pinch me

i often have those 'pinch me' moments (several times each week, actually) where i'm overcome with appreciation for this incredible gift of life. today i found myself wincing... at the feeling of an almost-five month old's death grip on a handful of my hair when this 'pinch me' moment occurred: i'm here. with hair. and a perfect little baby. and have officially 'graduated' from my four years of hodgkin's follow up scans and x-rays! for those of you who fumble across this blog as i did when i was starting treatment, scanning for signs of hope that life will go on embedded in the stories of others... it can! and for any conversation you may have now with your medical team about fertility risks, know that there is hope. we - on the first try, no less - were blessed with an amazing, strong, healthy, perfect baby boy! keep the faith. :)

'finish line' scan snapshot

two years later, still the most grateful girl going... out of the woods, gettin busy living and never looking back!

the bright side (an epilogue, of sorts)

i am cautiously hopeful that this will be a story with an ending... and a happy one, at that. while i will continue to update this blog from time to time, i feel compelled to post some sort of conclusion as i close this chapter of my life. although this story may end, in the words of my oncologist, 'cancer is forever'. of course she's alluding to the forever impact it will have on my health and the risks associated with all that my body endured through treatment. however, cancer has impacted me in other ways that i hope will also be with me forever.

cancer has brought many gifts into my life: it has afforded me invaluable quality time with my family. it has brought me closer than ever to my husband. it has reconnected me with old friends. it has made me more mindful of what i put in and on my body and how my actions affect other people. it has caused me to become more involved in my community. it has brought new meaning to the words love, loyalty and hope. it has reinforced my values and reminded me of the words i try to live by:

love. laugh. listen. put family first. be a forever friend. live and let live. be present.
remember that you always have the power to make a good decision, even in a bad situation.
seize opportunities. choose your words wisely. be prepared for the worst, but expect the best. 
express thanks. be true to yourself. get busy living.

i realize there will be challenges associated with the new perspective cancer has afforded me; facing my own mortality only to be catapulted back into a world where some people make big deals out of 'little things' will seem frustrating to me. i will struggle to strike balance between keeping the big picture in mind while juggling the conflicting priorities of day to day life. i will have to bite my tongue every time i see someone smoking a cigarette, not wearing a seat belt, or under-appreciating life. however, these implications are far offset by the blazing bright side.

while cancer hasn't 'changed' me, per se, the characteristics i possessed previously have now been touched with a bolder shade of color. i am a brighter and more vivid degree of appreciative, sentimental, engaged, positive and alive. perhaps the greatest gift cancer has given me is a lens through which i will see the rest of my life.... a lens of gratitude, of beauty and of inspiration. perhaps the rest of my life will be better for this experience. perhaps i should be thanking cancer for blessing me with a gift so early in my life that few people ever have the chance to appreciate.

 
10 doctors, 5 incisions, 50+ leg scars, 8 tattoos and 7 long months later, we're on the other side. we 'beat' this. i surely could not have survived this alone. the words 'thank you' can't even touch the magnitude of my appreciation. i am so fortunate to have each of you in my life, and i am eternally grateful for all you have done to support me over the last several months. here's to the end of a chapter and the beginning of the rest of this amazing life...

packing it in

i'm thrilled to finally be packing it in and am preparing to head back to 'normal life' (aka, work) on the 28th. i'm cleaning house of all the 'cancer gear' we've accumulated over the past seven months. i was originally excited at the thought of trashing it all, however the looming three year recurrence risk period caused me to opt for packing it up and storing it (for now). so, i've happily collected prescription bottles, wigs, scarfs, hats, surgical masks, a plethora of nausea aids, and a massive three-ring binder containing my 500+ page medical record and packed up a large storage container to reside in my basement... hopefully never to be reopened! on day seven of a vegetable detox, i'm also working on cleaning myself up and putting all this toxicity in my past, even if only mentally drawing a line in the sand.

my last day of radiation was as eventful as it could have been. everything from parking to traffic went terribly wrong. the radiation machine broke, causing us to wait several hours until another dana farber radiation department could fit me in. with a migraine, i curled up on the waiting room couch with my eyes closed until my name was called. on top of not feeling so hot, i found myself to be an emotional wreck that day. as i laid on the radiation table, it seemed as though the past seven months flashed before my eyes. the first day of this crusade felt like ages ago and the thought of really being at the end seemed so surreal. after 15 of 16 radiation radiation fields were complete, the therapist came in to move the heavy, metal plate aligned to zap the lymph node at the base of my heart for the last step of this final treatment. she left the room to return to her monitor saying, 'last one and the rest of your life will be perfect.' talk about a tear-inducing literal and proverbial shot to the heart... and what a promise, huh? :) i came home late that night to flowers and an applauding standing ovation from my husband when i opened the door. from his front row seat, this probably has been quite a show... and one on which i'm elated to see the final curtain fall!

my two cents for the newly diagnosed

when i was first diagnosed, i certainly appreciated the sage wisdom and words of inspiration that were bestowed upon me by friends, family and perfect strangers. harder to come by, though, were the words of practical advice. early on, a former colleague suggested i drink as much water as i could the day before chemo, advising that 'it will make a big difference'. i clung to those tangible bits of advice that i could actually incorporate along this journey. for those of you heading down a similar path in the coming months, i have tried to capture a few of my own lessons learned (for what they are worth!) from the perspective of the many hats we wear.

admin: with all of the appointments, phone numbers and bills to process, being organized was definitely key for me. i kept a tidy, little cancer notebook that i brought with me to all of my appointments. i tried my best to capture all of the important points the oncologists made, especially the ones i didn't completely understand at the time. i'd take time at the end of the appointment to repeat back what i thought i heard, in my own words, to ensure i absolutely got the message. for those of you who, like me, try to be considerate of other people's time, be selfish. he or she can afford the extra minutes to recap and ensure you understand the information clearly.

interviewer: before each appointment i would sit down and list all of the questions i had for the oncologists. i found that during the appointment so many topics would be covered, it was easy to lose track of that question that seemed so important to me the night before. i asked a lot of questions and certainly felt like the oncologists would have rolled their eyes if that were even remotely appropriate.

student: do your homework... and while you may not have the knowledge to do it yourself (i sure didn't!), ask for help. i was fortunate to have a friend doing a post-doc in the cancer world. he helped me to gather journal articles on some points of treatment that were concerning to me. i wanted to see data and understand my odds. i believe that knowledge is power and felt most comfortable obtaining objective information on the decisions we were making regarding my treatment. 

optimist: during my very first day of chemo i sat across from an older man who spouted lots of negativity and cynicism. i overheard him talking about everything from how miserable he felt with sores in his throat from chemo, to his belief that cancer was going to kill him. talk about an overwhelming orientation on my first day of treatment. while studies provide conflicting conclusions about the relationship between attitude and outcome, block out the haters and expect to win. after all, it can't hurt, right?

nudist: when i chose a career path years ago, i never imagined i'd spend so much time topless in front of groups of young men in my lifetime! welcome to the world of radiation therapy at a teaching hospital. there's no room for modesty in cancer care. the quicker you get over it, the more comfortable you will be.

