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!
28 October 2010
19 October 2010
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.
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.
17 October 2010
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?!
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!
the thoracic surgeon made these markings on my neck prior to my operation back in july. could this have been discernible to anyone?!
13 October 2010
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
08 October 2010
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!
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