the 'difficult patient'

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'

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...

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...

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'

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.

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...

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...