navigator: in my journey, being prepared for the worst and at the helm meant completing a health care proxy and living will. walking into the hospital the morning of surgery and handing over those documents was sobering, to say the least. in addition to the real planning, i found it important to find little ways to regain control. for me, it was everything from choosing to cut my hair before cancer took it away from me, to finding humor in something that wanted to be so heavy, to exercising during treatment in an effort to feel like i earned that inevitable feeling of fatigue.

patient: my experiences with doctors throughout this ordeal have been polarizing. this journey started in july of 2009 with a missed diagnosis by a radiologist who overlooked what to others (in retrospect) seemed to be a very clear start of lymphoma. perhaps he was low on sleep, or coffee, or motivation to remember that there is a person on the other side of each scan he reads. while the thought alone of being diagnosed with cancer in 2009 just before getting married both stresses and bums me out, my body would certainly have been able to avoid a lot of the long-term damage it has now sustained. the bookend on the other end of my journey is my amazing primary oncologist. she is compassionate, patient, wise, and brings a refreshing perspective and sense of humor to our appointments. the thought of visiting with her every couple months for the next few years is something i may actually look forward to! one of the challenges on this path is trying to strike a very delicate balance between being your own best advocate and trusting your doctors. in a world with so many misdiagnosed conditions and rushed decisions, it seems important to get second opinions, do your own research and ask questions. yet, there comes a time where you need believe that you selected the best doctor and plan of treatment and trust.... trust that you have made good decisions and, more importantly, trust the doctors who are operating on, caring for and advising you.

citizen: ...of the cancer community, that is. i wasn't comfortable with the whole support group idea; it was hard for me to feel comfortable expressing concerns about my own experiences when i think about the possibility of sitting alongside someone with a terminal diagnosis. (boy, did i have it good!) similarly, it's frustrating to hear survivorship glamorized by someone who had a small tumor or freckle removed and was quickly declared cancer-free without enduring any sort of treatment. for me, individual relationships helped tremendously. i became fast-friends with another hodgkin's patient i met in the radiation waiting room; talking about our similar experiences has been incredibly rewarding. i also reconnected with a school-mate of mine who was six months ahead of me on his hodgkin's journey. he quickly became a good source of information on what to expect, along with one of my greatest cheerleaders when i needed a boost of encouragement. the cancer community is one you'd never hope to join, but one in which you will find amazingly helpful and supportive people should you ever find yourself there. this community has tremendous insight to share and has taught me that being strong and vulnerable aren't mutually exclusive.

(re)mission accomplished!

 

in this case, a picture is definitely worth a thousand words! my imaging whiz of a brother pulled these before and after shots of my chest from PET scans. (in case my cropping makes them hard to follow, those are my raised arms and head at the top.)

'what kinda gone are we talkin' 'bout here?'

leave it to country music to embed itself in my mind, even on occasions such as these. whenever oncologists talk about these tumors being 'gone', this song jumps into my mind... and sticks around for awhile. but really, what kind of gone are we talking about? i have been very reluctant to throw the r-word around ('remission'....shhh!), understanding how fleeting it can be for lymphoma and, immaturely, not wanting to speak too soon and jinx myself.

i was under the impression that hodgkin's was one of the few cancers that could be 'cured'. so, i very proudly asked my oncologist if i would now be declared 'cured' of this cancer. she responded, 'if i was standing at your funeral confirming that you died of something else, then you'd be considered cured, but not until then.' since i'm not planning to do that anytime soon, i'll have to get more comfortable with my stage of 'complete response'. (it sounds does sound nice though, doesn't it!?)

the recurrence rates for hodgkin's are highest in the three years following treatment, then drop off to almost nothing. so, i'll be looking over my shoulder for the next three years, hoping and praying that this cancer doesn't return. if it does, i'd be going down the stem cell transplant path, and the odds of success there are definitely not comforting. so, i'll be focusing on doing (almost) everything right and keeping my fingers crossed until february 2014!

i'm participating in a study at dana farber cancer institute, piloted on new lymphoma survivors, aimed at instituting survivorship care plans. this plan will not only summarize all of the toxins and abuse my body has been exposed to on one handy sheet that can be shared with health care providers in the future, but it will explain all the risks of treatment and the precautions i should take. the phd-candidate who was working hard to sell participation (in hopes of making me patient 30 of required 30 in the study) explained, 'for instance, if you weren't aware that you can't scuba dive due to the amount of bleomycin you received, that could be lethal'. wait... no scuba diving?! while that wasn't on my to-do list, it also wasn't something that had ever been explained to me. i was well prepared to worry about my heart and lungs forever due to all they have endured during chemo and radiation, but am eager to get my hands on this plan in a couple of weeks to understand guidelines that will help stave off recurrence, secondary cancers and other health problems. i am hopeful that adhering to this plan, being closely monitored and channeling all possible good luck for the next three years will make sure this cancer is gone 'for the rest of my doggone life'!

like no tanning bed i've ever seen

... although the resulting warm, red burn is pretty much the same. this machine, the 'BW6', and i have spent some quality time together over the last month (radiating 16 fields every day in my neck and chest, to be precise). while I won't exactly miss having my face masking-taped to a table each day, i concur that radiation has been an absolute walk in the park compared to the good ol' days of ABVD!

this should be the easy part, right?

as i approach the end of treatment, i feel as though this journey has come full circle for me. i'm finding myself feeling as emotional now as i did at the start. perhaps i've been so focused on keeping my head down and in the game, looking to the next treatment, appointment, step, that i am finally now lifting my head back up and taking it all in. is this really almost over? i sure hope so.

while i've always been that friend who tears up upon hearing the first note of processional music at a wedding or during the end of a cheesy movie, i feel as though this experience has aged me emotionally and made me even more of a sap. ('is that even possible?' i know what you're thinking!) ;) i easily shed tears listening to the life story of the new friend i met five minutes earlier in the radiation waiting room, or, most recently, sharing the good news that treatment is almost over with my concerned neighbors at the gym and dry cleaners. this should be happy news, i know, but something about it seems very surreal.

the most frightening part of this journey for me happened right at the beginning. the week between receiving the phone call that changed my life and undergoing surgery, i would wake up in the middle of night consumed with whatever i was dreaming and found myself completely forgetting that my life had changed. i would startle myself with the realization that i'd just been diagnosed with cancer. i'd sit up in bed, look around my bedroom in the dark and think to myself 'is that real? did i dream this? is this really happening?' with no physical manifestation of this diagnosis, no new pain, no scars yet, i had no way to confirm. it would take me minutes to convince myself that, yes, this really was happening. and, for several nights in a row, i would lay awake for hours until i cried myself back to sleep. it was the most devastating feeling i've ever experienced; i was heartbroken for my parents, scared for my husband's future and overwhelmed with the vast unknown that was about to become my life.

the past few nights, i've found myself facing that familiar feeling; i lay awake wondering 'is this nightmare really almost over?' and, although my emotional reaction is the same, the feeling i experience when i realize the answer is 'yes' is a world away from devastated. :)

the light(s) at the end of the tunnel

now that i'm on the home stretch, i feel as though i can finally see the light at the end of this tunnel. raytheon, i love you, but i cannot allow that light to be your blazing florescent bulbs back in the office! many young survivors i have met talk about how deflating it is to work so hard battling this disease for months only to... return to work?! hmmm. while i will happily return to work at the end of february, i'm focusing on other bright, sparkling lights at the end of this tunnel right now.

