scary. but, i feel very fortunate to have this experience as a young adult, as i will have the rest of my life to live with an incredible appreciation for everything. not everyone is so lucky.

one cycle = DONE

2009-10-09T18:36:00.006-04:00

another good day! cancer is really taking a beating here...i continue adding to the tally of good days, and cancer gets fewer and fewer bad days on its tally. cancer chose the wrong opponent, i don't like losing. for the good days, i credit many things...here's the run down on this fantastic day...

first off, my dad came with me (thanks dad) and we went for a bagel and coffee before doing anything else. there are few better ways to start a day. then it was off to the hospital for a pulmonary function test. you all know how i enjoy the funny situations in all this. this was one of those. if you've ever seen office space, picture the guy with the stapler (if you haven't seen it, i suggest you do). he did the tests. it was relatively easy, you sit in a chair, and breathe as hard as you can while they test your lung capacity a few different ways. for one of these tests, you breathe all the way in and hold it...it felt funny, so i asked if i breathed anything in. yes, yes i did. carbon monoxide. seriously? radioactive tracers, toxic gas and radiation...do they really wonder why we have an increased risk of secondary cancers? my lungs were fine going into it, and if i have lung toxicity at some point in this process, i'm blaming that man...and then stealing his stapler.

then off to treatment number two! first awesome thing of the day...i got to use my port! you couldn't possibly be excited about this unless you've been there...i had one little pinch from the needle, then was totally hands free through treatment - it's like the bluetooth device of cancer treatment. also, the best nurse ever (tied with my oncologist's nurse, who i also adore) took care of me. she's seriously amazing...she makes going to treatment sort of exciting, if it wasn't for the fact that it's cancer treatment, it would really be very exciting...i do look forward to seeing those two. the treatment itself was uneventful, and here's to hoping this excessively expensive nausea prescription does what it's supposed to.

that sounds like a good day, huh? it gets better. my oncologist comes in today and the first thing he said was "so do you want some good news?". first of all, i can't even really express enough gratitude for his approach to all this. we all realize cancer is serious, but why focus on that? it's a reality, but i have no reason to think about it every day...thank you to each one of you who also don't focus on any of that. so, the news? well, i had a chest xray after the port was put in to make sure it was in place. my oncologist put the original chest xray next to the one from wednesday...in just one treatment, i've had an excellent response and the mass has decreased in size very quickly! there are no words, really, just hope. lots of it.

one entire cycle is done...only five left!

it's the little things in life...

2009-10-08T09:59:00.007-04:00

in the last few days, i've felt an incredible awareness of the little things each day that i didn't have the same appreciation for prior to having cancer. i like to have the ability to 'thank' cancer for things, and i know that each time i thank cancer for something, i've already beaten it. also, as someone on the forum said every day that we wake up aware that we're alive, we've won. so, wake up every day and be aware of something you're thankful for. some of the little things i am thankful for...

`the transformation of trees in fall
`enjoying a cup of coffee without having anything else to do
`the way dogs seem so happy when they're on a walk
`when my students tell me they like my hair...having no idea i cut it off to make it less noticeable for them when it starts to fall out
`hearing a song on the radio that you've forgotten about
`the innocence with which the students i work for face the world

...the world is full of amazement and little things, look for it.

welcome to the cancer club!

2009-10-07T14:51:00.011-04:00

today was my 'welcome to the cancer club' initiation...i had my port put in...this little plastic thing in my chest will be a daily reminder of cancer. it's alright though, i could use a reminder, i think i forgot a few times this week that i had cancer. for that i thank my students...they're college students, employees, friends, and they have developmental disabilities...but they won't remind you of that last one, they just focus on life. they're such a constant source of inspiration for me...i aspire every day to focus on life instead of it's obstacles, just like they do. they're wonderful.

anyways, the surgery...super easy. for that, i credit the wonderful team that i had today. seriously, a year ago i hated doctors...today, they were wonderful and fun? crazy. thank you for that, cancer. i can never express enough appreciation for doctors that can laugh at the situation. it's the little things.

