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...

mr. t & me

while i hate the humor in this video, it is the only hodgkin's PSA available and i wanted to share some high level information on the disease/treatment. among other things, it features a few famous hodgkin's patients. however, it omits my personal favorite: mr. t. when asked in an interview for his words of hodgkin's wisdom, he appropriately responded: “i pity the fool who don’t fight back.” gotta love mr. t...

we received some good news at my oncology appointment yesterday; much to my delight, we learned that radiation is probably off the table as a required treatment. i'm aware of the long-term risks of radition (secondary cancers, etc.) and am thrilled to hear that i can avoid that exposure. the oncologist explained that the PET scan at the two month mark will determine whether i need two or four more months of chemo (four or six months, total). worst case scenario would still involve the stem cell transplant, but is very unlikely. as with anything else in life, i'm glad to have enough information to prepare for the worst but am certainly expecting the best!

a good day to put in the past

needless to say, i didn't emerge victorious from the bone marrow biopsy discussion. although the chances of cancer being in my bone marrow are slim (like 0.5%), i can appreciate that we had to confirm. in the event that i need to go down the stem cell transplant path, understanding the status of my pre-treatment bone marrow was imperative. so, i tried my best (although not a very graceful 'best' today) to roll with the punches. i'm glad to put one more (rather daunting) thing behind me.

i also decided to get ahead of my impending hair loss today and cut it off. i felt as though watching short pieces of hair fall out wouldn't be as troubling as long pieces of hair and decided to chop it. i anticipate that once i notice it starting to fall out, i will go through one more cut to get it super short before i finally just buzz it all.

voila:

cross your fingers

throughout this experience so far, there hasn't been anything that i've dreaded or been fearful of... except for the possibility of a bone marrow biopsy! i made the mistake of reading something online that provided an account of a police officer who had been shot in the line of duty, explaining that he'd choose being shot again over a bone marrow biopsy any day. great...

when i met with the oncologist yesterday and learned that a bone marrow transplant wasn't on the table as a potential treatment, i breathed a huge sigh of relief. until... i received a call from the cancer center today, asking me if i could come in tomorrow for one. i responded that i could... but didn't want to. :) we agreed that i'd meet with the oncologist first to discuss this unexpected test, then move forward in the afternoon if necessary.

if she ordered the biopsy, i'm sure it's necessary, but i appreciate her humoring me just the same. not having a firm appointment for one tomorrow has provided me with a glimmer of hope that we can 'just skip it' ;) so keep your fingers crossed. if i do have to be subject to the equivalent of a gun shot wound to the hip tomorrow, at least they didn't give me much time to agonize over it. one way or another, it'll be over tomorrow... and that is a good thing!

nodular sclerosing classical hodgkin's lymphoma, stage 2a

thankfully, we now have a final diagnosis and game plan. as suspected, i was diagnosed with nodular sclerosing classical hodgkin's lymphoma, stage 2a. the diagnosis is stage 2 based on the presence of tumors in both my mediastinum and supraclavicular regions.

i will have two months of chemo (starting on tuesday), followed by a PET scan. assuming the scan at the two month mark shows the cancer to be in complete remission, i will have two more months of chemo, some radiation (am hoping that's negotiable) and will be healthy! the alternate approach would include a stem cell transplant.

unfortunately, one of my blood tests showed that one factor (erythrocyte sedimentation rate) was elevated, which caused me to be classified as a 'poor prognosis' patient. i am certainly out to beat that prognosis and am hanging on to the 90% survival rate statistic! i met with the thoracic surgeon today, too; i am now bandage-free and my scars are all healing well. my insides are about to catch up with my outsides starting tuesday. ;)

good news: 2 of 2!

my biopsy results were (finally) returned today, revealing nodular sclerosing classical hodgkin's lymphoma. phew! i will meet with the oncologist tomorrow to review the final diagnosis and to establish a treatment plan. more to come following that appointment... happy monday!

the 'a' team (six strong)

most of you know these outstanding people, but i wanted to give a shout out to the 'a' team: my amazing family. although we've only just scratched the surface of this journey, the support and help my family has provided me already has been unbelievable... from holding my hand, to washing my hair :), to helping me make difficult decisions.  from the first moment we received troubling news, they have been by my side, constantly reminding me that i'm not facing this alone.

when we beat this, the success will be every bit theirs, as it will be mine. in addition to being my family, they are the most amazing individuals i know, my best friends, favorite people to spend time with, and my inspiration... i am the luckiest girl in the world.

my mom & dad

brother, tim, & fiancee, erica

and, last but not least, peter!

no definitive news today. since the biopsy (still in process) revealed hodgkin's and (potentially) non-hodgkin's cells, i went in for more blood work yesterday to provide additional data in support of a final diagnosis. the first test showed that my 'sed rate' was elevated (pointing towards hodgkin's), while the second showed that my 'ldh' count was normal (high would have pointed towards non-hodgkin's)... a little glimmer of hope that, although complex, the biopsy results may be in line with my wishes.

the end of my love affair with artificial sweetener

i realize that most people respond to cancer news with 'why me?' the question that i can't stop asking is 'what did i do that caused this?' across our huge extended family there is no history of cancer.... at all. leaving me to wonder if i have introduced some environmental root cause. while i continue to hear that i haven't done anything in particular to trigger this, i partially expect the answer to come back to my artificial sweetener habits.

while there is apparently no possible correlation, i cannot stand the thought of putting anything like this in my body again. i could down diet coke with the best of them and have tried every possible format of splenda, my sweetener of choice. i have splenda in my home, desk, wallet, and even in my car. during my time in the U.K., we talked often about bottomless diet cokes being one of the things we missed most about the U.S. of A. those days for me are over. thankfully water and ice are also up there on the top of my consumption list... and rising!

the oncologist called from her vacation yesterday to inform me that my biopsy is in the good hands of a hematopathologist at yale, working to nail the diagnosis through some additional testing. unfortunately, it doesn't seem to be the hodgkin's slam dunk reading i was hoping for, but is still in process. i will have final results sometime later this week. stay tuned...

everyone deserves a summer vacation

... at least that's what i keep trying to remind myself. :)

i was hoping to get pathology results back on friday. when i hadn't heard anything yet on friday by 4pm, i called the oncologist's office and learned that she had left early for her week of vacation. i realize the lab may be a little backed up too with people taking more time off over these nicer summer weeks.

i'm choosing to believe the lab delay is associated with these external factors and is not indicative of a more complicated diagnosis. i understand that the identification of reed-sternberg cells in the biopsy is a quick hodgkin's indicator. (reminder: hodgkin's is what i'm hoping for...our best-case scenario!)

peter often expresses frustration around the fact that as the closing attorney he has many clients preparing to close in a given week; to each client their individual closing (new home, business, etc.) is the absolute most important thing in their life, and they expect immediate attention and hand-holding each step of the way. today, i've become that impatient client who can't believe someone could possibly have a summer vacation or anything else to do right now. ;)

i'm hoping those pathologists are burning the midnight oil this weekend (identifying lots of reed-sternberg cells!) and getting a report ready for us to receive on monday or tuesday. in the meantime, i'm enjoying: feeling more comfortable, a beautiful morning on bristol harbor with my husband, looking forward to visits with friends this afternoon and my family this evening, and being able to finally take a shower tomorrow!