i'm snowed in again, camping out by dana farber for a couple of nights. i rode the elevator at the hospital this morning with another patient who came in for treatment on cross-country skis. wow. only the truly determined made it in past the foot of fresh snow today. i've happily spent my down time here planning several upcoming celebrations and purchased three plane tickets in the past 24 hours. i'm looking forward to a long weekend in new york next month celebrating this victory with my dearest college friends, a weekend in siesta key with my girlfriends from grad school, bachelorette parties and weddings for two of my best friends, among others... i've sure got a lot of living to do this year!

first, though, is a long-overdue vacation with peter. we spent much time contemplating what the perfect trip would be at the end of this journey. we weighed the limitations: 'no sunbathing' per my radiation oncologist and 'nothing out of the country' per my cleverly cautious husband, who wants to make sure we're near a comparable hospital in the event that something goes awry post-treatment. we settled on arizona, which will be pleasantly warm (but not a 'sunbathing'-type trip) and is home to my favorite place: sedona. while i lived in scottsdale for a bit when i worked for northrop grumman, peter has never been, and i'm excited to share a place that's so special to me with him.

as i was forewarned, radiation has succeeded in burning the heck out of my throat over the past few weeks. swallowing anything has become a challenge. my old pal lidocaine returned to save the day, numbing my throat enough to make it possible to drink and eat soup. i was cautioned that it will only get worse for the next two weeks, so i'm bracing myself to muscle through to the finish line by focusing on the light at the end of the tunnel... a few short weeks from now my throat will definitely be burning, but hopefully over a celebratory margarita in the shade with my husband. :)

guess who's got hair?!

...this girl! :)

things i won't miss about cancer, volume 2

1. waiting in exam rooms with my husband ;)
every ounce of patience seems to flee from peter's body the moment we are left in an exam room to wait. this day we could see the doctor standing outside the door casually polishing off a package of twizzlers with perceived disregard for the fact that he was running nearly two hours behind schedule. there wouldn't have been enough candy bars or newspapers in the world to distract my peter's mounting frustration!

2. bizarre hair loss

now that my eyebrows are growing back, i can fully appreciate the cruel joke the universe played on me the day that i texted this picture, along with a desperate plea for help, to my best friend. my left eyebrow wiped off all at once, leaving me to decide what to do with (what was left of) my right eyebrow. after several hours of contemplation (dare i rock one eyebrow?), the decision was made for me when it also wiped off on its own. phew.

3. trays of chemo
of all things that could be delivered to you on a silver platter, huh? :) at least that's what i thought each time i saw this tray approaching. while it has been a little more than a month since i finished chemo, i can clearly remember the feeling of dread associated with the arrival of this pile of syringes and IV bags packaged in their own individual hazmat baggies. (hopefully) this is a feeling i will now only relive through photos!

you inspire me

nothing can stop me... except a little blizzard :)

well, needless to say, day one of radiation didn't happen as planned on monday. my dad and i tried to beat the storm, getting into boston on sunday afternoon, only to find out sunday night that my treatment was cancelled. after a couple of nights at the hotel adjacent to dana farber, we came home with one treatment under my belt. now starts the trips to boston for radiation everyday (monday - friday) for the next several weeks. i've been told everything from 'expect radiation to hit you harder than chemo did' to 'radiation is a piece of cake after chemo'. i have a good feeling about this and am optimistic that the latter will be true.

the anticipated short term side effects include sore throat, dry mouth, changes in taste, skin irritation/burn, swelling, decreased blood count and, of course, my old friend fatigue. the long term side effects include thyroid dysfunction, dental cavities, heart disease, 'electric shock sensation on bending the neck' (!?) and secondary cancers. for those of you dealing with radiation on the horizon, you have reason to be hopeful that your list of side effects is likely a lot shorter than this; my set of radiation fields extends from the base of my teeth to the middle of my rib cage, apparently lengthening the list quite a bit. although the long term side effects worry me, my philosophy is to attack the devil i know, do everything i can to decrease my chances of meeting the devils i don't (yet) know and adjust the sails if they present themselves down the road. right now i'm thankful to just be able to see down the road!

the unveiling

after much thought and planning, i'm happy to share The FLY Foundation with you! i'm excited and grateful to have the opportunity to make a small difference in the lives of local young people who are struggling with the financial implications of a cancer diagnosis. you will certainly hear more from me once we have our first event planned this spring. great thanks to my fellow raytheon ninjas for selecting our non-profit for their annual charitable donation... what a way for us to get started!

no christmas lights here!

after my initial PET scan in july, i was told that my chest 'lit up like a christmas tree'. well, christmas tree no more! while my PET scan last week wasn't as clear of a slam dunk as my PET scan in october, it was still a clean report. one new node above my right lung was illuminated, but i was assured it was likely due to normal lymph activity associated with cold season, as opposed to cancerous activity. we'll get a second read from the dana farber crew next week.

i am now officially de-ported (thanks, martha!). the fact that i left the recovery room and walked directly into a plastic surgeon's office should tell you how amazing my port scar looks. thankfully, aesthetic concerns still reside at the bottom of my priority list right now.

while i've imposed my own assignments for these final two months out of work, including loads of exercise and cancer-fighting foods in an effort to make myself more alkaline, the only new assignment from my oncologist was to 'make sure i don't get pregnant for the next three years'. the bright side of this direction is that peter and i can plan to stay in our beloved condo for longer than we originally intended.

and, on that note, we received very exciting news that my brother and sister-in-law, tim and erica, are expecting a baby this summer!!! talk about efficient newlyweds... :)

actions speak louder than words

many of you have asked me what a port is, how it works, etc. so, i'm going to take one for the team (you know, the team with the big, shiny C on the jersey) and provide a moment of port education.

essentially, a little pocket was cut into my chest and this device about the diameter of a quarter was inserted. it will typically remain there for the duration of treatment and be accessed for chemo administration (the alternative to having a IV inserted in your arm/hand for each treatment). the line runs into the superior vena cava, just upstream of the right atrium of the heart. each time the port needs to be accessed, a needle is inserted in my chest (in the center of the port) providing access for both blood to be drawn and drugs to be injected. my port looks like this one but is purple instead of gray. how cute. :)

now that i'm done with chemo, what happens with this port? the cancer community recommends leaving it in for awhile 'if you're not in a rush to have it removed'. why, you ask (i did). 'just in case.' hmmmm. although they won't say it, i was quick to sense that 'just in case' was code for relapse, more chemo, etc, etc.

after giving it some serious thought, i decided that i am in a rush!  i'm in a rush to get myself back together and put this behind me. i think that if i'm working on believing with my whole heart and soul that this cancer won't be back, my actions better say so too. so... (drum roll)... tomorrow i'm having my port removed. although i'm not excited about any sort of surgery, this is the type that's a lot easier to swallow!

