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!

one hurdle behind us

both of my procedures went as planned and i am happy to have the invasive part of this behind me.

the thoracic surgeon was successful in removing a whole 'golf ball-sized' malignant lymph node on wednesday. this was larger than they were hoping for and should help with pathology. (apparently the architecture of the node provides information about the type of cancer, growth pattern, etc.) the vascular surgeon installed the port in my chest yesterday with no problems. i was pleased to learn that he is a neighbor of mine at stone harbour... the thought of bumping into me at the pool, marina, parking garage, etc. down the road should have provided increased motivation to be careful as ever. ;)

i'm swollen, bruised, in some pain and having some trouble moving around but taking pain meds and laying low. i'm super thankful for my family around to stay by my side and help with the little (and big) things. i'm still hoping to get pathology news today, otherwise early next week... in the meantime comfort will be my objective for the next few days. i hope you all have a good weekend; it looks gorgeous outside... enjoy! :)

game time!

i finished my last day of work today. this party gets started tomorrow at 7:30am with the biopsy. i was given the choice of accessing the lymphnodes in my chest through an incision along the base of my neck or through my right side. given that the risks and benefits were comparable, i opted for the right side in hopes of walking away from this with a few fewer visible scars. on thursday at noon i will have a second procedure to install a port in my chest for easy chemo access over the next several months.  the thoracic surgeon estimated i'd be in the hospital for a few days while the chest tube does its job and my lung reinflates, etc. i'm hoping to have pathology results on friday... keep your fingers crossed!

good news: 1 of 2

i received my PET scan results today, which confirmed that the cancer is only in my chest/neck and has not spread below my diaphragm... great news!

'one learns to itch where one can scratch'

today i'm radioactive for a PET scan and have to spend some time in solitary confinement. thankfully, my ipod and blackberry are allowed, giving me a good excuse to draft an update and figured i'd start with the back story... in march, while on a girls trip with my virginia tech friends, i started with this chronic itch. i chalked it up as a seasonal allergy that kicked in due to some new allergen in the florida air. while that itch followed me for the next four months, i spent many sleepless nights and frustrated days waiting for allergy season to end. when it did, and my itch didn't, i began appointments with allergists/dermatologists. at the urging of my brilliant, insightful  and medically-inclined mom, i got a second opinion from a dermatologist who ordered a chest x-ray and the rest is history...


i am hoping the next week will reveal a) that this cancer is contained in my chest above my diaphragm, and b) that the suspicion of hodgkin's is confirmed by pathology. i understand that hodgkin's will be a much easier road for me than the other lymphoma alternatives. my radioactive day today will confirm wish a; biopsy next wednesday will confirm wish b.

'we cannot control the wind, but we have the power to adjust the sails'

so, i never thought i'd have a blog; then again, i never thought i'd be facing cancer either. i realize that communication will be important yet challenging for me over the coming weeks/months. the industrial engineer in me likes the idea of an efficient 'pull' system for people to get updates (as opposed to 'push'ing emails on you unnecessarily). moreover, i know i'll need to be in touch with my friends and family to gain lift from your support.

i feel incredibly grateful to have so many amazing people in my corner.... a winning corner, by the way! i know I will beat this; not only because i'm determined to, but because the odds and modern science are in my favor. i always feel so fortunate to have the most amazing husband & family in the world; i am more grateful than ever to have them on my team right now.

as many of you know, peter and i recently started taking sailing lessons. living on bristol harbour, we watch sail boats all season long through our bedroom window. my best friend, beth, shared this quote with me at the start of this journey last week and it seemed a fitting blog name.

if you're reading this, thank you for all of the support you have provided me, peter and my family. i am eternally grateful!