today's 'cancer is funny' event...i was excited for the end of the usual old IV story (tie a band super tight on your arm, and then just hope the person putting the needle in can find your vein the first time...it gets old) which the port will be the end of. so i cheered a little when the last IV was put in by the pre-op nurse. that would be too dull to be the end of it, though. and, since no one likes a dull end to a story, we wrote a different ending...i get into the operating room, and my IV stops working. seriously? i wasn't sure they could even 'stop working'. the anesthesiologist tells me we'll have to do another IV. no worries, that's easy enough, right? not quite. it took several needle sticks, a few attempts and two doctors to successfully get an IV going. if i had any hesitation left about if a port was the right way to do this cancer business, it's gone. i've got four bruises from IV attempts to remind me of that while the soreness from the surgery wears off. all the while, the most wonderful collection of doctors and nurses enjoying the irony of the situation with me. it's the little things, like their willingness to laugh, that may seem insignificant, but makes all the difference in each little experience with cancer. there was a choice to focus on the little inconvenience, or laugh about it...we chose laughter, and i wouldn't have wanted it any other way.

and, finally, my medical update. i feel excellent! on day five after treatment, i was at work, and on day seven i felt 'normal' again. it's nice to have the first one out of the way, and this time i'll know that the nausea won't last forever (i wasn't so sure last time). i went in to have labs yesterday to check my counts (white blood cells, red blood cells and platelets) before having surgery, and i found out my counts were 'excellent'...yay! that's great news, especially since they still have a few days to come up before treatment two. also exciting, my bone marrow biopsy showed 'no evidence of lymphoma'! that's what we expected, but it's the first 'clean' test i've had done in the last three months, so it's exciting! so, everything is fantastic...off to treatment two on friday, then i'll have an entire cycle out of the way! each day is one day closer to putting this behind me, and every day feels like an accomplishment. it makes me appreciate every day, yet another thing i have to thank cancer for.

the definition of life

2009-10-03T20:23:00.005-04:00

life is a very difficult word to define. in fact, it's so difficult, the dictionary has over thirty definitions. it's a word that has essentially transcended language, and is only defined through our own experiences.

our unique definition of life is the most honest reflection of how we live. one thing i've learned so far is that life is not an amount of time, and we are powerless in determining how long we live. while it's a scary feeling to be out of control, i've learned to focus on the one thing we can control...the way we live.

a cancer diagnosis changes everything. it quickly shifts life into a series of events that determine your future. someone in the cancer community said 'don't let a clean scan stand between you and your life'. it's true. i need to focus on life, and not let test results determine it's quality. there is life outside of cancer.

cancer can take years from life...it cannot take life from years, unless you let it. in the face of something out of my control, i will discover the definition of life.

cognitive dissonance at it's finest...

2009-09-29T19:23:00.005-04:00

cognitive dissonance, simply, is when your thoughts, ideas, values, etc. don't align with one another. in this case, i have had, until now, two very strong thoughts...i feel healthy and i have cancer.

you, apparently, can't think these two things simultaneously during treatment.

there's no way to describe it, and i didn't fully understand it until this weekend. the ugly truth about cancer...if you're not sick at diagnosis, treatment will surely change that. no hint of optimism can carry even this bundle of joy through a weekend of treatment induced misery. it sucks. i can't even color a little positivity into it. it ranks right next to bone marrow biopsy on the list of 'worst things you can go through'. it's terrible, and it's the soundtrack to life for the next six months. however, each treatment is a course of fourteen days...i had three bad days, and i'm looking forward to the next eleven wonderful days. then, i'll do it all over again. why? easy. i'll do whatever i need to so that cancer doesn't win.

i can tell you one thing that's for certain...i will forever appreciate every single day, and will always be aware that on the days i feel healthy, someone, somewhere is feeling sick...and i'll think of that and remember that 'it could be worse'.

1 down, 11 to go!