'hey eyebrows, guess what? chemo's over.'

today i am mourning the complete and sudden loss of my eyebrows. apparently they didn't receive this important message yet. the sparse brows i had left literally wiped off my face yesterday on my bath towel. bummer. i actually took this a lot harder than i did parting with my head hair... perhaps due to the shock of it all or the delayed timing (i thought we were done with the hair loss bit), but most likely because i look a lot scarier without eyebrows than i do without hair. oh well. another day, another chemo casualty. it really is the gift that keeps on giving. while i am a proponent of shading in light brows, i'm not the type to draw on an eyebrow where one doesn't exist. so, this post is mostly a warning to you, my friends and family, that i will look a little creepy for awhile. but this, too, shall pass... right? i sure hope so.

optimism in the most unexpected places

this time last year i bought tickets to the 2010 army-navy game for peter's birthday. we took the quick flight to philly on friday for 'america's game'. despite a few twists in the road (we're getting good at those), we had a great weekend celebrating the big 3-1!

when i wasn't experiencing the post-chemo surge of energy i expected recently, i started to suspect that my immune system's still shot... now i'm pretty much convinced. after an eye infection last week (one of several reasons i'm wishing my eyebrows would fill back in!), i managed to catch some sort of nasty stomach virus during our weekend trip. unfortunately, we had to miss our flight back and stay an extra night until i could (literally) stomach a trip through the airport and friendly sky. despite my good intentions, wearing a mask on the airplane didn't make me impervious to all germs a weekend away would introduce. lesson learned.

i'm choosing to believe it was no coincidence that i sat behind this navy fan at the game. while my illness this weekend caused my PET scan results appointment to be postponed, i will show up on thursday 'expecting to win'. :)

my quest to be unremarkable

we spend our whole lives striving to produce the best work products, attain the best exam scores, be the best friends, employees, leaders, family members we can... perhaps in hopes of being classified as 'remarkable'. i quickly learned that, when it comes to cancer, this is a label you definitely don't want to receive! upon review of my last PET scan results in october, confusing statements like 'this scan doesn't impress me' and 'there's nothing remarkable about these images' left me initially wondering what i had just heard... was that good or bad news? i head back today for another restaging PET scan and, when i meet with my oncologist on monday to review the results, i'm hoping to learn that i am completely unremarkable and haven't impressed her one single bit. :)

my radiation planning appointment last week was partially successful. i came home with six tattoos (which are really nothing more than large, navy blue freckles) to align me for the fields they plan to radiate in my chest/neck. when i return on the 27th, i'll receive six more tattoos for the controversial 'cardiac node' at the base of my heart. although they will be with me forever, i certainly have far worse scars at this point... and i assure you that after a bone marrow biopsy, tattoos tickle.

i opted to receive the daily radiation at dana farber / brigham & women's in boston and am happy to be avoiding an extended stay in houston. the waiting room at the brigham offers live harp music, along with a broad array of snacks. after that shameless plug, many of you kindly offered to make the drive with me on a day or two. if your offers still stand, there are a couple of weeks in january that i'm trying to fill with drivers!

'beating cancer'

when i think of things i've hoped to accomplish in my life, beating cancer has certainly never been one of them. then again, maybe none of us really beat cancer. maybe science beats cancer. maybe our compassionate oncologists beat cancer. maybe drugs, photons and money beat cancer. maybe the researchers who lock up office doors at the end of a solid day's work, feeling disconnected from the human side of medicine, are really the ones who beat cancer.

maybe all we do is wait. we wait for the calendar page to turn. we wait to tick that list of dreaded treatments off our to-do lists. we wait to be called into an exam room and for our chemo IVs to finish. we wait for the day we can pass a mirror and actually recognize ourselves again. we wait to hear definitively that we're done waiting, all while the medical world gets better at beating cancer for the next person to walk in our shoes.

we become adept at waiting and, in the process, at quieting our minds, at appreciating the little things, at living in the moment. maybe when beating cancer becomes an accomplishment that sits firmly in the past tense, the rest of our lives will be better for it... happier, richer, funnier, more beautiful. it's hard to imagine life getting any better than it was B.C. (before cancer) but perhaps that will be the best side effect of all. :)

putting on my turn signal

after a holiday weekend filled with family and my dearest (college) friends, i'm preparing to make the turn from chemo to radiation on this cancer treatment super-highway. i suspect that the radiation part of this journey will be a smoother and much more enjoyable ride. my radiation planning appointment is on wednesday, and while i really don't know what to expect, i do know that tattoos are part of the plan. while the words 'first tattoo' probably conjure up images of a pastel-colored butterfly, animated shamrock or family coat of arms, i suspect mine will look more like a pattern of distant stars.

i can proudly place a big, black check mark alongside 'chemo round 8'. my body is finding new ways to tell me its done with chemo; round 8 added a fever and chills to the potpourri of side effects. beth accompanied me to treatment, and i assure you that our matching shades of dusty rose were completely uncoordinated!

gratitude

as i head back to chemo today and prepare for another week of feeling green, i want to acknowledge thanksgiving a bit early.

it is my favorite holiday and always has been. why? it's not overcome with the frenzy of gifts. it's not (completely) over-commercialized. but, mostly because it's an entire day dedicated to gratitude and family. on this thanksgiving, my usual list of things to be thankful for has gotten a whole lot longer. where to start... my life? absolutely. my amazing family and friends? no doubt!

this thanksgiving, i'm grateful to have treatment options; so many people don't. i'm grateful to be beating this disease; so many people aren't. i've been fortunate to tie into a community of twenty-somethings battling cancer. many, like me, maintain blogs. many are fighting battles infinitely harder than mine. over the past few months i've seen more than one blog grow silent, only to be updated by a parent or sibling who posts the somber news that cancer won... and a young person closed the book on their life long before they hoped to. for these people, i will appreciate every moment of life that much more; i assure you that they would have.

i am especially grateful for you, my family and friends, this thanksgiving. for you are the people who teach me to love, laugh, learn, listen... and these, i believe, are the greatest survival skills of all.

a random assortment of little (and big) things i appreciate every day:
family. laughter. equality. the ocean. the spirit of america (and those who defend it). good music with better lyrics. photographs. appropriately-placed apostrophes. efficiency. excellence. a solid handshake. people who care about people. insightful idioms. integrity. teachers. tolerance. life!

two things happen when you look sickly...

1) society becomes much more courteous
i get a lot more doors held for me in public places and smiles from strangers as i'm going through life hair-less and with a constant dark halo around my eyes. on one hand, i think it's wonderful that people can be so courteous and compassionate towards perfect strangers. on the other hand, i think it's about time for the world to realize that most people are facing some struggle that they don't necessarily wear on their sleeve (or in my case, head). a novel idea: let's treat everyone we meet as if they were bald, scarred, sick, or, better yet... the way we want to be treated.

2) everyone tells you that 'you look great'
c'mon, laugh; you know you have said it! i do hope you remember to tell me how great i look great every time i see you when all this is over. ;)

'where are all the young people?'

this is a question i asked in shock after my first few chemo trips revealed only senior patients. ''young' for us is late-40s, early-50s', explained my nurse, deana. an article in the wall street journal yesterday touched on this gap: 'too young for cancer' and demanding action - young adults, aged 19-39, make up less than 10% of all cancer patients, but this age group is the least likely to survive...

thankfully, young adults with cancer are an active group, albeit small. many of their websites and resources have been very helpful to me... from fertility statistics to message boards and slogans that provide a little humor in the midst of something otherwise not-so-funny. (i'm well on my way to earning an 'eyebrows are for losers' t-shirt of my own.) :)

so, to fill the gap, we bring our own young people to the chemo lounge! this week i was fortunate to have my beautiful mom with me, along with a visit from peter.

