December 30, 2009
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.
December 26, 2009
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.
December 22, 2009
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!
December 14, 2009
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!
December 6, 2009
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.
November 30, 2009
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."
November 26, 2009
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.
November 18, 2009
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.
November 7, 2009
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.
November 4, 2009
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!
October 26, 2009
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.
October 25, 2009
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.
October 21, 2009
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
October 18, 2009
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.
October 14, 2009
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.
October 9, 2009
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!
October 8, 2009
`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.
October 7, 2009
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.
October 3, 2009
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.
September 29, 2009
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'.
September 25, 2009
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...
September 23, 2009
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.
September 16, 2009
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".
September 15, 2009
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...
September 11, 2009
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...
September 6, 2009
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.