2009-09-25T20:11:00.003-04:00

it's done! day one of treatment is over! yay! now only eleven more to go.... it's amazing, i woke up today with the most overwhelming sense of excitement - it was the first day that i could work to fight cancer! while there's a lot ahead of me, i'm moving forward now, and it feels wonderful...

i know many of you are wondering what this is all like, so i'll try to pepper in some updates on my experience, although, i don't think too much about the medical side of this...i've got too many lessons to learn...i'll let my doctors handle the details.

the day was relatively easy. the routine is: check in, have blood drawn (to check counts), wait, see the oncologist, head to the treatment room, wait for your drugs to be mixed, get the IV all hooked up, get anti-nausea stuff, the nurse comes and 'pushes' two of my drugs (using a syringe directly into the IV), then a ten minute drip of one, and then the big, long two hour drip with the last one. that's it! the big updates from this appointment...i had my bone marrow biopsy, and i'm not even going to pretend that it wasn't the most excrutiatingly painful thing i've gone through this far - totally worth it though, as it concludes my very thorough pre-treatment tests. once you have those drugs in you, you can't go back, and i'm totally thankful to have so many 'baselines'...i truly trust the hands i'm in with my oncologist, and it feels wonderful to not worry. and, while my oncologist wants to wait on putting in my medi-port (a little port that goes under my skin, attached to a tube that goes into a major vein closer to your heart to save your arms), the nurses have a different plan and want it in as soon as it can be done...so they'll talk it out next week and let me know when that surgery will be. last update, looks like i'm in for six months, not four, of chemotherapy. while it may seem terrible, fear not, with every cycle my chance of it coming back is less, so if six months is what i have to do, i'll do it.

it was my intention to also share my latest incredible cancer driven perspective with you, but, alas, today's events have left me totally exhausted. you'll have to hang on to the edge of your seats, which i expect each of you to actually do...

debunking the cancer myths

2009-09-23T16:55:00.003-04:00

you should know is that cancer is a lot scarier when you don't have it. it sounds totally crazy, but the things we're most afraid of are things we don't understand. once you have cancer, you are forced to accept it into your reality and you can choose to continue living or shy away in fear. one of the most empowering things i've been able to do throughout the last two months is get as much information about my cancer experience as i can. i ask a million questions (sometimes so many i feel bad for the people doing my scans and tests). i'll never be an expert, but i could teach you a few things about hodgkin's...and most of them wouldn't scare you.

in the spirit of fighting fear with fact, let's bust some rumors...

MYTH = everyone with cancer dies
actually, that's true. what isn't true is that everyone with cancer will die from cancer. in fact, according to less than valid internet statistics, it seems that over fifty percent of people with cancer don't die from it. it would be unlikely for me to die from this cancer - i don't try to pretend it's not possible, but if i focused on it, i'd be fearing something that's not likely to happen, like fearing an attack of killer bees. it's possible. anything is.

MYTH = if you have cancer, you are sick
i hate this one. i have cancer...and i'm quite healthy. i just happen to have a large collection of cells in my chest that don't do what they're supposed to. chemotherapy is likely to make me a little less than healthy, but that's because they have to blast my entire body to get rid of this one collection of cells. really uncool. totally necessary.

MYTH = you will catch cancer
only if i sneeze directly on you. seriously. if you think this, i will judge you a little.

MYTH = you can prevent cancer
this one is a little sad, and i feel a little like debbie downer. there are a lot of things you can control...cancer, you cannot. you can avoid smoking, eat a healthy diet, live an active lifestyle, take your vitamins and spin around three times to the left every time you walk through a door, but there are some things we can't control. enjoy life, and control the things you can...everything else will work out like it's supposed to.

finally, a diagnosis!