 

inspiration just when i need it... today, chemo round 7

marathon time!

sunday is the big day for peter and his running mate, TK! i'm thankful that i feel well enough to join them, along with TK's wife and peter's family, for the weekend in NYC. peter and i have found a lot of inspiration in each other's journeys over the past few months. additionally, watching him run for hours every weekend made laying in bed feeling rotten seem a little less painful. if he could bring himself to make it through that fourth hour of running on any given saturday, i could surely make it through another hour of bad television. :)

i am tremendously grateful for all of the donations you made to this cause; together we raised $18,563.40 for the american cancer society! that's $18,563.40 towards valuable cancer research. $18,563.40 towards the type of studies that provided me enough data to make informed decisions about my own treatment. $18,563.40 towards support for cancer patients who don't have the family, friends and resources i am so fortunate to have. $18,563.40 closer to a cure...

knowledge is power... even when it comes to lip gloss!

several months before the cancer shenanigans started, i read an article that caused me to start thinking about what i put on my skin every day. much to peter's chagrin, what i learned led me to replace almost all of the products we use regularly in our home... lotion, detergent, soap, etc. (the fact that i even spent the amount of time i did on this crusade should have tipped me off that something might have been wrong! little did i know then...)

considering skin is our largest organ and we pay so much attention to what we put in our bodies, i think that what we put on our bodies should probably get a little more press. my friend, beth, read a similar article that led her to host a rather informative non-toxic makeup party, where we learned about the skin deep database. interestingly, fragrance is considered a trade secret and FDA regulations allow manufacturers to list 'fragrance' alone on a list of ingredients, masking the synthetic chemical compounds in our products (many of which are outlawed in europe). this website provides a list of known ingredients in many consumer products and rates the product's toxicity on a simple 1-10 scale. no need to rush off and become a paranoid consumer, but i found this website informative... maybe you will too.

winning the war but losing the battle

while i'm beyond happy that we're winning the big-picture war on this cancer, i can't help but feel like i'm losing the daily battle with chemo. my bone marrow is officially on strike, halting blood cell production. thankfully, my husband has gotten good at administering neupogen vaccines.

i've learned first-hand that the phenomenon known as 'chemo brain' is very real. no lies, it does makes me want to cry a little bit when i struggle to recall a word, remember why i walked into the kitchen or do simple math to calculate a tip on a restaurant bill. i'm hopeful that these little cognitive lapses will pass once chemo ends and my body purges itself of all these toxins.

while nausea will forever be my biggest chemo complaint, 'anticipatory nausea' has become quite a nag in and of itself. on a good day, the smell of isopropyl alcohol alone is enough to cause me to gag, apparently reminding me of chemo on some subconscious level. i've confiscated peter's alcohol-laced hand sanitizer and replaced it with an alcohol-free alternative, making rides in his car much more tolerable for me.

from the start, i was prepared to lose my hair but really hoped i wouldn't lose my eyebrows and lashes. unfortunately, they've started to thin... hopefully not the beginning of the end of those features. the real upside of this deal (if there is one... i'm digging deep here!) is that i've got the most flawless armpits in town. :)

simply put, nothing about chemo is fun. my body, mind and spirit will be infinitely joyful when it is over!

running up the score

so, the PET scan revealed that we're winning this game. now it's time to run up the score! the question is how? and by how much? there are many different schools of thought... stanford, the germans, dana farber... each with their own philosophy and protocol on what treatment and how much treatment is just enough to beat this cancer, but not so much as to evoke the corresponding heart and lung damage that accompanies chemo or the risk of secondary cancers and heart disease that accompanies radiation. while i'm thrilled we're ahead, i'm not taking a moment for granted, realizing we've got a long way to go and some tough decisions to make.

yesterday, my mom, peter and i spent the day at dana farber meeting with the medical oncologist and radiation oncologist. despite the fact that chemo is working, both believe that radiation is a necessary part of my game plan. my classification as a 'poor prognosis' or 'unfavorable' patient affects my path forward more than i expected it would. the radiation oncologist explained that the high number of tumors or cancer sites caused him to classify me as 'unfavorable', more so than my elevated SED rate. while a 'favorable' patient may win this war with chemo alone, studies show that radiation is a necessary treatment for 'unfavorable' patients to prevent recurrence.

my radiation oncologist teaches at harvard med school and practices at the brigham / dana farber. i like data and he preceded his recommendation with lots of it. he explained that the french & belgians are in the midst of a study of patients just like me, who had two months of chemo followed by a negative PET scan. the study aimed to compare two groups... one that went on to receive radiation, the other chemo alone (the exact decision we are trying to make). he explained that, as recently as one month ago, researchers were forced to shut down the arm of the study treating 'unfavorable' patients with chemo alone because the recurrence rate in these patients rose too high. his estimation is that my chances of beating this disease with chemo alone are about 65%, rising to about 85% with chemo and radiation. if the cancer recurs, i would require a stem cell transplant; my odds of that treatment working would be about 50%. high stakes when it comes to your own survival...

while we have other opinions to gather, the facts convinced me that, despite the concerning side effects, radiation has merit in helping me prevent this cancer from recurring. my local oncologist originally wanted to avoid it, explaining how many of her former young hodgkin's patients are now her current older breast cancer patients, thanks to radiation. we'll discuss with her on monday and, hopefully, move a little closer to a decision. the radiation oncologist explained that one of the cancer sites is dangerously close to my heart, causing him to recommend that i have the 3.5 weeks of radiation performed at either yale or harvard facilities if we go down this road. the perk of radiation is that i'll get away with less chemo (4 vs. 6 months), which may allow me to avoid the long term side effects of too much chemo (permanent numbness in hands and feet, in addition to cardiac and pulmonary toxicity).

i asked a question yesterday that allowed me to put this all in perspective:

if i lived in another time/place and didn't detect this cancer, or elected not to treat it, what would have happened to me?

     cancer would have killed me in 18-24 months.

how? (yes, i wanted to know.)

     likely due to the spread of cancer to my lungs and pneumonia taking my life.


every day i think of a million things i have to be thankful for... living in the 21st century is now pretty high on that list. thank you, science, for saving my life.

things i won't miss about cancer, volume 1

i decided i'd start a series of photos of things i won't miss about cancer. :) when i'm living through some of my least favorite moments at least it will give me a reason to smile and snap a photo, right?

1. drinking this

my propensity for drinking large volumes of liquid came in handy when facing this rival. the technician advised that he'd allow me 45 minutes to drink each of two required bottles. perhaps we each have our own philosophy on consuming gross things, but i channelled my inner college freshman and opted for the quick chug. the look of horror on his face when he saw how quickly i polished off two bottles of barium cocktail truly indicates how nasty this stuff is. i heard that some hospitals offer this in flavors... something to consider when selecting a health care provider!

