January 31, 2010

the journey of a cancer warrior

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.

January 27, 2010

9 down, 3 to go!

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.

January 22, 2010

words of wisdom

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!

January 14, 2010

four cycles = DONE!

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!

January 8, 2010

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

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...

January 4, 2010

bad days

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.