2009-09-16T19:33:00.006-04:00

today is the day i officially was handed the cancer card...hodgkin's lymphoma (nodular sclerosing, stage 1a, bulky mediastinal, etc...)

for those of you who haven't heard my story, here it is...

in july, i went for an annual physical...nothing too extraordinary except my iron levels weren't going up after taking supplements for several months, and i had a respiratory infection that had lingered since late spring. i've always had a fear of telling doctors what's wrong, but, realizing i was in the presence of the most amazing doctor i've ever encountered (who will always have my unending appreciation), i asked when i could tell her if i thought something was weird. i explained all my odd symptoms, and she explained what she thought was concerning (related to chest symptoms), and told me we could go various routes...one of which was a chest xray, which i knew, intuitively, was what i needed. she warned me that sometimes the problems with chest xrays is they show something that cause concern, and indicate more tests, when it turns out nothing is wrong. well, several scans later, it was confirmed that there was a cause for concern. i have a large chest mass that's pushing my right lung over (just making a cozy little place for itself). i had an inconclusive needle biopsy mid-august, and had to be thoroughly convinced by my doctor to have surgery to get a diagnosis (you all know how stubborn i am, it was quite a fight). surgery was last friday, and diagnosis was today, finally.

i have a relatively rare (although not entirely uncommon in young adults) form of cancer called hodgkin's lymphoma, and to make it even more unusual, my disease is totally localized in my chest (it's usually in the neck, too). the exciting news is that it's one of the most treatable cancers (in fact, they use the word 'cure' quite frequently) and my oncologist says i have above a ninety percent chance of being cured with first line treatment.

onward to treatment! the plan...six cycles of chemotherapy from next friday through february (one cycle = two treatments = one month). re-scan after three cycles to look for cancer activity. after that scan, we'll determine the final end of chemotherapy and the addition of radiation. i'll continue to update on my treatment as it progresses.

"life's challenges are not supposed to paralyze you, they're supposed to help you discover who you are".

who says cancer isn't funny?

2009-09-15T19:50:00.006-04:00

the first thing you need to know about getting cancer is there are about three thousand tests you can be put through, and not actually get a diagnosis. true story. the mass in my chest was found 54 days ago. i've had quite a few blood draws, a few physical exams, a chest xray, two CT scans, a needle biopsy, a PET scan, a mediastinotomy, and a partridge in a pear tree. surely, at this time one would assume i have an actual diagnosis. no, no. that's silly. tomorrow? it's likely. so is another test.

in all seriousness, it's not the end of the world. in fact, i feel oddly excited for treatment to start - and for that i credit the excessive delay in diagnosis. the irony? all the doctors need is ONE cell. it's a tricky little cell, though...it's similar to a "where's waldo" inside this mass (you know, there's a thousand people in that damn park, and waldo's all mixed in with the thousand other people wearing red striped shirts). so, through all this, what's so funny? here it is...the first cancer is funny moment...

the first thing about tests involving radiation...they aren't safe if you are pregnant. as if that wasn't common knowledge, they will ask you a few times if you could be pregnant in hopes that one of the times they ask, you'll trip up and admit that although you haven't had sex in the last nine months, you actually have conceived a child. they take it very seriously - in fact, in the radiology department at maine med, there are posters everywhere that have not been updated since mid-1900's with a picture of a sad looking young woman that ask "is there any chance you could be pregnant? let your doctor know". just in case they forgot to ask you, and you end up like this poster child who, i can only assume, was the result of radiation exposure when her mother was carrying her. apparently, they failed to ask everyone if there's a chance they could be pregnant. the day i had my PET scan (the most radioactive of them all), i was walked into this cold, dark trailer, and was handed off to a tech who was no less than nine months pregnant. she asked me if there was any chance i could be pregnant...i asked her the same thing. i figured someone should give her the warning.

cancer. it's funny. if it's not, it's a less entertaining emotion. you choose. i choose funny...

focus on the accomplisments, not the obstacles that lay ahead...