2. hieroglyphics... on me

the thoracic surgeon made these markings on my neck prior to my operation back in july. could this have been discernible to anyone?!

an eventful wedding and one more uneventful chemo treatment down

tim & erica's wedding was a wonderful success. they both looked perfect and everything went off without a hitch. a great time was had by all! :) i succeeded in totally wiping myself out, going to bed at 5:30 the next day! that's what i get for a full weekend of fun and my first drink in three months.

yesterday, tim & erica landed in costa rica and i landed my sorry butt back in the chemo recliner. my dear friend (and neighbor), george, was kind enough to accompany me to give my family a chance to recover from the weekend. we had some laughs and made the best of the situation, as only george can do.

the next few weeks will be busy gathering opinions from the oncologists and radiation oncologists on next steps following my PET scan. i am optimistic that this path may not require radiation and am preparing myself for another 4 months of chemo. we shall see... my mom & i have also tentatively booked a visit to md anderson cancer center in houston in november for a third opinion from the nation's best. in the meantime, i'll be working to firm up my appointments at dana farber and recover from this week's infusion.

me & groom-to-be at rehearsal dinner

tim & erica at wedding's end

many reasons to celebrate!!!

my PET scan was negative! woo hoo! while i won't know exactly what this means for my treatment plan until we review with the oncologists here and at dana farber, this was the best possible outcome. after a week of being really worried and down in the dumps, i have a lot of smiling and celebrating to do. i have the rest of my life to worry about cancer and only a few days to celebrate my little brother's wedding!

4 down, restaging time

every engineer knows that a minimum of three historical data points is generally required to ascertain a trend. i was cautioned that the effects of chemo on my body would be cumulative and, with the exception of my first treatment (which was in a league of its own!), i can now attest to the fact that this trend does exist. i seem to feel a little bit ickier each time we go through this drill, and the chemo has certainly done its job in knocking down my white blood cells, leaving my count this week even lower than the first concerning dip. so, we're back to the daily neupogen injections.  i've been feeling pinchy twinges of pain in my chest over the past couple weeks and was told that this sensation is the actual cancer decomposing, which is kind of cool... if pain can be cool. :)

i'm planning a playlist for my PET scan next tuesday. the scan process requires you to sit in isolation in a radioactive safe of sorts for two hours or so while you're body's loading up on tracer, then lay 'perfectly still' for about an hour while the scan is conducted (intermingled with a couple of breaks to chug bottles of barium cocktail... yum). staying still is harder than you'd think! the one advantage i have this time around is that my itch is gone; being told you can't move for an hour with ridiculous, lymphoma itching skin sounded like some sort of POW torture. i'm putting a lot of hope into this restaging and want to enter armed with lots of positive music to avoid sliding into any sort of contemplative state of mind while in solitary confinement. suggestions of songs that motivate, inspire and/or rock you?

approaching a fork in the road...

hard to believe it's here already, but tomorrow is chemo round 4. this is the last round before the highly-anticipated PET scan, which will determine my path forward. i was happy to enjoy a couple good days of fresh air, the ocean and laughter before i'm back in hibernation this week.

the hair cut was a success, in that my head seems to be relatively symmetrical with no unexpected mikhail gorbachev-style markings! for your entertainment: a photo we snapped mid-haircut... my 'take that, cancer' face and mohawk. ;) i'll spare you photos of the finished product, as we'll all be seeing more of my bald head than we'd like for the next year or so!

day 1 of 365 (or so)

...in my new life without hair, that is. i decided this morning that today is the day i'll say 'so long' to what hair i have left. i've been amazed over the past few weeks by how much hair there is on a human head (approximately 100,000 strands, says wikipedia)! each day i felt as though i could make a small wig with the hair on my pillow and the bathroom floor alone, yet i still had quite a bit hanging on for awhile.

i'm putting my head in the hands of two reliable barbers: peter and my friend, ashlea, who is visiting from arkansas this week. by making an event of it, i'm hoping it will feel a little less somber. i may force them to have a drink or two, since i can't... and you really can't get this cut wrong. ;)

while i can't be certain of the color or texture of my new hair when it returns, i have been assured that it will grow back. it will likely be curly/wavy and will hopefully still be brown. unfortunately, it may take 2-3 months after the end of chemo for it to start growing and another 3-4 months for it to fill in, leaving me with about a full hair-less year if i finish chemo in february, as planned.

in an effort to look at the bright side (usually my role!), my husband (who shaves his head each morning in the shower) very sweetly suggested that i may like it more than i expect because it will be easy and save me a lot of time on hair drying. :) something tells me that drying my hair each day won't bother me so much anymore...

this fine day last year!

i can't believe i've been married for a year... and what a year it's been. not a day passes that i don't pinch myself and feel thankful for being married to such an absolutely amazing man who makes life so fulfilling. a few weeks ago,  peter and i talked about the fact that we've both spent the last year more excited about being married than we spent the year prior being excited about getting married... and our wedding was the most perfect day ever. peter's sister, amanda, turned our wedding vows into a beautiful piece for our home as an anniversary gift.   

with this ring, i promise to:
always appreciate the experiences, laughter and time we share together;
never allow you take love too lightly or life too seriously;
encourage your independence and celebrate your spirit;

care for you in times of sickness and health.

while i didn't intend to exercise the 'sickness' part of our vows so quickly, my husband certainly rose to the occasion in a major way. little did he know this day last year that he was buying a lemon. ;) we planned to be at the ritz-carlton kapalua in maui next week celebrating this milestone but, due to this crazy twist in the road, we'll be here enjoying the next best thing: being together at our home in bristol.

cancer and i coexisted pretty well together... until chemo came along

as most of you know, i went to the walk-in in july 2009 for some random chest pain that occurred following a business trip to france. to rule out the possibility of a blood clot from flying, i had a CT scan with nothing observed and was sent home. after my CT scan in july 2010 revealed these tumors, we revisited my july 2009 scan and realized that (in retrospect) the cancer had started growing at that point and was likely the cause of my discomfort.

it's amazing to think that from july 2009 - july 2010 this cancer and i coexisted so peacefully (with the exception of my raging skin). i got married with cancer. i took this cancer on some great trips... australia, france, florida, to name a few. we went to endless parties and celebrations together. we learned to sail together. we spent a lot of time at work together. we created countless memories with family and friends together. little did i know i had these masses tagging along for a good part of 2009 and 2010. i never felt sick... in fact i didn't have a single cold during this period! i miraculously avoided the night sweats, fatigue, rib pain and other symptoms that come along with lymphoma. i'd like to credit my body for being strong enough to stave off illness and keep this cancer at bay for so long.

chemo, on the other hand, is a different story. it's funny how the process of getting better is what makes you feel and look sick. if late 2009 and early 2010 were as amazing as they were with tumors in tow, i can't wait for late 2011 and early 2012. this cancer will miss out on some good times!!

thank you!

i didn't fully appreciate how many loyal readers there are out there until the box of fifty bracelets vanished within hours. :) thankfully, they have sent me another hundred... let me know if there is anyone i missed! based on the statistical tracker, roughly 200 of you visit this blog every day (well, monday through friday, dipping to about 75 on the weekends).

thank you... for following along, for posting comments (i love reading them), and most of all, for caring. while i started this blog for practical reasons in an effort to make communicating easier for me, in some weird way it makes me feel a lot less alone going through something that can seem very isolating. i'm so touched each day when i see comments posted and still find both my email and snail-mail boxes full of messages and cards. i expected that your signs of support would taper off once the initial shock of all this passed. i anticipated that the crowd would clear and i'd be here alone pushing through each treatment with a small circle of family and friends who'd be there with me 'til the end. i can't tell you how much your love and support means to me. thanks for caring enough to check in and read this silly little blog each day. i'm so grateful to have such amazing friends and family who care so much.

also, thanks to those of you who way-too-generously contributed to peter's marathon fund. amazingly, our team is now the top fundraiser and he far exceeded his personal fundraising goal. you guys rock!

tomorrow i'm off to chemo round three. my brother, tim, is my 'lucky' chemo buddy and driver this round... an experience, to say the least. you see a lot in the chemo lounge: a lot of entertaining people, a lot of very sick people, a lot of 'price is right' fans watching (loudly) from their personal TVs. something you won't experience much of there is privacy. i'm thankful to have company with me for each visit. round three feels a little brighter for me knowing now that these crazy drugs are doing their job. bring it on, chemo!