2009-09-11T17:11:00.003-04:00

today was surgery day...i've been dreading this day since the day they found an abnormality on my chest x-ray. it's safe to say i'm scared to death of any anesthesia, so, needless to say, the totally unconscious, intubated kind was the scariest of them all. now, several hours out of the hospital, it's my favorite day, so far, in this cancer journey. why? because i feel an enormous sense of accomplishment. not only did i hold it together pre-surgery, but i had a very quick recovery from the anesthesia, met some really wonderful people in the hospital, and was allowed to go home shortly after. it's an amazing sense of relief that it's over, and an even better feeling to know i cleared another hurdle in all this.

yes, my greatest obstacle is ahead of me...treatment is going to be tough. i know. however, with each accomplishment throughout the last couple months, i feel more and more confident that i can get through the next one, and the one after that, too. i have to, i don't really have a choice - well, i do, but it's not a very viable option.

so, again i'm fortunate to be able to have a new insight - one of the things i thank cancer for. life throws things in your way that you don't expect all the time. it's not uncommon...luckily, many of these things are minor. i've always found it easier to dissect larger tasks into smaller, easy to accomplish ones. and, a little at time, i work my way towards my end goal. now, with the same tactic, i plan to break my end goal (free of cancer) into little steps. today...surgery. tomorrow...recovery. next week...determine treatment. and so on. each step takes me forward, makes me feel inspired by what i can accomplish, and forces me to face the next one...

the ripple effect

2009-09-06T20:12:00.004-04:00

in 06-07, i served as a leader in the collegiate level of a very large international service organization. it was, perhaps, the most defining experience of my life thus far...it allowed me to step outside my own problems and focus on service to others. i learned the importance of selflessness, and how much of a difference one can make by dedicating themselves to something outside of our own lives, even with the smallest effort.

now, two years later, i am able to realize just how much of a difference each and every small act makes...and i am incredibly fortunate to be surrounded by people who make such an incredible difference in my life every single day by doing something they likely don't think twice about.

i realize, looking back, how easy it was to describe the effect of small acts of kindness. however, the impact of people's efforts was never more real than it is right now. here's what i had to say about it then. all i have to add today is 'thank you'...

Think back to when you were a kid and you would throw rocks into puddles just to watch the ripples echo out from where the rock hit. Then think of a time you tried to throw a larger rock into the puddle, and instead of seeing the ripples you may have anticipated, you watched as much of the water was displaced from the puddle in an abrupt splash. Then, with the desire to watch the ripples again, you continued to only throw small pebbles.

I challenge you to consider how you can make ripples by reaching out and touching the lives of the others that you work with. Making ripples by focusing on the small acts of kindness that make a difference. Often times we get carried away and think that we must do monumental things in order to make a difference and see change. If you’ve ever thought this way, next time it rains, go outside and throw two rocks into a puddle, one large rock and one small pebble. Then watch as the large rock creates a bigger splash that lasts only moments, while the small pebble creates ripples that last much longer.

Marian Wright Edelman once said “We must not, in trying to think about how we can make a big difference, ignore the small daily differences we can make which, over time, add up to big differences that we often cannot foresee.”

When I think of the moments that have left the most lasting impact on me, it is always the small moments. They are not monumental acts; however, they are the moments that have had the most impact on me. These have been the small acts that have given me light in my dull moments and motivated me to push forward.

You, too, can have the same impact on others. I challenge you to take a moment to do something little, just throw the pebble and then step back and watch the ripples, and I promise you will be amazed by the things you can accomplish by just one small act.

unknown and out of control...that's one thing that fits

2009-09-04T18:50:00.005-04:00

i think i believe today, more than ever, that everything happens for a reason, and that our experiences are a physical manifestation of something much bigger than we are. why? because i'm healthy, young, and have cancer. it doesn't really add up (like being obese + eating a lot of sugar = diabetes). thus, i really have to think that there's some other reason for it - and the "at some point your cells in your lymphatic system started to go crazy" doesn't really cut it for me - mainly because i don't understand it. my oncologist told me that if i were a molecular biology major in college, i'd understand it. i majored in psychology. so, here we are, searching for an alternative meaning for me getting cancer. mind you, there will be no references to freud, or my alter-ego...but, if thinking outside the box isn't for you, stay inside and google "histopathology of hodgkin's disease".