'i will fight'

well, september is lymphoma awareness month. for those of you who have been along for the ride, we've certainly gotten outselves a crash course in lymphoma recently! when my mom and i sat in the final 'smart' dermatologist's office learning all of the possible causes of my chronic itch and heard lymphoma on the list of (unlikely) possibilities, i didn't know the first thing about it. over the past few months i have gone from completely lymphoma-ignorant to knowing more about this disease than i ever hoped.

today i got a cool gift in the mail for lymphoma awareness month: a box of 'i will fight' bracelets in the official lymphoma color of lime green. these bracelets first came out of the dear jack foundation with lyrics 'i will fight' from andrew mcmahon's (alleged) favorite song he's ever written, something corporate's watch the sky. in support of young adult leukemia & lymphoma research, i will proudly don an 'i will fight' bracelet... perhaps until i am done fighting.

i have a box of fifty looking for a good home. i'd certainly be proud seeing little green signs of support on the wrists of others. :) if you're interested, shoot me an email with your address and i'll drop you one in the mail.

comedy of errors

sometimes i feel like my medical adventures could easily be a sitcom. over the past week, i had to receive daily injections from home, which led to some funny situations... including peter practicing on a lemon and our friend, paul, giving me a shot in a parked car. yesterday, though, surely topped both of those moments.

after having some trouble breathing (a side effect of the B in ABVD), i had to get a CT scan. for those of you who have had a CT scan, you can picture laying in the cylinder facing the ceiling, with the technicians in a separate room watching the exam through a glass window. i had an IV hooked up to my port to inject dye for the exam and my arms over my head. mid-exam i heard a pop, realized the IV disassembled from the port and felt the IV of dye spraying all over my chest and neck. in a panic that the dye was toxic and now all over me, i started waving my arms frantically, then knocking (banging) on the machine over my head in hopes of getting the attention of the girl behind the glass. i realized later that, although in different rooms, there was a microphone over my head and i could have easily called for help. i'm sure the view (and sound) of me slamming the (very expensive) imaging equipment was priceless. :)

to make matters worse, i was having an off day, and this additional chaos was enough to cause me to start crying... certainly not because i was upset about the dye catastrophe, but was just tired of being at the hospital, getting poked and prodded and not feeling like myself. the poor technician looked completely horrified that, not only had the test fallen apart and i punched her machine, but now thought she had made me cry. amidst tears i manage to utter that i wasn't upset about the dye but just 'tired of having cancer'. mature, i know. :) thankfully (for all of us!), i'm back to normal today... realizing that i have a million things to be thankful for and need to pull up my bootstraps because we've got a long way to go!

we got good news yesterday... three pieces, actually:
1) the CT scan of my lungs was negative
2) my white blood cell count is back up (following all of the awesome vaccine-giving from my family and friends!)
3) although we 'weren't supposed to peek' at yesterday's CT scan to check the cancer, the oncologist reported that the scan showed my tumors are shrinking... already! yes!! if that's not a reason to keep my chin up, i don't know what is. :)

spoke too soon

no sooner did i hit 'post' on my update yesterday than i started to notice my legs hurting and hair on my pillow. oh, well. both are signs that these drugs are working, which is a good thing! i certainly am not declaring this official hair loss yet; but when i noticed wet hair all over my hand following a shower, i realized it was time for my final hair cut . if you look quick, you might think this is a photo of your eleven year-old nephew, but it's just me. ;)

2 down, 10 to go

since the shortest treatment plan of 8 rounds of chemo (alone) isn't on the table anymore, i decided i'd mentally prepare myself for the longest road to avoid disappointment... leaving me with 10 rounds of chemo to go (or 6 rounds plus radiation).

my dad joined me for chemo this week and treatment took over five hours with all of the waiting, etc. unfortunately, my blood work showed that my white blood cell count was 'critically low'. if it remains at this level, unfortunately i will be denied my next chemo treatment, delaying completion of this process. i understand that while chemotherapy directly targets cancer cells, it also decreases bone marrow activity resulting in lowered blood cell counts within the body.  i am now receiving a daily injection to stimulate my bone marrow to develop more white blood cells. the side effect is that the injection can cause bone pain; thankfully, i haven't experienced that yet. i'll go back on tuesday for my blood to be retested to see how the injections are working. in the meantime, i was told to be extra careful about germs (avoiding public places, unnecessary contact with other people, etc.)

on a positive note, emend has changed my world!! this week was much more tolerable without the ridiculous nausea. (thank you, merck!) ...and, i still have my hair. :)

the calm before the storm

despite the absence of sun, swimming and alcohol (which are all off limits for me now), i had a great weekend enjoying the beautiful weather. we spent saturday at the pool, where i found a shady seat under the pergola adjacent to a seat in the bright sun for peter... the best of both worlds! below is the view from my pool chair; it was nice to see so much boat traffic and sunshine. we also celebrated my best friend, beth's, engagement at a party thrown by her parents on saturday night. she will be married this weekend next year and will be an absolutely beautiful bride. by the time that maid of honor gig rolls around, i will hopefully have this ordeal behind me and maybe even a full head of hair (?) one can only hope!

it's back to the chemo recliner for me tomorrow. this should be a big week. on the upside, i enter this week equipped with a new anti-nausea drug (emend), which i'm hoping will help make my chemo hangover a little more tolerable. on the downside, my hair may start to fall out as early as tuesday based on the experiences of other ABVD patients. (however, it may also happen as late as the middle of the following week.) i thought of starting a lottery to pick the 'big day' to make this process a little more interactive for me, then realized that might be a little morbid for the rest of you. ;)

if round 2 is anything like round 1, i may be incommunicado for awhile; but, no news is good news. i'll just be pushing through... one treatment closer to the end of this road!

for real? yes...

you know i'm working really hard to make sure i have all possible diversions in place when i suggested an ACC fantasy football league to my hokie friends over dinner last night. now it's on! needless to say, i've never done this before. any suggestions on a name for my team? i'll contemplate it over bloodwork and an oncology appointment this morning. ;)

maybe i should play the lottery

based upon cases diagnosed during 2003-2007, the age-adjusted incidence rate for hodgkin's lymphoma is 2.7 per 100,000 women per year. of that 0.0027% population, approximately 5% exhibited the presentation of the disease i had (itching alone)... equating this situation to odds of 0.000135%. wow. maybe i should buy a powerball ticket this month. :)

our visit with the medical oncologist at dana farber was successful yesterday. unfortunately, he sees merit in considering radiation treatment following chemo. he explained that radiation may decrease my risk of recurrence by as much as 10%. the feasibility of radiation will depend on an appointment with a radiation oncologist at dana farber following the first two months of chemo. he will review my PET scan and determine if they can reach the cancer with radiation without risking contact with my heart and other 'important' things in that neighborhood. so, we'll see what happens. regardless, we're moving forward with two months of chemo. at that point, we'll do the PET scan and decide whether i'm in for either a) another four months of chemo, or b) another two months of chemo plus radiation. decisions, decisions!