everyone finds their own way to cope with adversity. the two things i'm most scared of are those that i have no control over, and those that are unknown. my cancer is both of these things. i have little to no control over how it acts in the course of my lifetime, which is the scariest, and i will attempt to control everything i can to be healthy and live a normal life...but, the rest isn't up to me, and accepting that is a journey in itself. and, i will likely never know the answer to so many of my questions about it. or, rather, the answers will never be sufficient. i can say "my b-cells, at some point, began growing and dying in an atypical pattern and formed a large mass of scar tissue, etc...", but, really, no one knows how this happened...there are no known causes for it, and so it's futile to focus on these things.

in all of this that's unknown and uncontrollable, i find some strength knowing that there's a reason that this crazy little collection of cells is in my chest...i've got something to learn from it. i'm being unwillingly forced to confront my fears, and i think, to some extent, this is just what i needed...

it's like winning some kind of strange, mixed up lottery

2009-08-27T08:02:00.003-04:00

i'm not typically one of those people who gets lucky, you know, like those people who always seem to win raffles...every time they enter something they win, even when the odds are terrible. it seems, though, that while one odd might be against me, another one is certainly in my favor. the chance of getting cancer in the US is about 1 in 5...some odds those are - better chances of getting cancer than winning the lottery. so, that is the odd that has worked against me, which is not good enough to show my luck yet. here goes...of the 20% of the population who will get cancer, only 5% will get some kind of lymphoma (arguably, one of the most treatable cancers)...and still, less than 1% of all cancers will be Hodgkin's lymphoma - before joining the cancer club, my chances of having Hodgkin's lymphoma were about .2% (which are the same as everyone's chances) - and that's why i'm very lucky.

the 'why me' mantra doesn't fit me...i don't feel like a victim, or that something terrible has happened to me because the universe decided that it was time for me to experience sadness. nope. not me. look at the odds...sort of likely i'd get cancer (done), a little less likely that i'd get lymphoma (done, done), and far less likely that i'd get Hodgkin's lymphoma (check)...the most treatable kind of lymphoma, and what they're calling a 'true success story in cancer'. of course no one wishes for cancer, but it happens, just like anything else...and here i am.

everyone keeps telling me that it's OK to feel sad, angry, scared, etc. i keep waiting to feel those things, and i hope i continue waiting. feeling sorry for myself isn't something i'm willing to do. i won't ever say i'm not a little scared...i have cancer, there's a chance that i won't respond well during treatment, i'll have to be mindful of it for the rest of my life, and people die every day from cancer. yes, it's a scary world. however, i knew from the first day that if i let it consume me, and let it take over, i had already lost the battle.

i don't like losing. perhaps that's why i feel so lucky to have won the 'good kind of cancer' lottery, because i finally won something i have no control over. bittersweet, and very, very real.

optimism in cancer? really?

2009-08-19T20:04:00.006-04:00

really, optimism. i truly believe that there is positive in every single situation. i've believed that way for quite a while now, and my diagnosis of cancer simply means that i have to learn to see the positive in a very difficult time. they say that the hardest of times really challenge your beliefs...bring it on.

the first thing you should know is that this is genuine optimism. this is not my attempt at coping with my diagnosis by fabricating an essence of positivity that is unnatural to me. i can also promise that there will be times that i will lose sight of my optimism, i'm not perfect, and seeing the glass half full is a journey, not a destination. it's also a choice, and i choose to always see the opportunity, to see how i can grow, and how i can help other people do the same.

most importantly, this blog serves a couple purposes, or at least i intend for it to. first, it's a place for me to share my story, and to express my sincere optimism about my journey, and the challenges that i face in striving to maintain a positive attitude. second, it's a way for those i care about to be able to follow my experience without having to worry about their reactions to it...where there are no expectations for them to respond, and for them to know i want to share it with them, but don't expect anything in return. lastly, it's my hope that someone, somewhere, will benefit from reading this, and realize that there truly is optimism in everything, even cancer, you just have to be willing to see it.