1 down, 7 (or 11) to go

well, chemo was all i imagined it to be... and more. ;) my dad and peter accompanied me for treatment. we were there for about four hours, which included a lot of test doses, checks, double checks and waiting... anticlimactic, to say the least. i sat back in a recliner, while my chemo nurse, deana, had all the hard work to do. the sight alone of chemo being administered makes me worry about its long term effects on my body. deana wears a full suit including special gloves and a face shield (reminiscent of a welder's mask) to administer the treatment. my port worked, which was good news, saving the veins in my arms. the port (in my chest) is used to both draw blood and administer IVs during the chemo process.

the chemo regimen i am on is called ABVD (adriamycin, bleomycin, vinblastine & dacarbazine). it is administered in 'cycles' (30 days in duration), which includes two chemo treatments (which i've been calling 'rounds', not at all official nomenclature) on days 1 and 15 of the cycle. so, i'm in for either 4 cycles (4 months, equal to 8 chemo rounds) or 6 cycles (6 months, equal to 12 chemo rounds) total, pending the outcome of my PET scan after cycle 2.

apparently different chemo regimens have different side effects. lucky for me, two of my drugs are severe nausea-inducing agents. while nausea and hair loss were part of what i was prepared for, the other (less 'glamorous') side effects include mouth sores, fevers, jaw pain, a heightened sense of smell and 'phantom smells'. as i arrived home from the hospital, i began to smell seafood everywhere and on everyone who entered the house. yuck! perhaps my next round of chemo will find my super-human sense of smell honing in on a more pleasant odor than seafood... which i used to actually enjoy eating, but may never be able to look at the same again.  the upside of going through this chemo treatment so many times is that we can use each iteration to try different combinations of anti-nausea medications until we find something that works best. i was cautioned that as the nausea subsides, extreme fatigue would pick up... however, a pretty good trade, if you asked me!

the long-term side effects of ABVD are the scary ones... including risks of cardiac and pulmonary toxicity, along with increased risk of leukemia and secondary cancers. luckily, infertility is not on that list, based on the limited studies available. (thanks to my amazing researcher of a friend, dr. zac cooper!)

i was thrilled that the nausea tidal wave passed yesterday, just in time for my brother's fiancee, erica's, bridal shower. i wouldn't have missed it for anything in the world and was the proudest maid of honor to see her showered with love from so many friends and family. tomorrow we're off to dana farber. i'll have some bloodwork and another doctor's appointment later in the week, and then i'll get back in the saddle on monday for round two.

i'm sorry for all of the calls and emails i didn't return last week. i basically hibernated, disconnecting myself from the world, fresh air and all the other things i usually love. thank god for my family, who will all be honorary nurses before this is over! and to answer the question everyone has been asking... unfortunately round one didn't cure my itch (yet) but it has improved some. i have my fingers crossed that round two will do the trick!

'you will beat this'

to everyone who has sent me an email, card, text message or exchanged a simple fist-bump in the hall uttering those four simple words... thank you. to say i've been touched is an understatement. i have felt overwhelmingly supported by all of you - my blog-readers ;), family, friends and colleagues - who remind me that, yes, i will beat this. although i believe it with my whole heart, hearing those four words doesn't get old.

my first round of chemo starts today at 9am and i'm ready as ever to get this show on the road. after several weeks of diagnostic efforts, i'm happy to be rounding the corner to treating (beating!) this cancer. as i head into this first chemo cycle, i acknowledge this road will be hard... and long... but in the end, i will beat this. while i can't promise my updates over the next four (or six) months will always be as bright as my pre-chemo words have been, i can promise you one thing: they will be true.

in the weeks ahead, when i grow tired of working to get well, i will look back and remember how positive and certain i feel at this moment that i will beat this... but please don't stop reminding me.

on behalf of peter...

Dear Friends:
Running has taught me a lot. I have run a half marathon in the pouring rain. I have run a five mile race on New Year’s Day, during which the actual temperature was 7°F. I have run a seven mile trail race, wrought with rocks, roots, and muddy ascents, in 90° heat.

Despite the respective challenges posed in each of the scenarios referenced above, I, somehow, crossed the finish line in each instance. Running has taught me that, despite all the physical and mental challenges surrounding all of us, we CAN persevere in any situation. As long as your feet keep moving, you get there, somehow. This lesson should be paramount to all of us as we traverse the sometimes rocky path known as life.

I have never attempted a marathon, because I did not know where I would find the time to train properly. However, I now feel that I have been “called to arms,” by Julie’s Hodgkin's Lymphoma diagnosis. I feel helpless, because all I can offer is “support,” this supple, slippery concept that is required in many different instances, but cannot be truly defined. I feel like I too, should have to do something that will require focus and mental and physical toughness. I feel like Julie’s positive attitude and focus on the finish line embodies the true spirit of the marathon. I feel compelled to embody that spirit, because her disease will not allow such a physical embodiment.

It is with this beautiful girl in mind that I present to you Team Julie. Julie is like no other woman I have ever met. If you are receiving this letter, you, more than likely, can appreciate that sentiment. Her spirit, even in these toughest of times, is unmatched. She exudes positivity and poise in all situations. Julie is confident that we can complete the marathon known as cancer treatment, so I, too, am confident that I can complete a marathon of my own.

I ask for your support in my quest to run the 2010 New York City Marathon in an effort to raise funds for the American Cancer Society to find a cure for this disease that will, no doubt, leave an indelible mark on our life together and the lives of millions of other American families. We are fortunate to have the means and family support to handle this situation effectively. However, there are many who are not as fortunate, and, for those folks, we run. We run to show them that anything is possible. We run to show them that there is always a finish line. We run to embody Julie’s “we can” attitude.

Peter
http://main.acsevents.org/goto/marathonteamjulie

'just find the horizon; i promise you it's not as far as you think'

for the past 5+ years, my favorite musician has unequivocally been andrew mcmahon. formerly of something corporate, he created jack's mannequin and their first album, everything in transit, has been playing on my ipod, car stereo and in my mind ever since.

andrew was diagnosed with a leukemia in 2005 and has been a huge advocate for the leukemia & lymphoma society. his fight was hard, but he emerged victorious following a bone marrow transplant from his sister, katie. following his diagnosis, he began filming himself and the documentary dear jack was released last year chronicling his journey.

it seems ironic that my favorite music is crafted by a fellow blood cancer patient and that so many of his songs talk about this fight (most notably, the anthem swim). music is a big part of my life and will undoubtedly be a source of comfort and inspiration over the next several months. my jack's playlists will certainly be part of my journey...